Hi Ramona, I'm a patient, so my imput is just research opinions. That definately sounds like a type of peripheral neuropathy. Depending on the disease it is caused by, determines the medical term they use for it. Hashimoto's can cause the encephalopathy but medical sites I read, stated it is very rare. Hypothyroid people commonly have some neurological symptoms but not usually as severe as yours. Diabetes can also cause peripheral neuropathy, so you may be getting it from both diseases and the combo makes it worse.
I'm sorry about your problem and hope you get a clear diagnosis and proper treatment!
Thanks, JimLow. I do have PN in my feet and I take Neurontin for it. It could be causing the ataxia, but probably not much of the other stuff, especially the cognitive problems, facial and arm tingling and myoclonus.
I was mainly curious if symptoms as "mild" as mine might be Hashimoto's encephalopathy, or if it is always diagnosed with severe psychotic events or coma.
I am getting to the point of realizing that "this is going to be my life", and I need to make the most of it. Hey, after all, I need to stay home more anyway, right? Can't go many places due to high gas prices!
Blessings
Ramona
Ramona,
This is a difficult situation. Your history sounds like MS (what I was thinking before the Vandy doc comments were mentioned). HE is a debatable entity - many academic endos do not believe it exists. Unexplained neurologic symptoms are common and the presence of thyroid antibodies is common (up to 10% of women in some studies) - haveing both does not mean they are related.... There are some features of lumbar puncture results as well as special brain nuclear imaging (PET/SPECT) that are suggestive. The treatment is steroids - typically high dose (certainly that would aggravate high sugar levels). Is your neurologist planning a repeat LP? If so, one study suggested checking thyroid antibodies in the CSF - also, repeating the MS studies on CSF may help. If you are hypothyroid, then consistently keeping the TSH around 1 is important.
I have given high dose steroids once to a patient thought to have HE - no dramatic improvement and the other tests that may have supported HE were inconclusive; however, there were limited rx options, so we tried steroids....her main symptoms were memory/cognitive.
Good luck
Thanks so much, Dr. Mark. The reason we have not done a repeat LP is that I have had horrible problems with them in the past. Not with post LP headaches, but with actually being able to take the sample (epidurals, too - it was so diffcult that I had fifteen needle holes in my back after one epidural attempt. They finally used a general for the c section). Apparently I have some kind of physiological problem that makes that very difficult. I am to the point of finally agreeing to another one, however.
My local neuro is starting to lean back towards MS, since I have recently noticed that lowering my chin to my neck makes the myoclonus MUCH worse right away, and then it goes back to normal shortly after I raise it. Although I do not have the electrical shock feelings, she wonders if that is not related to LHermittes.
Either way, MS or HE, the treatment is going to be steriods, isn't it? With HE it would just be a much higher dosage?
Thanks again. I am really finding out how diffcult neurological problems can be to diagnose! Our bodies are so awesomely complex, aren't they?
Blessings
Ramona
The steroid regimens vary from doc to doc - both are fairly high dose (ie 60-80mg prednisone/day or even 500-1000mg solumedrol IV a day "pulse" for a few days). L'Hermitte's sign is the electrical sensation with bending the chin towards the upper chest and your symptom may be a variant - this is associated with MS.