Discussions By Condition: I cannot get a diagnosis.

16 years of agony no diagnosis please help...

Posted In: I cannot get a diagnosis. 28 Replies
  • Posted By: klaritydawn
  • April 7, 2010
  • 07:36 AM

Hello everyone!
This is in regards to my beautiful daughter who's suffered the same thing since she was 3 yrs old maybe before that. Severe knee pain began in her right knee and later it was in her left knee as well. The pain radiates down her legs into her feet and up into her hips. She often has to walk with a cane and sometimes a walker. She falls mostly because the pain is so excruciating she just can't stand on her legs and she falls.
Changes in the last 5yrs I'd say are they are swelling, often very red and hot but the redness goes way above and below her knees and it seems to wrap all the way around her legs. She was an extremely active little girl, soccer, dance, dirt bikes, tree climbing mostly a little tomboy. No matter what she did though every single night when her legs came to rest the pain began, we used otc rubs, ibuprofen, tylenol etc. to no avail! She's had no injury that we can remember other than when she was about three she was on one of her riding toys that you just push with your legs...she accidentally drove it down about 8 stairs. She had injuries but her little face got the bulk of it and while in the ER that is what they focused on.
She's had mri's, xrays, seen ortho. surgeons, Neurologist, and a whole host of doctors...NEVER do we get an answer. She does have several other diagnosed health issues as well. Kidney disease: they are calcifying and she's passed around 50 stones with one retrieval. Endometriosis: already had surgery to remove what they could and now because none of the birth control worked she is taking shots to throw her into pseudo menopause to try and stop anymore of it, cancers, and pray she will be able to have children one day. Recently her vit. B12 was 178, vitamin D extremely low too, and she gets severe recurrent cankers sores on her tongue, throat, side mouth and inside of lips and multiple. So much more but I've overwhelmed you already.
We are getting most things treated but the knee pain keeps her chained to her bed for the most part. She's been home schooled all of her high school career and now her first year of college she is taking on line and desperately wants to get on campus next year!
No arthritis... I have Systemic Lupus but she doesn't so far.
We are beyond tired and beyond desperate for help.....anyone please??? I just don't understand how this could go on for this many years and no answer. oh and Yes she is on heavy narcotics and several other medications as well and this is no way to grow up.
God bless all of you who are here suffering or her because someone you love is in agony. May God bless and keep each of you.
Thanks so much!
Klaritydawn

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28 Replies:

  • I have to say unfortunately the symptoms you describe sound like lupus and as I know you said she hasn't got it so far you might want to have her re-checked to make sure. May also want to have her checked for thyroid disorders. If you would could you please give us a quick list of all the symptoms experienced as I like to look at all aspects when trying to find a possible cause. Thanks and wish you and your daughter the best of luck.http://www.medicinenet.com/systemic_lupus/page2.htm
    Anonymous 42789 Replies Flag this Response
  • The shots for your daughter to go into peri menopause- I would stop them immediately. A DNC can thin the lining of her uterus without using hormones. Hormones can cause so many problems, it's unbelievable. And do not let your daughter get the Mirena IUD or cervical ring. Any foreign body can cause these illnesses.Do you live in a warmer climate where your daughter is out in the warm weather and then goes inside to an air conditioned room? Or vice versa?I would try to find a really good MD that believes in holistic treatment and treats diseases/illnesses according to their symptons, and not a number on a reference range. None of us should be 'numbers' on a reference range because it is soooo broad. We are people, individuals- just because a thyroid test comes in 'reference range' does NOT mean it is right for the individual.
    Anonymous 42789 Replies Flag this Response
  • The shots for your daughter to go into peri menopause- I would stop them immediately. A DNC can thin the lining of her uterus without using hormones. Hormones can cause so many problems, it's unbelievable. And do not let your daughter get the Mirena IUD or cervical ring. Any foreign body can cause these illnesses.Do you live in a warmer climate where your daughter is out in the warm weather and then goes inside to an air conditioned room? Or vice versa?I would try to find a really good MD that believes in holistic treatment and treats diseases/illnesses according to their symptons, and not a number on a reference range. None of us should be 'numbers' on a reference range because it is soooo broad. We are people, individuals- just because a thyroid test comes in 'reference range' does NOT mean it is right for the individual.Hello there....Yes we were made aware of the dangers of taking the shot and the dangers of not taking the shot. I understand where you are coming from here but the endometriosis was so bad that even after removing all they could get to she continued to have heavy, long and extremely painful menstrual cycles. They tried several birth control pills to no avail she continued to bleed, cramp and be in utter agony. There is a whole family history on my side of severe endometriosis and early hysterectomies myself included. I ended up in the hospital at age 15 with a diagnosis of severe, acute and chronic endometriosis and was told I would never have children but by the grace of God do I have my daughter. She isn't sexually active so there wouldn't be a need for any kind of birth control for that....and honestly I know everyone thinks I'm one of those mom's that live in denial but really she is to sick to leave the house. I took medical leave due to my health and hers so I am here all day and night with her. I really and truly understand what you are saying we thought long and hard about taking the shots and she made the choice to take it. Just seems like no matter what path we take there is a risk of cancers and other serious health issues. It would be really great to get off all the medications we are on but there are just to many health issues. I've been looking in to it actually have a couple of friends who use herbs and oils and it's very tempting but until I know for sure what is causing all her illnesses and pain I'll be honest with you I'm scared stiff to make a move. I will continue to look into what you've shared with me and I really appreciate you taking the time to reply to my post as we are truly desperate for answers.Feel free to reply if you have more to share....any advice is at least considered.God bless and keep you!klaritydawn
    klaritydawn 20 Replies Flag this Response
  • I have to say unfortunately the symptoms you describe sound like lupus and as I know you said she hasn't got it so far you might want to have her re-checked to make sure. May also want to have her checked for thyroid disorders. If you would could you please give us a quick list of all the symptoms experienced as I like to look at all aspects when trying to find a possible cause. Thanks and wish you and your daughter the best of luck.http://www.medicinenet.com/systemic_lupus/page2.htmHello Chad!!Hey I've tried to send a reply to you twice today and I don't see it anywhere?What am I doing wrong? I just replied to the unregistered post and I can immediately see it but not my reply to you?I don't want to accidentally post my reply several times and because I'm not used to this forum I don't know how to maneuver around yet.I guess if this shows up immediately I will copy and paste my reply to you again and hope it's not here more than once.Thanks Chad!!klaritydawn
    klaritydawn 20 Replies Flag this Response
