Discussions By Condition: I cannot get a diagnosis.

Uhg! Any wonder any of us are diagnosed Fibro? MS?

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: tigerpaw
  • February 23, 2011
  • 02:11 AM

Try to make long story short - I posted over 9 months ago - many people suggested I had Hashimato's (sp?). See following list of recent symptoms. I have seen over 8 different Dr's - PA's. One symptom was severe neck pain left side - MRI done a month ago, thought it was my artery - received letter "Good news, nothing is wrong with your neck. Meanwhile after only 10 short minutes in MRI both arms went numb. All symptoms below started to go away finally in Jan after I started taking B complex - for three weeks I finally was my old self - felt normal (except for both arms still go numb at night while sleeping). Last week I got major tired during day, so bad I was walking into walls and falling asleep while driving. That weekend symptoms started coming back and last 5 days. Worst symptoms were extreme panic attacks one day and the rest of the week an all over achey feeling all day long that wouldn't improve unless I exercised. Also soarness in both sides of neck and facial area - totally unable to focus and brain foggy - even left my purse in store. Thankfully today I'm a bit better still this achey/numbness in neck and head. Saw a PA today - first thing she tells me is that there can't be anything wrong with my neck as it would of showed up in MRI. Complained about the ongoing numbness in both arms when laying down or sleeping - finally she reread my MRI and announced that they were so busy looking at my artery, they overlooked the disk hernia in my central neck. Will send me to a specialist for that. I went on to tell her about my other symptoms and she cut me off constantly! Finally got out that I plan to get back to work but don't see how considering the spells of fatigue and all over achiness. She started to ramble on how long it would take me to get on disability until I stopped her telling her I don't want to be on disability. She quickly diagnosed me with fibromyalgia and sent me on my way. To note this was about a 10 minute office visit and she refused to listen to all my symptoms. This coming from one of the top hospitals!!!!

I will ignore previous symptoms and only mention most recent in the past three months:please excuse spelling I'm having one of my brain freeze days.

periods of fatigue (normally I'm high strung and don't stop all day and can stay up till 2 am)
several weeks ago muscle spasms in left leg that last well over a week
muscle spasms under left rib, lasted 2 days
tingling in feet/hands
numbness feet/hands sometimes legs
extreme numbness in arms mostly while sleeping making it hard to sleep
Anxiety/depression
horrible all over achiness that lasts many days - only a hot bath or exercise helps\
sharp pains in left jaw, sometimes behind left eye, only happens once a few months.
hypoglocemia (I'm not a big eater)
all day spells of being unable to focus, forgetfullness/can't make decsions
irratibility
sometimes a low grade fever
joint pain
When I wake up in the morning it feels like either I was hit by a truck or my body is full of cement - this pretty much tells me I'm going to have a bad day.
extreme painful gas (gall stones?) couldn't get off couch for 4 hours
neck/facial achiness


When I'm having a bad week, I generally have all of the above. Yet, 90% of the symptoms went away for over three weeks?
At this point now knowing I have something wrong with the disk in my neck - i'm thinking the arm numbness at night is from that and all other symptoms are related to something else.

My bad luck I lost my job and insurance a year ago, I can't go see whoever I choose, I'm at the mercy of any DR that will see me. At this point I seem to have symptoms for MS, fibromyalgia, hashimato's, B 12 defciency and countless other conditions. I need a diagnosis asap so I can get a decent job as right now I can't imagine who the heck will hire me if I'm having one of my days and I can't even remember how to spell. I'm a woman in my early forties - normally very optimistic - full of energy. Any help very much appreciated - also any suggestions on how to get Dr's to take you seriously and actually listen to ALL of your symtoms.

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13 Replies:

