Discussions By Condition: I cannot get a diagnosis.

MS and other symptoms and Dr.s keep retesting

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: lizzi9983
  • November 23, 2007
  • 08:26 PM

I have firbomaygia but have symtoms that were never covered in that condition. I have extreme muscle spasms, seizers to the point that I had gone to a neurologist to be tested for MS. He did a MRI of my brian and he said it was fine. Monday I went to Rehab. Doctor and he was testing my reflexs and he said that they were very brisk, and then he looked at my fingers and he said they are seizering. He asked me to get MRI to look for MS again. He then added that I have a nervous system problem he just doesn't know what.
I also have problems with my joints and I have been tested for RA but was negative, he said I have the symptoms of that. I also am not able to lose weight at all when I have always been able to before.I work out 4-5 days a week for 1 and 1/2 hours and eat only 1500 cal. They tested my thyroids twice. The first time it was low and the second time it was high.But with in an alright range, but both ways only by 2pts. The tests were only 1 week apart.
What in the world is going on? My Primary is not understanding why I am upset all he wants to do is through a pill at it. Should I try an internest instead? Maybe an Endocradiligst, for the weight and thyroid issue? and a 2nd nerologist? But what are the chances that something would show up in the second MRI after only 6mo.?

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5 Replies:

  • Since you have both nervous system and joint involvement, I would suggest getting tested for Lyme disease. Lyme seems to really like to attack the nerves, joints and heart. Your MDs may not take this seriously, as it seems to me their education and interest in Lyme is minimal. Traditional medical testing for Lyme, IMO, is about useless. The best sources to use for testing are the Bowen Lab or Igenex Lab tests. www.bowen.org or - ooops - don't have the Igenex site in my database, try a search. They are in Palo Alto CA. You may also want to check out www.lymenet.org for info, chatting and access to Lyme Literate Docs. It is not just caused by tick bites.Good luck.
    Anonymous 42789 Replies
    • November 23, 2007
    • 10:49 PM
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  • You might have something called Hashimoto's Encephalopathy. It is a rare complication of autoimmune thyroiditis and can look like a lot of other things, including MS. I went almost a decade undiagnosed but worked up for MS many times. My worst symptoms were fatigue, migraines, and balance problems. But HE can produce a wide variety of symptoms- including seizures- and each patient looks different. I also had brisk reflexes and other signs on exam. HE is highly treatable with steroids.The sad thing is that HE is a fairly newly recognized disease and so most doctors do not know about it. Most neurologists still do not know about it. The other sad thing is that most patients who have it are "euthyroid"- meaning they have normal thyroid hormone levels. And so their doctors never check their thyroid ANTIBODY levels, which is how HE is diagnosed. I had my thyroid hormones checked over and over and over and was always told my thyroid was fine becasue they were normal. It wasn't until my 8th neurologist checked my thyroid antibody levels (to thyroperoxidase and thyroglobulin) that I was correctly diagnosed. A subsequent ultrasound of my thyroid gland revealed that it was full of tiny nodules from the autoimmune attack.You mentioned that you have fluctuating thyroid hormone levels. This is highly consistent with autoimmune thyroiditis. Have you had your thyroid antibodies checked? If they are positive, I'd suspect HE. Be forewarned that most doctors and neurologists have never heard about it. There are growing numbers of case reports in the medical literature- every week or two I see another article posted in PubMed.Good Luck to you. I hope you find out what you have soon. The worst part can sometimes be the not knowing!
    Anonymous 42789 Replies
    • November 26, 2007
    • 09:31 PM
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  • I feel horrible for u! You know it is very frustrating to go thru this because that is kinda something similar to what I posted. Have u had a spinal tap done yet? Also, what made them believe u might have MS? Did u have spine and lower back mri? Take care and gl!
    cbalcomgo 38 Replies
    • November 26, 2007
    • 11:40 PM
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  • I have asked for the spinal tap and I was told no. The Dr. thinks I have MS based on the reflexes, seizuing and I dont know why else. but he did.
    lizzi9983 35 Replies
    • November 27, 2007
    • 07:07 PM
    • 0
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  • You might have something called Hashimoto's Encephalopathy. It is a rare complication of autoimmune thyroiditis and can look like a lot of other things, including MS. I went almost a decade undiagnosed but worked up for MS many times. My worst symptoms were fatigue, migraines, and balance problems. But HE can produce a wide variety of symptoms- including seizures- and each patient looks different. I also had brisk reflexes and other signs on exam. HE is highly treatable with steroids.The sad thing is that HE is a fairly newly recognized disease and so most doctors do not know about it. Most neurologists still do not know about it. The other sad thing is that most patients who have it are "euthyroid"- meaning they have normal thyroid hormone levels. And so their doctors never check their thyroid ANTIBODY levels, which is how HE is diagnosed. I had my thyroid hormones checked over and over and over and was always told my thyroid was fine becasue they were normal. It wasn't until my 8th neurologist checked my thyroid antibody levels (to thyroperoxidase and thyroglobulin) that I was correctly diagnosed. A subsequent ultrasound of my thyroid gland revealed that it was full of tiny nodules from the autoimmune attack.You mentioned that you have fluctuating thyroid hormone levels. This is highly consistent with autoimmune thyroiditis. Have you had your thyroid antibodies checked? If they are positive, I'd suspect HE. Be forewarned that most doctors and neurologists have never heard about it. There are growing numbers of case reports in the medical literature- every week or two I see another article posted in PubMed.Good Luck to you. I hope you find out what you have soon. The worst part can sometimes be the not knowing! Thank you so much I will get checked for that. Thanks and I am sorry for you but at least you know. and you are so right the not knowing is just as bad.
    lizzi9983 35 Replies
    • November 27, 2007
    • 10:40 PM
    • 0
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