  • Hello Chad!!Hey I've tried to send a reply to you twice today and I don't see it anywhere?What am I doing wrong? I just replied to the unregistered post and I can immediately see it but not my reply to you?I don't want to accidentally post my reply several times and because I'm not used to this forum I don't know how to maneuver around yet.I guess if this shows up immediately I will copy and paste my reply to you again and hope it's not here more than once.Thanks Chad!!klaritydawnChad... So sorry but I guess my reply got lost in internet land! You asked me for symptoms that my daughter has so here it is again and hope it shows this time! 1. Severe pain knees and joints 2. Muscle pain 3. Weakness, exhaustion, fatigue, 4. Dizziness, loss of balance, unsteadiness 5. Recurrent, multiple canker sores on roof of mouth, tongue, cheeks, throat, tongue, lips 6. Belching, burping, hiccupping, heartburn 7. Recent in the last month or two foul breath like stale fruit or something 8. Weight loss, loss of appetite, 9. Headache, nose bleeds, hair loss but no balding 10. Recurring swollen lymph nodes 11. Extremely Pale almost fluorescent looking at times 12. Whites of eyes look yellowish 13. Constipation, diarrhea , nausea 14. Short fingers that are much wider towards the knuckles and then narrowing towards the tips, 15. Short fingernail beds and wide finger nails 16. Short toes.. (looks like the pinkie toe and the 4th toe switched places) sounds odd but it’s true and then the 3rd toe on the right foot is short and kind of webbed to the 4th toe. 17. She was knock Kneed as a child 18. 71/2 weeks premature 19. Confusion, loss of concentration 20. Cold hands and feet 21. Low body temperature (usually between 96 and 97 degrees 22. Her tendons are very tight in her legs she’s never been able to touch her toes 23. The muscles in her upper arms feel hard but she’s not getting any exercise so it is an odd ordeal that is something that has changed in the last two years 24. Fluttering heart, skipping beats….or it feels like that to her 25. Thick wide wrist Did I put the list of diagnoses she already has? 1. Nephrocalcinosis or both kidneys are calcifying 2. Hypercalcuria 3. Recurrent kidney stones with one retrieval 6mm struvite stone 4. Most stones are phosphate and or oxalate 5. Recurrent urinary, bladder, kidney infection 6. Calcium in the urine Endometriosis surgery to remove it and now on shots that put her in pseudo menopause Scoliosis which is argumentative on what the degree of seriousness is (mild or moderate) Low vitamin b12 I think it was 178 Low vitamin D (severe also) IBS and Acid Reflux She has all of these symptoms but they are not all there all the time I’m sure I’ve missed some things and if anyone has any questions please don’t hesitate to ask. I really appreciate you reading my post and replying to it, I am just at a loss and she is exhausted and so ill right now. Chad you said something about her thyroid being checked I asked her doctor and they said it has come back fine recently? I know from my own experience Lupus is very difficult to catch and diagnose but she’s been sick for a very long time, just praying that someone figures it out soon. Thanks again!! Klaritydawn
    klaritydawn 20 Replies Flag this Response
  • Chad... So sorry but I guess my reply got lost in internet land! You asked me for symptoms that my daughter has so here it is again and hope it shows this time! 1. Severe pain knees and joints 2. Muscle pain 3. Weakness, exhaustion, fatigue, 4. Dizziness, loss of balance, unsteadiness 5. Recurrent, multiple canker sores on roof of mouth, tongue, cheeks, throat, tongue, lips 6. Belching, burping, hiccupping, heartburn 7. Recent in the last month or two foul breath like stale fruit or something 8. Weight loss, loss of appetite, 9. Headache, nose bleeds, hair loss but no balding 10. Recurring swollen lymph nodes 11. Extremely Pale almost fluorescent looking at times 12. Whites of eyes look yellowish 13. Constipation, diarrhea , nausea 14. Short fingers that are much wider towards the knuckles and then narrowing towards the tips, 15. Short fingernail beds and wide finger nails 16. Short toes.. (looks like the pinkie toe and the 4th toe switched places) sounds odd but it’s true and then the 3rd toe on the right foot is short and kind of webbed to the 4th toe. 17. She was knock Kneed as a child 18. 71/2 weeks premature 19. Confusion, loss of concentration 20. Cold hands and feet 21. Low body temperature (usually between 96 and 97 degrees 22. Her tendons are very tight in her legs she’s never been able to touch her toes 23. The muscles in her upper arms feel hard but she’s not getting any exercise so it is an odd ordeal that is something that has changed in the last two years 24. Fluttering heart, skipping beats….or it feels like that to her 25. Thick wide wrist Did I put the list of diagnoses she already has? 1. Nephrocalcinosis or both kidneys are calcifying 2. Hypercalcuria 3. Recurrent kidney stones with one retrieval 6mm struvite stone 4. Most stones are phosphate and or oxalate 5. Recurrent urinary, bladder, kidney infection 6. Calcium in the urine Endometriosis surgery to remove it and now on shots that put her in pseudo menopause Scoliosis which is argumentative on what the degree of seriousness is (mild or moderate) Low vitamin b12 I think it was 178 Low vitamin D (severe also) IBS and Acid Reflux She has all of these symptoms but they are not all there all the time I’m sure I’ve missed some things and if anyone has any questions please don’t hesitate to ask. I really appreciate you reading my post and replying to it, I am just at a loss and she is exhausted and so ill right now. Chad you said something about her thyroid being checked I asked her doctor and they said it has come back fine recently? I know from my own experience Lupus is very difficult to catch and diagnose but she’s been sick for a very long time, just praying that someone figures it out soon. Thanks again!! KlaritydawnHave you tried obtaining a diagnosis for hyperparathyroidism? its done with PTH hormone and calcium. the condition is characterised with people with low Vit D and high calcium
    freeryd3r 11 Replies Flag this Response
  • Have you tried obtaining a diagnosis for hyperparathyroidism? its done with PTH hormone and calcium. the condition is characterised with people with low Vit D and high calciumHello freerydr3.....Yeah get this: her pain doctor wanted her to see an Endocrinologist and gave us the name of the doctor he wanted her to see. I called them and many others before it was all over and they tell me we have to have a diagnoses of diabetes or hyperparathyroidism. I did call our doctor who is a Internal Medicine Doctor and asked them to check it the nurse assured me they had just checked it, I guess I take that as she is okay then? I'm at a loss mentally and physically both. This week she is flat unable to walk and I found her crawling on the floor Monday! She can't even get to the bathroom alone this week, I have to help her in and out of the tub and to even use the bathroom at all. Lots of suffering this week and she continues to lose weight as well. I just don't understand how she can be wasting away in front of me and for no one seems to understand why.Thanks for you reply!!! If you think I should ask again I will certainly do so with out hesitation! She will receive her last depro. shot beginning of next week and that doctor would be able to run it again??? Please let me know what you think. Klaritydawn
    klaritydawn 20 Replies Flag this Response
  • Ya I still have to go with lupus, I hate when doctors fail to diagnose things for a long period of time. I honestly feel most doctors, not all don't care. They just want the moolah and will give any random diagnosis without proper evaluation. There are some but not to many that do care what is happening with the patient. I am sorry your daughter is suffering so and I seriously think lupus should be mentioned to the doctor or doctors to make sure that is not the case. Which you may have done but sometimes it seems you have to drive it in the ground before they actually take a look at the possiblity. Ya I mentioned thyroid as it can cause many of the symptoms as well as freeryd3r pointed out the possiblity of hyperparathyroidism. Ya thats the problem with lupus is that the symptoms aren't always present as they come and go in some people. One thing I started having a tendency of doing myself as of late is writing down every single symptom past and present to give the doctor a little bit more to go on and its alot easier than trying to remember and explain them all as the doctor can easily glance at the paper you wrote it on. Plus some doctors just do not take the time to hear all you have to say symptom wise. I hope she gets the help she needs very soon. Also although I don't think this is linked to your daughter, you might find it somewhat of a beneficial read.
