Discussions By Condition: I cannot get a diagnosis.

Please Help Me...

Posted In: I cannot get a diagnosis. 29 Replies
  • Posted By: Anonymous
  • May 17, 2007
  • 03:50 PM

I have been having a lot of problems for the past 9 years, and no one can figure it out....

I have trouble regulating my body temperature (one minute I'm hot, the next minute I'm cold), my hands and feet turn purple for no apparent reason, my legs, feet, hands, and arms go numb and tingly, I'm always tired, I have joint, bone and muscle pain that is getting persistantly worse every day, I never have a normal bowel movement (it just goes back and forth between constipation and diarrehea), I get electric shocks in my neck, I get dizzy when I stand up or move too quickly ( I have fainted a couple of times from this), I have visual snow, and now I am starting to bald.

I feel like I am 80 years old, but I'm only eighteen. I've had multiple blood and urine tests, cat scans, and MRI's, but no one can figure it out.

If anyone has any clue as to what it may be or has experienced similar problems, please let me know....

Reply Flag this Discussion

29 Replies:

  • There are many more symptoms than what I have listed, but these are the most persistant and troublesome.....
    Anonymous 42789 Replies Flag this Response
  • anje...PLEASE read the last 4 pages of "It's a mystery until we solve it"-mommy cat there, you will find several people with your similar symptoms I have tried to keep the title to most so you may go back and chat with someone specifically..as in someone with same/similar symptoms to your own lots of people...same symptoms...just piecing it all together Best to You...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Anje I have similar, but not the same symptoms. The only 2 things that I can think of, that even "sort" of fit are Lupus and B12, have they tested you for these? Have you been seeing the same DR, going to a bunch of different DR's and what specialty of DR's have you seen? Also are you eating right or stressed out? You are so young to have been going through this for so long. Cala
    Cala1234 57 Replies Flag this Response
  • I have had similar problems. I started to lose hair , I was VERRRy tired , I gained weight, my body hurt, my bowels didnt know whether to run or stop up my hair felt like straw, I was always in a mental fog, my body was warm and my feet and/or my hands would freeze . MISERY!! Too many symptoms to list. I found out I was hypothyroid and had anemia. After a year of taking PILLS PILLS PILLS I got tired. They did more harm than good. I found out about natural products and I tried a cleanse, its by Dr. Natura and I cannot express the ways this system helped me!!! I feel BETTER than ever. ALL my pains , aches and symptoms ARE GONE!!!! I am a living witness to the amazing power of this cleanse. I paid like $120 for a three month supply but I cannot stress how worth it , it really is. I can PROMISE once you try it you will be amazed. I was scared , nervous and I was very sceptical but figured whats the worst that could happen? Please think about trying this stuff. I have told everyone I know about it and they were all huge sceptics but now they are speading the word about this cleanse.Just search for Dr.natura and it should pop up their site.I wish you all the best and I will keep you in my prayers.-Sev
    sevlep 3 Replies Flag this Response
  • Anje I have similar, but not the same symptoms. The only 2 things that I can think of, that even "sort" of fit are Lupus and B12, have they tested you for these? Have you been seeing the same DR, going to a bunch of different DR's and what specialty of DR's have you seen? Also are you eating right or stressed out? You are so young to have been going through this for so long. CalaI was going to call tomorrow to schedule an appointment with a new doctor. I'm going to get all of my medical records and a complete list of symptoms, and discuss with the doctor about getting tested for lupus. I have already had all of my vitamin and mineral (especially iron) levels checked, my thyroid checked. I've had MRI's and Cat Scans done on my brain, looking for lesions or any sign of MS (I have a family history), but everything showed up clean. The only thing is, doctor's look at my history and automatically say that it is all in my head and don't put in the effort to figure out what is wrong. I've had a traumatic childhood and I had depression for many years and have been on and off SSRI's. I'm am glad to say that I have finally beat my depression and haven't taken any anti-depressants in over two years. I also have general and social anxiety for which I take xanex for (which I have only started to take about 2 months ago). It's because of these psychological problems that doctors automatically assume that my illness is mental as well, when I know that it isn't. My mental state has improve drastically, but yet my body is slowly deteriorating. Therapy and psychopharmaceuticals have not helped in the slightest.I try and stay as healthy as I can. I was a little over weight as I was growing up (due to the depression), but I have lost it all, and now I am at a very healthy weight for my height. I try to exercise regularly and eat right, so I know that it is not due to poor diet and exercise......
    Anonymous 42789 Replies Flag this Response
  • Anje I am sorry to hear your childhood was not great, but happy you are or have overcome it! Keep your head up! Hopefully it will all work out tomorrow. I think that's a very good idea to get all of your records together along with a list of symptoms. Another thing that might help is to note complaints that are in your records that you had, that no longer bother you (depression, etc). Remember that some disorders are not diagnosed in one visit and may take years to piece together. Neuro problems such as MS sometimes take years to fully show thier ugly heads. Some people go years before lesions show up on MRI's. I know that probably didn't make you feel any better. Good luck tomorrow and take care. Cala