  • Try to make long story short - I posted over 9 months ago - many people suggested I had Hashimato's (sp?). See following list of recent symptoms. I have seen over 8 different Dr's - PA's. One symptom was severe neck pain left side - MRI done a month ago, thought it was my artery - received letter "Good news, nothing is wrong with your neck. Meanwhile after only 10 short minutes in MRI both arms went numb. All symptoms below started to go away finally in Jan after I started taking B complex - for three weeks I finally was my old self - felt normal (except for both arms still go numb at night while sleeping). Last week I got major tired during day, so bad I was walking into walls and falling asleep while driving. That weekend symptoms started coming back and last 5 days. Worst symptoms were extreme panic attacks one day and the rest of the week an all over achey feeling all day long that wouldn't improve unless I exercised. Also soarness in both sides of neck and facial area - totally unable to focus and brain foggy - even left my purse in store. Thankfully today I'm a bit better still this achey/numbness in neck and head. Saw a PA today - first thing she tells me is that there can't be anything wrong with my neck as it would of showed up in MRI. Complained about the ongoing numbness in both arms when laying down or sleeping - finally she reread my MRI and announced that they were so busy looking at my artery, they overlooked the disk hernia in my central neck. Will send me to a specialist for that. I went on to tell her about my other symptoms and she cut me off constantly! Finally got out that I plan to get back to work but don't see how considering the spells of fatigue and all over achiness. She started to ramble on how long it would take me to get on disability until I stopped her telling her I don't want to be on disability. She quickly diagnosed me with fibromyalgia and sent me on my way. To note this was about a 10 minute office visit and she refused to listen to all my symptoms. This coming from one of the top hospitals!!!! I will ignore previous symptoms and only mention most recent in the past three months:please excuse spelling I'm having one of my brain freeze days. periods of fatigue (normally I'm high strung and don't stop all day and can stay up till 2 am)several weeks ago muscle spasms in left leg that last well over a weekmuscle spasms under left rib, lasted 2 daystingling in feet/handsnumbness feet/hands sometimes legsextreme numbness in arms mostly while sleeping making it hard to sleepAnxiety/depressionhorrible all over achiness that lasts many days - only a hot bath or exercise helps\sharp pains in left jaw, sometimes behind left eye, only happens once a few months.hypoglocemia (I'm not a big eater)all day spells of being unable to focus, forgetfullness/can't make decsionsirratibilitysometimes a low grade feverjoint painWhen I wake up in the morning it feels like either I was hit by a truck or my body is full of cement - this pretty much tells me I'm going to have a bad day. extreme painful gas (gall stones?) couldn't get off couch for 4 hoursneck/facial achiness When I'm having a bad week, I generally have all of the above. Yet, 90% of the symptoms went away for over three weeks? At this point now knowing I have something wrong with the disk in my neck - i'm thinking the arm numbness at night is from that and all other symptoms are related to something else. My bad luck I lost my job and insurance a year ago, I can't go see whoever I choose, I'm at the mercy of any DR that will see me. At this point I seem to have symptoms for MS, fibromyalgia, hashimato's, B 12 defciency and countless other conditions. I need a diagnosis asap so I can get a decent job as right now I can't imagine who the heck will hire me if I'm having one of my days and I can't even remember how to spell. I'm a woman in my early forties - normally very optimistic - full of energy. Any help very much appreciated - also any suggestions on how to get Dr's to take you seriously and actually listen to ALL of your symtoms.Have you been tested for HLA-B27? Do you come from an Rh-Negative Family?
    thefarrellfam 46 Replies
    • February 26, 2011
    • 06:09 AM
    • 0
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  • Try to make long story short - I posted over 9 months ago - many people suggested I had Hashimato's (sp?). See following list of recent symptoms. I have seen over 8 different Dr's - PA's. One symptom was severe neck pain left side - MRI done a month ago, thought it was my artery - received letter "Good news, nothing is wrong with your neck. Meanwhile after only 10 short minutes in MRI both arms went numb. All symptoms below started to go away finally in Jan after I started taking B complex - for three weeks I finally was my old self - felt normal (except for both arms still go numb at night while sleeping). Last week I got major tired during day, so bad I was walking into walls and falling asleep while driving. That weekend symptoms started coming back and last 5 days. Worst symptoms were extreme panic attacks one day and the rest of the week an all over achey feeling all day long that wouldn't improve unless I exercised. Also soarness in both sides of neck and facial area - totally unable to focus and brain foggy - even left my purse in store. Thankfully today I'm a bit better still this achey/numbness in neck and head. Saw a PA today - first thing she tells me is that there can't be anything wrong with my neck as it would of showed up in MRI. Complained about the ongoing numbness in both arms when laying down or sleeping - finally she reread my MRI and