    Anonymous 42789 Replies Flag this Response
  • Search for chronic giardiasis.
    Anonymous 42789 Replies Flag this Response
  • Ya I still have to go with lupus, I hate when doctors fail to diagnose things for a long period of time. I honestly feel most doctors, not all don't care. They just want the moolah and will give any random diagnosis without proper evaluation. There are some but not to many that do care what is happening with the patient. I am sorry your daughter is suffering so and I seriously think lupus should be mentioned to the doctor or doctors to make sure that is not the case. Which you may have done but sometimes it seems you have to drive it in the ground before they actually take a look at the possiblity. Ya I mentioned thyroid as it can cause many of the symptoms as well as freeryd3r pointed out the possiblity of hyperparathyroidism. Ya thats the problem with lupus is that the symptoms aren't always present as they come and go in some people. One thing I started having a tendency of doing myself as of late is writing down every single symptom past and present to give the doctor a little bit more to go on and its alot easier than trying to remember and explain them all as the doctor can easily glance at the paper you wrote it on. Plus some doctors just do not take the time to hear all you have to say symptom wise. I hope she gets the help she needs very soon. Also although I don't think this is linked to your daughter, you might find it somewhat of a beneficial read.Hello Chad!Thanks to you again for your reply.Yes I sure thought it was Lupus because I have it and have been diagnosed with it for probably 13yrs now so I assume with all these very familiar symptoms it just hasn't reared it's ugly head enough to get the ANA or Titer. She sees the same Internist I see so they are all very aware you know. I believe she has a few issues separate from the Lupus but then again it's such a crazy disease that it seems all things are possible with it.Her bone pain is what is shocking me so much because it is so severe and her sed rate is always fine. Even though trust me her knees do swell something awful and yes they even become very red like shes been sunburned and I've taken photos in to show them. Oh yeah and to make matters worse if that's possible and we both know it is we live an hour from our doctors so by the time we get there to the office her legs are magically clear...pain still there though! How do ya like that! Ugh! It sounds like you must also have Lupus, do you or did I not pick up on that?? Well if you do and you ever wanna just chat I'm here...k?I will look up the giardiasis. Good luck with your own health issues too.I do agree with you when it comes to doctors but there's a long history here with myself and now my daughter. If you find one that REALLY listens and really takes the time to think about your case after you're gone you best hold on to them for dear life. Thanks again!Klaritydawn
    klaritydawn 20 Replies Flag this Response
  • No actually I don't have lupus but feel for anyone in pain especially something of such nature. I just know how it is to be in pain and can't get a proper diagnosis as I have been having problems of late and I think some doctors I have seen just think I am crazy. Also at times I feel some of my family members(mainly fiance and her family members) think I am fullof it cuz I look normal at first glance. Plus I have a family member that has suffered for 20+ years from an illness and still doesn't have a proper diagnosis. I agree if you do find a doctor that listens then it is best to hold on to that doctor. Sorry my beneficial read apparently got deleted by a moderator. Seems they don't want me posting informative information on here of late. I thank you for wishing me luck with my health issues and hopefully they will get worked out soon. Anyhow it is horrible in any situation when you cannot get a proper diagnosis on your illness and even worse when you know what it is with almost 100% certainity and yet still cannot get diagnosised with it so it prevents you proper treatment. I honestly hope I am wrong with the lupus and I know you feel the same and hope its not lupus but at the same time a proper diagnosis gives some ease. Thanks for the offer to chat as well, I really wish you and your daughter the best with the health issues. I hope soon she will get a proper diagnosis and with any luck it won't be lupus(hopefully something alot less troublesome).
    Anonymous 42789 Replies Flag this Response
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  • No actually I don't have lupus but feel for anyone in pain especially something of such nature. I just know how it is to be in pain and can't get a proper diagnosis as I have been having problems of late and I think some doctors I have seen just think I am crazy. Also at times I feel some of my family members(mainly fiance and her family members) think I am fullof it cuz I look normal at first glance. Plus I have a family member that has suffered for 20+ years from an illness and still doesn't have a proper diagnosis. I agree if you do find a doctor that listens then it is best to hold on to that doctor. Sorry my beneficial read apparently got deleted by a moderator. Seems they don't want me posting informative information on here of late. I thank you for wishing me luck with my health issues and hopefully they will get worked out soon. Anyhow it is horrible in any situation when you cannot get a proper diagnosis on your illness and even worse when you know what it is with almost 100% certainity and yet still cannot get diagnosised with it so it prevents you proper treatment. I honestly hope I am wrong with the lupus and I know you feel the same and hope its not lupus but at the same time a proper diagnosis gives some ease. Thanks for the offer to chat as well, I really wish you and your daughter the best with the health issues. I hope soon she will get a proper diagnosis and with any luck it won't be lupus(hopefully something alot less troublesome).Hey Chad...Well glad to know you don't have lupus but sorry you don't have the diagnosis you desperately need. Yes it is horrible and can even be worse not having a diagnosis than having one. I went through the exact same thing before one of my doctors finally thought to test me for lupus and it came back positive. You know back when I got that diag. I had never even heard the word lupus, I was so scared because I was so sick but now it doesn't bother me much. It was a huge blessing to know what was making me ill. I understand from the depth of my soul what it feels like for people to think you're crazy from both me and my daughter. My daughter has basically lost all of her friends and we have basically lost a lot of family members due to not having a diagnosis. Like you a stranger would look at my child and think she was perfectly healthy but that couldn't be further from the truth. I can see when she is having a bad time because I'm with her daily but others think she's fine. Now she's losing a lot of weight fast and that I would think will set off alarms with the doctors but we will see. Even I've been accused of making her ill.....that is an anger inside I may never recover from. Doctors say horrible things when they can't figure out what is wrong. 16yrs of fighting to help her and I wonder if the day will ever come. I'm so, so sorry you are going through anything like this because I know how horrible it is. I went through the same thing with my husband before I got my diag. and that will remain forever etched in my heart. Now you see I have the "NAME" and everyone who doubted me seems quite content but I still can't forgive them for doubting me. I guess losing my sight and having to take chemo. and solumedral infusions was a wake up call along with countless other things. Here we are going through the same thing with my daughter and I have NO patience with Anyone who doesn't believe her....know what that feels like. Good grief what's that about anyway?? I think you are from the UK or Canada because I have friends in both places and I pick up on little things you say that they say...? I'm asking because I'm curious if you all have Mystery Diagnosis wherever you are? If you ever get the chance to watch that it is full of cases just like ours...some people go for years w/out diag. and then finally they get it! Many of them say the exact same thing as us about doctors and sadly family and friends. I've added you to my prayer list and will be praying that you DO get your diag. very soon. I'm with you totally at this point my husband, daughter and I feel what ever "it" is can be dealt with it's what "it" isn't that we can no longer endure...but we will right! I'm sorry for your family member who's gone over 20rys with no answer. Yes I'm here if you need to chat or think of anything re my daughter please let me know. If you feel like sharing what it is that you're going through I'd love to listen? Oh yeah haven't had a moment to look up the info. you suggested yet but will try to tonight...God bless!