    Cala1234 57 Replies Flag this Response
  • My mother in law is going through a lot of problems right now (with pain in her head-going on 2.5 yrs) they have done a ton of tests on her and the only thing they think it might be is something called trigeminal neuralgia (TN), she is having some of the same symptoms as you-one would be the electric shock pain, she is also having alot of numbness. I just thought maybe you would want to look into it. Good Luck and you will be in my prayers
    Anonymous 42789 Replies Flag this Response
  • you and your mother in law should be tested for chronic fatigue syndrome that's what we call Myalgic Encephalomyelitis in this country what I've been trying to tell people is tha myself and several family members and friends are all having CFS symptoms they come and go, they get worse and better, they don't follow a pattern, no rhyme or reason They tested a friend of mine for MS, Lupus and others...they determinined she had CFS... I'm being tested now take all info on medical records to new doc print articles on symptoms of chronic Fatigue syndrome or Myalgic Encephalomyelitis tell new doc what old doc has already tested for...save some time I'm giving this advice because that's what I did and now am being tested Best of Luck...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • you and your mother in law should be tested for chronic fatigue syndrome that's what we call Myalgic Encephalomyelitis in this country what I've been trying to tell people is tha myself and several family members and friends are all having CFS symptoms they come and go, they get worse and better, they don't follow a pattern, no rhyme or reason They tested a friend of mine for MS, Lupus and others...they determinined she had CFS... I'm being tested now take all info on medical records to new doc print articles on symptoms of chronic Fatigue syndrome or Myalgic Encephalomyelitis tell new doc what old doc has already tested for...save some time I'm giving this advice because that's what I did and now am being tested Best of Luck...mommy cat:)To be perfectly honest, I don't believe in CFS or ME. My mother insists that its Fibromyalgia.... I see it all as a cover all diagnosis. The doctor's don't know what is wrong with you, so they just slap that name on it, much of the same way they do with the stress diagnosis. I don't know, but I truly believe that it is something more substantial than that.....
    Anonymous 42789 Replies Flag this Response
  • anje...I didn't believe in it either...yet now I'm being trested PLEASE READ LAST 5 PAGES OF "It's a mystery until we solve it" IT WILL CLEAR UP CONFUSION WITH FIBROMYALGIAPLEASE READ...YOU WILL BEGIN TO UNDERSTAND...AND SO WILL YOUR MOTHER FIBRO IS EVERYWHERE...EVERYONE. NOW LETS FIND OUT WHY READ READ READ MOMMY CAT
    mommy cat 1654 Replies Flag this Response
  • If you choose to believe in it, then that's great. That's your right. But as for me, I don't believe that it is a real condition.....
    Anonymous 42789 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • sorry:confused: :(
    mommy cat 1654 Replies Flag this Response
  • To me it sounds very much as though you're chronically ingesting something toxic. Do you live near any kind of factory or do you use well water? Have you had your ground/well water tested? Do you or have you ever used a lot of any herbal supplements, vitamins, or meds, especially any produced in other countries?The only other possibilities I can think of would be some kind of vasculitis, Lupus, or, if you also have skin thickening, then Scleroderma. (My mom has scleroderma). Others: Addisons/Schmidt DiseaseIf they give you a tough time about your past mental health, then don't change doctors. Find one you feel somewhat confortable with and then stick to him or her if you can. When you go to a specialist make sure you say you were referred by Dr. X. That should help some against the predjudices or thoughts that you could have Munchausen Syndome or whatever else they're thinking.Don't give up on searching for an answer, be stubborn.Good luck
    Anonymous 42789 Replies Flag this Response
  • Hi againThe time of day for the thyroid tests is important. My mom has border-line hypothyroidism. The first time she was tested, the results were in the normal range. They tested her again, and she was below the acceptable line. Thyroid hormones are, I think, lowest in the afternoon. Maybe ask for a repeat test and make the test in the afternoon. If you're also a borderline case, it would be more likely to show up then.Also, you should really ask your doc about lupus and scleroderma. My mother had scleroderma for 10yrs before she was diagnosed and her symptoms sound quite like yours. Her skin didn't actually thicken until many years into her illness. The hallmark symptoms are CRESTS: calcinosis (skin thickens), Reynaud's Syndrome (cold+blue hands, feet), esophageal reflux (or just problems swallowing), tele-something (the little capilaries on your face become easier to see -my mom doesnt have this, and Scerodactyl. She also lost a lot of hair. She has a wig now with a kind of net where she can brush her remaining hair through and mix it in with the hair in the wig. It actually looks really natural and nice. Nobody notices it's a wig. When it's cold outside she is freezing and when it's hot outside she melts, so that also fits your description. She also has some tummy issues, is tired a lot and has muscle weakness. Scleromderma and lupus overlap a lot, so you physician should test you for both...and recheck your thyroid!Again, Good luck
    Anonymous 42789 Replies Flag this Response