announced that they were so busy looking at my artery, they overlooked the disk hernia in my central neck. Will send me to a specialist for that. I went on to tell her about my other symptoms and she cut me off constantly! Finally got out that I plan to get back to work but don't see how considering the spells of fatigue and all over achiness. She started to ramble on how long it would take me to get on disability until I stopped her telling her I don't want to be on disability. She quickly diagnosed me with fibromyalgia and sent me on my way. To note this was about a 10 minute office visit and she refused to listen to all my symptoms. This coming from one of the top hospitals!!!! I will ignore previous symptoms and only mention most recent in the past three months:please excuse spelling I'm having one of my brain freeze days. periods of fatigue (normally I'm high strung and don't stop all day and can stay up till 2 am)several weeks ago muscle spasms in left leg that last well over a weekmuscle spasms under left rib, lasted 2 daystingling in feet/handsnumbness feet/hands sometimes legsextreme numbness in arms mostly while sleeping making it hard to sleepAnxiety/depressionhorrible all over achiness that lasts many days - only a hot bath or exercise helps\sharp pains in left jaw, sometimes behind left eye, only happens once a few months.hypoglocemia (I'm not a big eater)all day spells of being unable to focus, forgetfullness/can't make decsionsirratibilitysometimes a low grade feverjoint painWhen I wake up in the morning it feels like either I was hit by a truck or my body is full of cement - this pretty much tells me I'm going to have a bad day. extreme painful gas (gall stones?) couldn't get off couch for 4 hoursneck/facial achiness When I'm having a bad week, I generally have all of the above. Yet, 90% of the symptoms went away for over three weeks? At this point now knowing I have something wrong with the disk in my neck - i'm thinking the arm numbness at night is from that and all other symptoms are related to something else. My bad luck I lost my job and insurance a year ago, I can't go see whoever I choose, I'm at the mercy of any DR that will see me. At this point I seem to have symptoms for MS, fibromyalgia, hashimato's, B 12 defciency and countless other conditions. I need a diagnosis asap so I can get a decent job as right now I can't imagine who the heck will hire me if I'm having one of my days and I can't even remember how to spell. I'm a woman in my early forties - normally very optimistic - full of energy. Any help very much appreciated - also any suggestions on how to get Dr's to take you seriously and actually listen to ALL of your symtoms.Sounds like classic fibro to me. B*12 and Vitamin D shortages. The one thing that you might try is the Celiac diet. If you are having a malabsorption problem, that is the most likely reason, and it takes 3 weeks or longer to get all of the gluten out of your system.The way to get a doc to listen to you is easy. Write this all down, take a food diary for a month with you. What you eat and when. Then tell them that you have studied up on a few things and would like them to express their knowledge to it. If they don't listen, then find one that will.
    jackrorabbit 113 Replies Flag this Response
  • all over achey feeling all day long that wouldn't improve unless I exercised. That has me thinking of Fibomyalgia. Exercise can often help it.. so can hot baths. I believe that part of your diagnoses is correct as I cant think of any thing else with your symptoms which would be relieved by exercise and hot bath. Fibro not just can give one pain, spasms but also tingling and numbness and other strange body feels. Those with Fibro dont just get pain symptoms but also "fibro fog" (bad memory, confusion etc). Anxiety and depression often coexists. Also fatigue and insomnia. Your gas.. irritable bowel syndrome often consists with fibromyalga and may cause excess gas. IBS can come in 3 different types. Fibomyalgia may coexist with autoimmune issues and other issues. One thing you need to know is that one third or a quarter of those with fibro go on to develop chronic fatigue immunity dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome. CFS will cause fevers and other issues.(Im not currently saying you've probably got CFS as you havent distinctly mentioned some important things which would say you've gone into CFS/ME so I dont think you have it right now.. at this point it sounds you only have the FM but may be close to getting CFS so do take care!! Your fever symptom may indicate your illness is going to end up swinging that way). Be aware that vitamin B12 can help FMs very close sister illness... CFS people (they often have it by injection, I had twice weekly injections for a couple of years which did help with my CFS/ME). CFIDS people often show normal blood levels but are deficient in the actual cells and brain. Many of your symptoms may also be caused by vitamin B issues. I suggest you to check out the thread at this site on B issues. The B complex you were taking may not be enough. As other poster said.. get your vitamin D levels checked to. D deficiency can cause pains etc.
    taniaaust1 2267 Replies Flag this Response