    klaritydawn 20 Replies Flag this Response
  • No actually I don't have lupus but feel for anyone in pain especially something of such nature. I just know how it is to be in pain and can't get a proper diagnosis as I have been having problems of late and I think some doctors I have seen just think I am crazy. Also at times I feel some of my family members(mainly fiance and her family members) think I am fullof it cuz I look normal at first glance. Plus I have a family member that has suffered for 20+ years from an illness and still doesn't have a proper diagnosis. I agree if you do find a doctor that listens then it is best to hold on to that doctor. Sorry my beneficial read apparently got deleted by a moderator. Seems they don't want me posting informative information on here of late. I thank you for wishing me luck with my health issues and hopefully they will get worked out soon. Anyhow it is horrible in any situation when you cannot get a proper diagnosis on your illness and even worse when you know what it is with almost 100% certainity and yet still cannot get diagnosised with it so it prevents you proper treatment. I honestly hope I am wrong with the lupus and I know you feel the same and hope its not lupus but at the same time a proper diagnosis gives some ease. Thanks for the offer to chat as well, I really wish you and your daughter the best with the health issues. I hope soon she will get a proper diagnosis and with any luck it won't be lupus(hopefully something alot less troublesome).Okay yeah...I've heard of giardia my nephew actually was infected with that last summer and picked it up from a canoe trip he'd been on. He got pretty ill from it and lost a lot of weight he didn't have to lose. It too took a bit for the doctors to find. Interesting information too...that's the first time I've read about it.
    klaritydawn 20 Replies Flag this Response
  • Hey Chad...Well glad to know you don't have lupus but sorry you don't have the diagnosis you desperately need. Yes it is horrible and can even be worse not having a diagnosis than having one. I went through the exact same thing before one of my doctors finally thought to test me for lupus and it came back positive. You know back when I got that diag. I had never even heard the word lupus, I was so scared because I was so sick but now it doesn't bother me much. It was a huge blessing to know what was making me ill. I understand from the depth of my soul what it feels like for people to think you're crazy from both me and my daughter. My daughter has basically lost all of her friends and we have basically lost a lot of family members due to not having a diagnosis. Like you a stranger would look at my child and think she was perfectly healthy but that couldn't be further from the truth. I can see when she is having a bad time because I'm with her daily but others think she's fine. Now she's losing a lot of weight fast and that I would think will set off alarms with the doctors but we will see. Even I've been accused of making her ill.....that is an anger inside I may never recover from. Doctors say horrible things when they can't figure out what is wrong. 16yrs of fighting to help her and I wonder if the day will ever come. I'm so, so sorry you are going through anything like this because I know how horrible it is. I went through the same thing with my husband before I got my diag. and that will remain forever etched in my heart. Now you see I have the "NAME" and everyone who doubted me seems quite content but I still can't forgive them for doubting me. I guess losing my sight and having to take chemo. and solumedral infusions was a wake up call along with countless other things. Here we are going through the same thing with my daughter and I have NO patience with Anyone who doesn't believe her....know what that feels like. Good grief what's that about anyway?? I think you are from the UK or Canada because I have friends in both places and I pick up on little things you say that they say...? I'm asking because I'm curious if you all have Mystery Diagnosis wherever you are? If you ever get the chance to watch that it is full of cases just like ours...some people go for years w/out diag. and then finally they get it! Many of them say the exact same thing as us about doctors and sadly family and friends. I've added you to my prayer list and will be praying that you DO get your diag. very soon. I'm with you totally at this point my husband, daughter and I feel what ever "it" is can be dealt with it's what "it" isn't that we can no longer endure...but we will right! I'm sorry for your family member who's gone over 20rys with no answer. Yes I'm here if you need to chat or think of anything re my daughter please let me know. If you feel like sharing what it is that you're going through I'd love to listen? Oh yeah haven't had a moment to look up the info. you suggested yet but will try to tonight...God bless!lol that was someone else that put up chronic giardiasis, I put up a link in one of my posts with information which unfortunately I don't recall what it was and it was deleted. I'm actually from the States. Not having a diagnosis is definately troublesome, its one of the reasons I been making an effort to reply to as many posts as I can on here especially the ones that don't get many replies or if I find a possible better cause of certain symptoms. That family member of mine I believe personally either MS or parkison's disease. The problem is though she fell down about 6 steps and landed with her head hitting a concrete sidewalk. Since then she has had this trouble so it makes you want to think logically of a pinched nerve or something along those lines but supposedly she doesn't have a pinched nerve. Her condition started out with tremors starting out mostly in limbs then to one side then full body. At one point she was diagnosised with EP as she got bad enough where she would try to swallow her tongue. Then she also got other symptoms such as muscle weakness, cognitive problems, balance issues and various other issues. I have mentioned to her of the two diseases but she has yet to have them mentioned to a doctor. Why? I don't reraslly know, maybe she has adjusted to the fact she has been the way she has for such a long time and feels she will never recover from it so whats the use. I'm not really certain but its bad for sure. I appreciate the fact of you hoping I recieve a diagnosis. I believe I am adjusting to my pain which is a bad thing for anyone to have to do. I just hope for your daughter's sake that one of the doctors will notice she is not okay and do thier best to find the right diagnosis. Its hard not having a diagnosis or being misdiagnosed especially when you know thats not what is causing your troubles. Its hard to keep faith that you will ever get better when you just keep getting so many wrong diagnosises over and over again. It makes you think will I ever recover and without proper diagnosis its hard for you to figure out what yourself can do to help yourself ease the pain. I know there are some things that you naturally already know or figure out that helps but with a proper diagnosis you copuld study what has worked for others to hopefully benefit yourself and find some relief. I'm sorry yopu had to go through with people thinking you were crazy/disbelieving you on how you felt. It sad when it takes a proper diagnosis to make people believe you. It shouldn't have to be that way, you as a person know how you feel rather you appear to be normal or not. People need to learn to go on that instead of going on just appearance. Its just like with myself and this isn't towards my problem but when I swell from anything its not very much if at all unless internally except my lymhnodes. Example just by looking at me if I started having swelling from a issue you probably couldn't tell it as either I don't show much more than slight puffiness externally or none at all but internally my throat could be swelling up,etc. Whats even worse is when loved ones especially the one your with appears not to believe you, like you said which occurred with your husband. I see no reason for it that trust should naturally be there, why would you lie about being ill, what is the purpose of disblief? Those are what I wonder at times. I haven't done anything to cause this disbelief so why is it there? Its just something you tend to ask yourself when you feel like such and feel your wife/husband and loved ones disbelieve you.All anyone really can do is keep trying or give up when you cannot get help due to misdiagnosis. I personally refuse to give up as I have a daughter that I wish to see grow up into a fine young woman. I have felt like it at times and I am sure as everyone with a certain degree of illness that cannot get a proper diagnosis has. Anyhow I wish you and your daughter the best, just keep your daughter re-assured and not to give up. The only advice I can give her or you is hound the doctors as much as possible, see mutiple doctors and keep trying.