  • To me it sounds very much as though you're chronically ingesting something toxic. Do you live near any kind of factory or do you use well water? Have you had your ground/well water tested? Do you or have you ever used a lot of any herbal supplements, vitamins, or meds, especially any produced in other countries?The only other possibilities I can think of would be some kind of vasculitis, Lupus, or, if you also have skin thickening, then . (My mom has scleroderma). Others: Addisons/Schmidt DiseaseIf they give you a tough time about your past mental health, then don't change doctors. Find one you feel somewhat confortable with and then stick to him or her if you can. When you go to a specialist make sure you say you were referred by Dr. X. That should help some against the predjudices or thoughts that you could have Munchausen Syndome or whatever else they're thinking.Don't give up on searching for an answer, be stubborn.Good luckIt's funny that you asked that. Where I am living, we have about 10 factory's/warehouses surrounding the house on one side, and woods on the rest. We are the only house on the street. Also, we do have well-water, but I never drink it. I only use the well-water for showering and dishes. I don't even use it when I cook. However, my father has lived in this house for over 30 years and drinks it and has never had a problem. As for the supplements... I've used a few different types, but I have never stayed with the regularly ( I lose interest easily, lol), and I don't believe that any of them were foreign....I have an appointment to see a new doctor tomorrow, so I'm going to see what she suggests. I'm going to push to be tested for Lupus and Addisons, and have my thyroid checked again.As for Scleroderma, I haven't really had any problems with my skin. The only issues that I do have is the blue/puple hands, feet, and knees.Hopefully this new doctor will be a little better than the previous ones that I have been to before.
    Anonymous 42789 Replies Flag this Response
  • the reason for your blue hands/feet is mottling lack of oxygen to tissues...I have it too there are over 2 million people diagnosed with ME/CFSif it were not a real disease, the World Health Organization and the USA/CDC would not have it listed on diagnostic codes list many have not believed in it...until they were diagnosed Many thought it was something environmental...pollution--preservatives--tainted water they soon realized it is viral, contagious and very easy to spread/contract mommy cat:(
    mommy cat 1654 Replies Flag this Response
  • I thought that I'd post an update in case anyone was wondering...I went to see the new doctor, and I have to say that she seems to be MUCH better than any other doctor that I have ever been to in my entire life. I took in my list of symptoms and she actually sat down (never seen a doctor do that before), and asked me questions about everything that was bothering me.First off, she looked at my spine because I've been having horrible back pain for a very long time, and diagnosed me with mild sclerosis. It's not bad enough to require surgery, but it is the cause of my back pain. I'm surprised that no one has caught it before....Secondly, she asked me if I was on any medication, and I told her that I was on Xanex for my severe anxiety. She told me that it is strange to be put on Xanex for that, and normally doctors would prescribe antidepressants. I explained to her that I can't take antidepressants because they give me very severe mood swings, and she said that I may very well be Bipolar. It makes sense now that I think about it...She ordered to have all of my previous tests to be sent to her, and once she has reviewed them, she will begin a battery of her own tests.I told her that I want to be tested to Lupus and Addison's, as well as having my thyroid checked again. She didn't really feel that it could be Addison's, but she said that she would test me for it anyways, just in case. And she said that it is very possible that I could have Lupus, however, it is rare for someone as young as me. But she said that she was definatly going to test for it.So I will be going back in three weeks to begin the process.
    Anonymous 42789 Replies Flag this Response
  • Anje I am so happy it went well, yes I was wondering. Time will tell on the tests etc.. Glad you found a DR that will listen. You'll have to update after all your tests are complete. Did she give you anything (information etc) on what will make your back feel better? Cala
    Cala1234 57 Replies Flag this Response
  • No she didn't give me anything for my back. She didn't want to give me any medications until she received my history. She will start figuring everything out and helping me to feel better once I go back in a few weeks. It's not too big of a deal because it's bothered me for so long and I'm used to it. It's only really bad when I'm working. I work as a cashier, so I'm standing for 6-9 hours at a time. I just put in my two weeks notice since it's too ******n me physically. Anyways, there probably won't be much that she can do for my back because I don't want to take painkillers like Vicodin or anything. I get addicted to things very easily, and I refuse to spend my life being addicted to painkillers. I guess it's a lose-lose situation. I've been put on Ibuprofin 800's and muscle relaxers for the pain before, but they don't really help much. I don't know, but if she can solve everything else, then I can deal with my back with no problem.
    Anonymous 42789 Replies Flag this Response
  • I was wondering if someone who is familiar with Lupus can answer this question for me....Frequently, after I've had a stressful couple of days, my body just "crashes." It basically feels like I have the flu (without the vomiting and stuff like that), and I am so tired and generally uncomfortable that I can't get out of bed for a few days. Shortly after I regain my energy, I usually get hit with many illnesses. For example, the last time I was hit I got a UTI, a yeast infection, bronchitous, a cold, and an ear infection. It is fairly common to come down with a minimum of two illnesses at the same time.My question is, is it possible (if I even have Lupus), for my "crash" to be a result of a flare, and since my body is basically attacking itself, it leaves itself open to outside intruders? I just don't know how common this is among other people. It makes sense to me, but I wanted to see if anyone else knew.
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.