  • That has me thinking of Fibomyalgia. Exercise can often help it.. so can hot baths. I believe that part of your diagnoses is correct as I cant think of any thing else with your symptoms which would be relieved by exercise and hot bath. Fibro not just can give one pain, spasms but also tingling and numbness and other strange body feels. Those with Fibro dont just get pain symptoms but also "fibro fog" (bad memory, confusion etc). Anxiety and depression often coexists. Also fatigue and insomnia. Your gas.. irritable bowel syndrome often consists with fibromyalga and may cause excess gas. IBS can come in 3 different types. Fibomyalgia may coexist with autoimmune issues and other issues. One thing you need to know is that one third or a quarter of those with fibro go on to develop chronic fatigue immunity dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome. CFS will cause fevers and other issues.(Im not currently saying you've probably got CFS as you havent distinctly mentioned some important things which would say you've gone into CFS/ME so I dont think you have it right now.. at this point it sounds you only have the FM but may be close to getting CFS so do take care!! Your fever symptom may indicate your illness is going to end up swinging that way). Be aware that vitamin B12 can help FMs very close sister illness... CFS people (they often have it by injection, I had twice weekly injections for a couple of years which did help with my CFS/ME). CFIDS people often show normal blood levels but are deficient in the actual cells and brain. Many of your symptoms may also be caused by vitamin B issues. I suggest you to check out the thread at this site on B issues. The B complex you were taking may not be enough. As other poster said.. get your vitamin D levels checked to. D deficiency can cause pains etc. Thank you so much for your reply! Though I've read about Fibro - and it does seem I have a large amount of symptoms - I also seem to have countless symptoms of other disorders. I am thinking on the lines of an autoimmune - started having joint pain in shoulders in knees since i was 16/17 so bad sometimes I couldn't get of the toilet, lol. I'm thinking whatever i have is just adding more symptoms and getting worse. I concerend about the diagnosis for Fibro as she never listened to the rest of my symptoms and diagnosed me in 10 minutes. I did mention it seemed the B complex was helping, she quickly laughed and said that wasn't possible. Needless to say I'll never get her to test me for it. Yet, they are more then willing to send me to physical therapy and a ENT, go figure. 9 months ago they did test my vitamin D and I now take 1000mg per day. That hasn't helped. I was also wondering if I needed to up my vitamin B, but don't want to see what happens if I do it by myself - I already pee lemon yellow - which scared the heck out of me for a week until someone said this was normal. Thank you so much!!!!! Is it possible for you to send me the link for the B thread? I searched for hours last week and couldn't find it. I was only able to locate two threads. Does Fibro or B deficiency run in families? My 19 yr old daughter also suffers mild joint pain, insomnia, disassociation, anxiety migraines. Normally I would say she's just reacting to my symptoms - but she's a tough cookie and not a complainer - she works full time and goes to full time college. Some I realize is the stress of her busy life - but poor kid is very fair skinned and has had odd things come and go like numbness in hips, rashes etc. I was like that too growing up. Nothing major - just odd symptoms that come and go. Now they are just more frequent. She also tested deficient Vitamin D but she was put on a much larger weekly does. Again, it hasn't helped.
    tigerpaw 8 Replies Flag this Response
  • Thank you so much for your reply! Though I've read about Fibro - and it does seem I have a large amount of symptoms - I also seem to have countless symptoms of other disorders. I am thinking on the lines of an autoimmune - started having joint pain in shoulders in knees since i was 16/17 so bad sometimes I couldn't get of the toilet, lol. I'm thinking whatever i have is just adding more symptoms and getting worse. I concerend about the diagnosis for Fibro as she never listened to the rest of my symptoms and diagnosed me in 10 minutes. I did mention it seemed the B complex was helping, she quickly laughed and said that wasn't possible. Needless to say I'll never get her to test me for it. Yet, they are more then willing to send me to physical therapy and a ENT, go figure. 9 months ago they did test my vitamin D and I now take 1000mg per day. That hasn't helped. I was also wondering if I needed to up my vitamin B, but don't want to see what happens if I do it by myself - I already pee lemon yellow - which scared the heck out of me for a week until someone said this was normal. Thank you so much!!!!! Is it possible for you to send me the link for the B thread? I searched for hours last week and couldn't find it. I was only able to locate two threads. Does Fibro or B deficiency run in families? My 19 yr old daughter also suffers mild joint pain, insomnia, disassociation, anxiety migraines. Normally I would say she's just reacting to my symptoms - but she's a tough cookie and not a complainer - she works full time and goes to full time college. Some I realize is the stress of her busy life - but poor kid is very fair skinned and has had odd things come and go like numbness in hips, rashes etc. I was like that too growing up. Nothing major - just odd symptoms that come and go. Now they are just more frequent. She also tested deficient Vitamin D but she was put on a much larger weekly does. Again, it hasn't helped.Fibro is autosomal dominant, or your child has a 50/50 shot at getting it. Think Gregor Mendel and his peas. To fight the Vitamin D deficiency, you need about 50k a month. Get a script from a doc for the 1 pill a month, it stores in your fat cells and is drawn out as you need it. I think the B 12 works closely to that, but your body eats it up faster. Also, fibro eats up electrolytes, so Gatorade or some other sports drink daily will help to some degree. For the kid, the fair skin, hip numbness, rash(especially a butterfly rash on the face), could be Lupis, it also flares up anytime they are in the sun for any short length of time and will cause bumps to show up all over the skin. If that is the case, get them tested ASAP, because there are effective treatments if it is caught early. My wife has it.