    Anonymous 42789 Replies Flag this Response
  • lol that was someone else that put up chronic giardiasis, I put up a link in one of my posts with information which unfortunately I don't recall what it was and it was deleted. I'm actually from the States. Not having a diagnosis is definately troublesome, its one of the reasons I been making an effort to reply to as many posts as I can on here especially the ones that don't get many replies or if I find a possible better cause of certain symptoms. That family member of mine I believe personally either MS or parkison's disease. The problem is though she fell down about 6 steps and landed with her head hitting a concrete sidewalk. Since then she has had this trouble so it makes you want to think logically of a pinched nerve or something along those lines but supposedly she doesn't have a pinched nerve. Her condition started out with tremors starting out mostly in limbs then to one side then full body. At one point she was diagnosised with EP as she got bad enough where she would try to swallow her tongue. Then she also got other symptoms such as muscle weakness, cognitive problems, balance issues and various other issues. I have mentioned to her of the two diseases but she has yet to have them mentioned to a doctor. Why? I don't reraslly know, maybe she has adjusted to the fact she has been the way she has for such a long time and feels she will never recover from it so whats the use. I'm not really certain but its bad for sure. I appreciate the fact of you hoping I recieve a diagnosis. I believe I am adjusting to my pain which is a bad thing for anyone to have to do. I just hope for your daughter's sake that one of the doctors will notice she is not okay and do thier best to find the right diagnosis. Its hard not having a diagnosis or being misdiagnosed especially when you know thats not what is causing your troubles. Its hard to keep faith that you will ever get better when you just keep getting so many wrong diagnosises over and over again. It makes you think will I ever recover and without proper diagnosis its hard for you to figure out what yourself can do to help yourself ease the pain. I know there are some things that you naturally already know or figure out that helps but with a proper diagnosis you copuld study what has worked for others to hopefully benefit yourself and find some relief. I'm sorry yopu had to go through with people thinking you were crazy/disbelieving you on how you felt. It sad when it takes a proper diagnosis to make people believe you. It shouldn't have to be that way, you as a person know how you feel rather you appear to be normal or not. People need to learn to go on that instead of going on just appearance. Its just like with myself and this isn't towards my problem but when I swell from anything its not very much if at all unless internally except my lymhnodes. Example just by looking at me if I started having swelling from a issue you probably couldn't tell it as either I don't show much more than slight puffiness externally or none at all but internally my throat could be swelling up,etc. Whats even worse is when loved ones especially the one your with appears not to believe you, like you said which occurred with your husband. I see no reason for it that trust should naturally be there, why would you lie about being ill, what is the purpose of disblief? Those are what I wonder at times. I haven't done anything to cause this disbelief so why is it there? Its just something you tend to ask yourself when you feel like such and feel your wife/husband and loved ones disbelieve you.All anyone really can do is keep trying or give up when you cannot get help due to misdiagnosis. I personally refuse to give up as I have a daughter that I wish to see grow up into a fine young woman. I have felt like it at times and I am sure as everyone with a certain degree of illness that cannot get a proper diagnosis has. Anyhow I wish you and your daughter the best, just keep your daughter re-assured and not to give up. The only advice I can give her or you is hound the doctors as much as possible, see mutiple doctors and keep trying.Ooops sorry about that, I guess I wasn't paying much attention there. Well at any rate I did look that chronic G...up and it doesn't fit here but I still appreciate that person taking the time to think about her. I wish though that I could have seen what you were referring to, if you remember what it is please let me know.So your family member sounds like she too is going through an awful lot and I hate to hear that. I have to ask the question though.....does her friends and family believe she is in trouble? I hope she isn't having to deal with that as well. You know Chad things like ms and parkinsons can be very difficult to diagnose much like lupus and they have a way of mimicking so many other diseases. I guess you don't feel comfortable sharing your health issues? I'm sorry I won't ask again I just didn't know if you caught that part and or just don't wanna chat about it. Yeah I can't help but feel hurt and sadness for anyone going through this kind of thing with no help. I get on here and meander around trying to find someone I can help and I've only found a few I felt like I could reply to...well with any kind of knowledge but I think you are correct and just replying at all is likely helpful. I think I will start doing the same..thanks. I wonder why some people just don't get many replies?? I've only gotten a few besides you but Any ideas at all are helpful. So do you think you pretty much know what you have then? I'm pretty sure I know a few things wrong with my daughter but yeah no one will listen. You said basically keep hounding the doctors....well you know that can cause a problem too. If you step on their toes to much or get to many opinions they label you and that is wrong!! What are we to do if not keep going, fighting, begging, pleading you know. Yeah I get what you mean about giving up too. I hate to admit this but then who cares...things have been so bad around here sometimes that yeah I've thought of ways to end it for both of us. My daughter is the only thing that makes me keep fighting to stay here! I understand what you're saying and yes your daughter needs her daddy. Soooo you will keep fighting and so will I. Well my friend.....as I've said before I am here if you ever decide you need or want to chat about anything. Oh...and I no longer care who believes me or my daughter because like you we've done nothing to warrant such questioning. Hang in there and keep fighting no matter what! You never know if tomorrow will be your day!!! Sorry so long but I glanced up and read about your family member and her symptoms and wanted to tell you something.All those symptoms she is having I had in the beginning and still have. ALL of them! Although I have been diagnosed with the lupus my doctors are Constantly looking for MS due to all my symptoms. You said she won't say anything to her doctors likely because she's become a custom to living this way.... you think you could get her to say something if you remind her that her symptoms may get a lot worse? If she does have either of these things she could get MUCH worse with out the proper treatment (which I'm sure you know). I don't know a whole lot about the parkinsons but I Do know a lot about the MS as I have an aunt with it. MS can deteriorate your body and leave you in a wheel chair not to mention the countless other things it can do to you. I'm sorry if i'm out of line it just worries me that she won't say anything. God bless and keep you and yours!
    klaritydawn 20 Replies Flag this Response
  • Oh nope must have not noticed you asking me about my health issue. To be perfectly honest I have some strong beliefs to what my issue is but have ran into a couple things that is possible. I believe I have TMJ but could have glossopharyngeal neuralgia (GPN). It all started when I had a tooth infection on the lower left side that spread down into my jaw and into my throat and neck. Of course I had that tooth removed and the pain continued even after so, which then I had two more teeth removed on the upper portion that way I wouldn't have any upper and could get flase teeth as well as I thought one of the teeth was digging into my lower extraction due to malocclusion of the teeth from the previous tooth extraction. I had 2 upper teeth for about 2 years which might have thrown off my alignment some especially with the removal of that lower tooth that connected with one of those two teeth. I am in the process atm of getting a upper plate which I am hoping resolves my issue as my jaw should get the rest it needs and be able to properly align back up. Although I have been diagnosed with dental caries before th tooth extraction, strep, viral pharangytis, told by a doctor he didn't know, had another doctor tell me there was a virus going around in the community that has had similiar problems but didn't name the virus. Been on antibiotics, steriods, pain killers, Motrin as of late for inflammation. The only actualy testing out of the dentists and doctors I have seen was a blood tests to test my bloods count and check for bacteria. As well as a swab test for bacteria and those were done because one of the doctors was thinking mono due to having it for such a long period of time. Of course none of those helped and I am still in pain. I just been taking NASIDs for inflammation(around 600mg at a time) and using ice and heat to help reduce inflammation and pain. Also got fed up of being in pain and told by the dentists I have seen that they would not fit me for upper teeth for at least 4-6 weeks after my last extractions. So I been using a nightguard on my lower teeth to keep my gums gapped from my lower teeth to try and provide some relief. Anyhow my belief is TMJ, there is a possiblity of GPN or something else. MY symptoms have been pain in neck and throat, feeling of something stuck in my throat, some jaw pain the throat and neck is the more predominant problem, discoloration near my TMJ, black circles around my eyes, swollen lymphnodes, post nasal drip, stuffy or runny nose, tingling/muscle twitches in different areas such as fingers, legs, etc, and trouble swallowing at times. At one time I thought my throat was going to swell shut as I was having so much problems swallowing and even thought I was having a little difficulty breathing. At times to me it appears as if inside the back of my throat might get swollen a bit as its weird at one time I can visibily see my adenoids and tonsils just by opening my mouth and putting my tongue in a certain position without going ahhhhhhhh but others I can't see them no matter what I do unless I go ahhhhh. Might just be me. Nope your not out of place I wish the family member of mine would mention those diseases to the doctor. I have reminded her on several occasions yet she doesn't seem to do it. I have even told her I would call her doctor for her and mention them but she never gives me a number or anything. I'm glad you don't care what anyone thinks about you or your daughter concerning the problems you all have been dealing with. As you both know and thats what matters, if family members or people in general don't wish to believe you then who needs em. Whats strange is I never though TMJ if I do indeed have TMJ could ever be as painful as this. I have had bleeding uclers(still have deuodondal uclers), GERDS, and many other problems yet this has been the worse pain I have ever dealt with. The test I took for TGN and TMJ came back with possiblity of GPN. GPN is part of trigeminal neuralgia which is considered as the suicide illness. I have read where one person claimed it to be the worst pain known to man and on a scale from 1-10 it would rate a 25. I just hope when I get these upper false teeth I will notice a difference in a week or two afterwards. I will have to make sure to mention lupus to the family member as well, thanks for the heads up as it could be a possiblity you never know. I wish you and your daughter the best and as you told me you never know if tomorrow might be your day. Keep on hanging in there hopefully all will work out for you and your daughter very soon.
    Anonymous 42789 Replies Flag this Response
  • Oh nope must have not noticed you asking me about my health issue. To be perfectly honest I have some strong beliefs to what my issue is but have ran into a couple things that is possible. I believe I have TMJ but could have glossopharyngeal neuralgia (GPN). It all started when I had a tooth infection on the lower left side that spread down into my jaw and into my throat and neck. Of course I had that tooth removed and the pain continued even after so, which then I had two more teeth removed on the upper portion that way I wouldn't have any upper and could get flase teeth as well as I thought one of the teeth was digging into my lower extraction due to malocclusion of the teeth from the previous tooth extraction. I had 2 upper teeth for about 2 years which might have thrown off my alignment some especially with the removal of that lower tooth that connected with one of those two teeth. I am in the process atm of getting a upper plate which I am hoping resolves my issue as my jaw should get the rest it needs and be able to properly align back up. Although I have been diagnosed with dental caries before th tooth extraction, strep, viral pharangytis, told by a doctor he didn't know, had another doctor tell me there was a virus going around in the community that has had similiar problems but didn't name the virus. Been on antibiotics, steriods, pain killers, Motrin as of late for inflammation. The only actualy testing out of the dentists and doctors I have seen was a blood tests to test my bloods count and check for bacteria. As well as a swab test for bacteria and those were done because one of the doctors was thinking mono due to having it for such a long period of time. Of course none of those helped and I am still in pain. I just been taking NASIDs for inflammation(around 600mg at a time) and using ice and heat to help reduce inflammation and pain. Also got fed up of being in pain and told by the dentists I have seen that they would not fit me for upper teeth for at least 4-6 weeks after my last extractions. So I been using a nightguard on my lower teeth to keep my gums gapped from my lower teeth to try and provide some relief. Anyhow my belief is TMJ, there is a possiblity of GPN or something else. MY symptoms have been pain in neck and throat, feeling of something stuck in my throat, some jaw pain the throat and neck is the more predominant problem, discoloration near my TMJ, black circles around my eyes, swollen lymphnodes, post nasal drip, stuffy or runny nose, tingling/muscle twitches in different areas such as fingers, legs, etc, and trouble swallowing at times. At one time I thought my throat was going to swell shut as I was having so much problems swallowing and even thought I was having a little difficulty breathing. At times to me it appears as if inside the back of my throat might get swollen a bit as its weird at one time I can visibily see my adenoids and tonsils just by opening my mouth and putting my tongue in a certain position without going ahhhhhhhh but others I can't see them no matter what I do unless I go ahhhhh. Might just be me. Nope your not out of place I wish the family member of mine would mention those diseases to the doctor. I have reminded her on several occasions yet she doesn't seem to do it. I have even told her I would call her doctor for her and mention them but she never gives me a number or anything. I'm glad you don't care what anyone thinks about you or your daughter concerning the problems you all have been dealing