    jackrorabbit 113 Replies Flag this Response
  • Fibro is autosomal dominant, or your child has a 50/50 shot at getting it. Think Gregor Mendel and his peas. To fight the Vitamin D deficiency, you need about 50k a month. Get a script from a doc for the 1 pill a month, it stores in your fat cells and is drawn out as you need it. I think the B 12 works closely to that, but your body eats it up faster. Also, fibro eats up electrolytes, so Gatorade or some other sports drink daily will help to some degree. For the kid, the fair skin, hip numbness, rash(especially a butterfly rash on the face), could be Lupis, it also flares up anytime they are in the sun for any short length of time and will cause bumps to show up all over the skin. If that is the case, get them tested ASAP, because there are effective treatments if it is caught early. My wife has it.all of you please visit http://www.RhNegativeRegistry.com
    thefarrellfam 46 Replies Flag this Response
  • The B thread is here http://forums.wrongdiagnosis.com/showthread.php?t=9948................ Fibro doesnt cause dissocation .. but B issues can cause all kinds of mental health issues affecting moods and the brain so possibly dissocation.
    taniaaust1 2267 Replies Flag this Response
  • all of you please visit http://www.RhNegativeRegistry.com Interesting you mention the electolytes - I'm always thirsty - my blood pressure is always low and the Dr keeps asking if I drink enough. Thanks for the site I'll check it out.
    tigerpaw 8 Replies Flag this Response
  • Interesting you mention the electolytes - I'm always thirsty - my blood pressure is always low and the Dr keeps asking if I drink enough. Thanks for the site I'll check it out.Constant excessive thirst is a warning sign for diabetes, just so you are aware.
    jackrorabbit 113 Replies Flag this Response
  • Constant excessive thirst is a warning sign for diabetes, just so you are aware. Finally I found these postings again - I have a hard time navigating. I was also concerned about diabetes. I get super dizzy and nausea if I don't eat. Sometimes I have to eat every two hours and I'm still starving. And to be honest, I don't care much for eating. Not my thing. I did take a home test, it tested your glucose for the last three months and that came out fine.
    tigerpaw 8 Replies Flag this Response
  • Have you been tested for HLA-B27? Do you come from an Rh-Negative Family? No I haven't been tested, or at least I doubt it - sorry but I'm not sure what that is? But thank you so much for your reply, later i'll try to look it up.
    tigerpaw 8 Replies Flag this Response
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  • Finally I found these postings again - I have a hard time navigating. I was also concerned about diabetes. I get super dizzy and nausea if I don't eat. Sometimes I have to eat every two hours and I'm still starving. And to be honest, I don't care much for eating. Not my thing. I did take a home test, it tested your glucose for the last three months and that came out fine.The time to check it is first then when you wake up. Also, you could have a minor level of it, which a home test might not catch, since the blood sugar doesn't drop far enough for you to need insulin. I believe(double check as it has been 3 years since my aunt who had it died) that the "normal range" is 80-200, anything over 200 is dangerous, and under 80 can cause faintness.
    jackrorabbit 113 Replies Flag this Response
  • Finally I found these postings again - I have a hard time navigating. I was also concerned about diabetes. I get super dizzy and nausea if I don't eat. Sometimes I have to eat every two hours and I'm still starving. And to be honest, I don't care much for eating. Not my thing. I did take a home test, it tested your glucose for the last three months and that came out fine. Getting dizzy and nausea when not eating so having to eat frequency.. is a sign of hypoglycemia (not uncommon in CFS/ME). Thirst isnt uncommon in CFS/ME either and 86% of ones with CFS/ME have low BP. (I dont know about low BP.. but thirst and hypoglycemia arent symptoms which go along with if someone has just Fibomyalgia so its certainly going towards you also having some CFS/ME with that fibro due to your range of symptoms. As exercise thou helps you (due to the fibro).. I think the CFS/ME is mild in your case, it may not take much of a trigger thou to throw you into a very obvious case CFS/ME so take care). The hypoglycemia may show up on blood tests if the tests are done while you have it (I have hypogycemia with the CFS/ME, my hypogycemia clearly shows up on blood tests at times when the doctor has got some done and sent away to the lab .. i have no idea about home tests thou). For that.. you need to keep doing what you are doing, eatting frequently. Try to thou to eat regular complex carbohydrates which will release glucose for longer and in a steadier way rather then have your blood sugar trying to pitch up and diving all the time by taking simple carbs eg sugar
    taniaaust1 2267 Replies Flag this Response
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