with. As you both know and thats what matters, if family members or people in general don't wish to believe you then who needs em. Whats strange is I never though TMJ if I do indeed have TMJ could ever be as painful as this. I have had bleeding uclers(still have deuodondal uclers), GERDS, and many other problems yet this has been the worse pain I have ever dealt with. The test I took for TGN and TMJ came back with possiblity of GPN. GPN is part of trigeminal neuralgia which is considered as the suicide illness. I have read where one person claimed it to be the worst pain known to man and on a scale from 1-10 it would rate a 25. I just hope when I get these upper false teeth I will notice a difference in a week or two afterwards. I will have to make sure to mention lupus to the family member as well, thanks for the heads up as it could be a possiblity you never know. I wish you and your daughter the best and as you told me you never know if tomorrow might be your day. Keep on hanging in there hopefully all will work out for you and your daughter very soon.Hello Chad!Thanks for sharing your medical problems with me. Well that is very interesting, your health problems. Yes it sounds Very painful too. I know what the TMJ is but had never heard of the GPN so I looked it up. I guess one of the test your doctor ran would have been the simple on (touching the swab to the back of your throat)? I was wondering If you've had an MRI yet, one with the die injection? Surely you have but then the way doctors work these days there is that possibility I've never heard of anything like this especially caused from teeth being pulled but yeah I guess that infection can really do a number on you. It seems pretty cut and dry that there is something very wrong with you so as far as anyone not believing you I find that a bit ridiculous to say the least. I'm awful sorry you're having so many problems with your health. From what I just read yes sir it can be extremely painful...........extremely! Wonder if you have a pinched nerve like it talked about....that can be extremely painful too! Doesn't it seem like given your situation...I mean having to pull your teeth and then getting infection seems to me like it is cut and dry! There are a handful of things that could be wrong but they all seem to lead back to your teeth. If the dentist messed up some how they surely will not tell you about it that is just a given. Well my friend I am truly sorry for your pain and it's just wrong to hurt like that! As far as your family member goes I sure hope she comes clean with her doctors cuz she might just say one thing that triggers their little minds and all at once they may be able to help her. Well I better go for now it is late here but if you should get any answers for you or your family member I'd love to hear about it. If you have new symptoms or they worsen I'd like to hear about that as well. I'll surely continue to pray for you and yours and wishing you the best always.God blessklaritydawn
    klaritydawn 20 Replies Flag this Response
  • Actually with my problem the doctors unfortunately have only ran the two tests I mentioned above, nothing else at all. The blood test for blood count and culutre swab for bacteria both came back fine. They have not ran any x-rays, MRIs, Catscans or anything of the nature guessing that is due to the lack of insurance although I wish they would. I have wondered if there is a possiblity they did something when they pulled my tooth as well, only thing I can think of is fractured my jaw or popped something out of place. If these upper dentures don't work then I have an appointment scheduled for a screening by my understand a whole lot of dental specialists. So hoping they may find the root cause which will be around May. I was put on a waiting list for that as they were so backed up and when I went to the ER dental clinic due to my symptoms as a doctor told me go see a dentist that he didn't know what was wrong they told me I had to many symptoms to go through the dental ER for help and also told no wonder your in pain you don't have dentures. At one time when I was in severe pain I got on her after an ER visit and wrote a dentist from a dentists site and I was given possible malocclusion from my lower extraction as my tooth that was extracted could have been keeping my alignment in play. I been reading and researching quite a bit and came to the possible conclusion of TMJ due to malocclusion and that dentures were a must in hopes to recover. If that doesn't help at least I got that appointment scheduled rdy to go. GPN is along the lines of a pinched nerve really its the 9th cranial nerve. I am hoping your daughter is doing alright atm and really hope she gets better and gets a proper diagnosis soon. Wishing you all the best.
    Anonymous 42789 Replies Flag this Response
  • Actually with my problem the doctors unfortunately have only ran the two tests I mentioned above, nothing else at all. The blood test for blood count and culutre swab for bacteria both came back fine. They have not ran any x-rays, MRIs, Catscans or anything of the nature guessing that is due to the lack of insurance although I wish they would. I have wondered if there is a possiblity they did something when they pulled my tooth as well, only thing I can think of is fractured my jaw or popped something out of place. If these upper dentures don't work then I have an appointment scheduled for a screening by my understand a whole lot of dental specialists. So hoping they may find the root cause which will be around May. I was put on a waiting list for that as they were so backed up and when I went to the ER dental clinic due to my symptoms as a doctor told me go see a dentist that he didn't know what was wrong they told me I had to many symptoms to go through the dental ER for help and also told no wonder your in pain you don't have dentures. At one time when I was in severe pain I got on her after an ER visit and wrote a dentist from a dentists site and I was given possible malocclusion from my lower extraction as my tooth that was extracted could have been keeping my alignment in play. I been reading and researching quite a bit and came to the possible conclusion of TMJ due to malocclusion and that dentures were a must in hopes to recover. If that doesn't help at least I got that appointment scheduled rdy to go. GPN is along the lines of a pinched nerve really its the 9th cranial nerve. I am hoping your daughter is doing alright atm and really hope she gets better and gets a proper diagnosis soon. Wishing you all the best.Oh I see.... insurance is playing a role here too! Well go figure! We are blessed to have good health insurance however my daughter will lose hers when she turns 24 I think and that's not so far away especially when we can find no answers for her. How do you like that when you go to the ER and they tell you you're in the wrong place to get help, this has been said to us before as well and that is mind boggling to me! Also understand it when one doctor says it's not my area go to this doctor who'll say it's not my area go back to the other one or go to this one....crazy! I'd like to know who's area it is, what about you! Soooo they think that your dentures will help solve the issues you're having...I'll be praying that it does!! Really I hope this is it for you and the pain will be under control for you. If this doesn't do it then yeah it's a good thing you have the other appointment set....and you'll have time to find out if the dentures are going to work before the other appointment. Gosh I just get so angry when I hear others going through such torment because I've watched my child suffer for soo, soo long! You know even if they were to do an mri on you that still may not show a pinched nerve and then they send you away like a crazy person and not until years later does it show for whatever reason...well because it's gotten so bad at that point they can't miss it. Well okay.....we're not going to even believe like that for you! I'm going to believe that your dentures are going to correct this pain for you!like I've said I'm here if you want to chat.....good luck my friend!
    klaritydawn 20 Replies Flag this Response
  • Oh wow they told you in the ER your in the wrong place?! Lmao what do they think they are there for to let people come in for help and suffer. Its crazy, they don't give a **** about people. Lmao reminds me of when I went to the ER and a doctor didn't perform one test but checked my nodes and said one side was swollen and tapped my upper gum area to check for pain referring to sinuses I guess. Then tells me well I don't know whats wrong with you go see a dentist. Thats the problem is they do not care, they just want your money and for you to get out. There are like I said some that do but its not usual. Its bad when people have to suffer so long without proper diagnosis that could have avoided them long periods of time that they had pain. I actually got a theory now as why my TMJ seems to be more predominant in the neck over jaw. I think I actually came up with a good explanation. I been actually wondering well why is it predominant in the neck over jaw if it is TMJ. Well think I found my answer lastnight. Instead of giving you a link will just post it. It comes from an orofacial disorder center.Neck pain is one of the most frequent causes of visits to health care providers. Most commonly neck pain results from an acute trauma or chronic stress placed upon the muscles within the neck. Less frequently neck pain results from impingement of the nerves, which exit out of the spine within the neck. Anyone experiencing numbness, tingling, nausea, dizziness or changes in vision associated with their neck pain should be thoroughly evaluated to rule out cervical impingement of the nerves or blood vessels within the neck.The most common cause of neck pain results from weakened muscles and poor posture. A forward head posture results in strain of the posterior muscles of the neck. This is commonly observed while driving, working on a computer, talking on a telephone or sitting at a desk. Having improper pillow support can also be a cause of neck pain. The pain is felt as a tight aching pain felt in the back of the neck and shoulders. Commonly this pain is felt as facial pain or a headache that comes up the back of the head to in and around the eyes. What is not frequently realized is that many of the muscles of the anterior neck control the jaw and tongue. Pain in these muscles can refer pain into the face, teeth and can feel like swollen glands or a lump in the throat. This can give the voice a hoarseness and cause difficulty in swallowing. Additionally, the nerve that innervates the jaw muscles and TMJ also commingles with the nerves of the neck. Therefore dysfunction within the neck structures commonly leads to problems within the jaw and vice versa.Most treatments are aimed at encouraging the normal range of motion of the joints and muscles within the neck and decreasing the aggravating factors. Surgery is only indicated where there is clear evidence that a disc or vertebrae is out of place and causing the pain and dysfunction. Even then more conservative treatments should be attempted initially.Now considering the above I started thinking I actually had conciding pain of similiar trouble in the neck with the tooth infection just to a lot worse degree. So maybe my tooth infection caused inflammation in my neck which weakened my neck muscles. Once my tooth was pulled on the lower section it also would have caused stress on the joints and muscles leading to my muscles being even more irritated and tensed even though it rid me of the infection. It also caused a misalingment due to the tooth being pulled as it connected to one of my remaining upper two teeth. This mislaginment stressed my muscles in my neck more and in all this time my jaw muscles were getting weaker as well due to neck muscles and jaw muscles being interconnected and the stress from the whole factor to begin with as well. I only had 2 upper teeth left for 2 1/2 years which also made it were my jaw no longer had enough supporting structures as my muscles were already weakened from the duration of the 2 1/2 years and all I stated above causing my muscles to stay in contstant spasm and strain. I got the two last teeth removed as to provide room for dentures and one of my two upper teeth that actually still connected with a lower tooth was slipping and going straight down into the extraction site causing even more pain. Now since I have no upper support and my muscles have been in constant strain and when you try to make the bite connect gum to teeth it adds strain as well so there is no possible way to let the muscle fully relax in the neck or jaw causing a constant ongoing cycle. Even at full rest in my sleep the best I can get is a rest like state without anything support my jaw as there are no teeth there. I been using a nightguard quite a bit and it helps keep a gap between my gums and teeth and gives my upper gums something to lay on but even then its not an even lay and also probably not as much of a gap as teeth nor as supportive as it has some give. Anyways that is my theory thus far which means it started in the neck and ended up causing the jaw problems but is a continous ongoing cyle in both neck and jaw never getting full rest in the muscles in either. So technically its TMJ caused by a starting point of neck pain. The below also comes from a site.If your jaw pain is combined with neck pain, you may have myogenous (muscle related) TMJ. This simply means that the muscles of the jaw joints have been overworked or stressed, which causes muscle tightness and nerve irritation that results in pain.Anyways that is what I am believing at this point as it does make sense, cause and effect. I hope its not a pinched nerve or in general a disorder like GPN but I have to keep it as a possiblity. There is also a chance of some other things which I haven't ruled out which I'm glad you mentioned an MRI and such as cancer is a possiblity but I feel is unlikely due to the initial pain started from a tooth infection but I have heard stranger things. I actually got a bit more concerned last night as I had an extra cancer symptom appear which was blood in the stool but I know I have ulcers(haven't bled for a long while switched to deoudondal). but didn't have any ucler related pain. Anyhow did a quick look at the possibly of the symptoms and found out it can be caused by NASIDs as a side effects which I been taking Ibproufen for months now for inflammation. Haven't had another blood in the stool problem since then though. I went today to my appointment for denture impressions and been hoping I would get my dentures in a week after the impressions were made. Unfortunately that is not the case as I have to have 3 more appointments 3rd one is when I will get my dentures. They have to check the denture size compared to mouth relativity in the next one or something to that effect. Then the one after that the occlusion(bite) make sure the match which he said usually they do everytime. Then the next one I will get them. The way I am looking at it though at least they are going to be properly made and fitted so I won't have to doubt that. Its possible they may send me on a wild goose chase if the dentures don't work trying to find help somewhere, I hope not but never know. I hate your daughter is on that chase now trying everywhere to find someone to diagnose her properly so she can start getting some relief. On that note how many doctors has she been through trying to get the to the underlying cause? Have you taken her to a rheumatologist or a clinical immunologist? Btw the link I provide hoping that it doesn't get deleted may help you out with your daughter on getting a diagnosis if it is indeed lupus.http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutfaq.aspx?articleid=380&zoneid=19If it does get deleted check out lupus.org as that is where the information I got is located. Also same gere if you need to chat feel free to pop up a message or you can even email me at freelancer63751@hotmail.com. Just make sure to put in the subject that your klaritydawn from wrongdiagnosis otherwise I might delete it not paying attention. >.<
    Anonymous 42789 Replies Flag this Response
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