A potential diagnosis has revealed itself

[jumpinjiminy]

And the lab work is pointing to a possibility of Hashimoto's encephalopathy. Finally, a big clue. It is the current suspect, but not enough clinical evidence to start treatment yet. It seems so cruel. I feel like complete crap much of the time and am ready to go in begging for steroids. I was so hoping to get treated before the holidays. *sniffle*

But at least we have a direction. The plan is to contact my GP and see if he can speed things up.

[ree221]

Hi There,

I have been sick for a while; I've been to 4 neurologists. It was thought that I had MS but didn't meet all the criteria to go on disease modifying drugs.

Four years of complete hell between feeling sick and having no answers for what ails me. Well, I stumbled upon a MS Specialist at NYU in Manhattan. He confirmed for sure that I DO NOT HAVE MS. But he doesn't know what I do have! Ugh...

The only thing he sort of suspects is Hashimoto's Encephalopathy. I already have Hashimoto's Thyroiditis.

Specialist ran blood work and my antibiodies for the disease came back elevate which indicative of H.E. I pray that is the answer.

While I don't want a disease by any means, I would be most grateful for the search to be over. I'm so tired and so sick. And tired of being sick and tired. LOL

I have the same symptoms as you plus a plethora of others not even listed for H.E. so I'm a bit wary.

Good luck to you. Keep up posted when you get to the bottom of it. I'm in your corner and truly can relate to the frustration.

Ree

[jumpinjiminy]

I get very bad headaches from wine. In fact, the day I went in the sauna that set this whole thing into epic proportions, I had had a half a glass of red wine. Not sure if it played a part, but with the more recent reactions to sulfate based food additives, it probably didn't help.

[Deb61]

Many people with autoimmune diseases like lupus are allergic to sulfa based drugs.  My guess is that your doctor tested you for lupus and a whole bunch of other autoimmune diseases to rule out MS.  I bet red wine does a number on you with naturally occuring sulfates in it.  

[jumpinjiminy]

Thanks, Pam. :-) He hasn't diagnosed me with anything thyroid, nor has he suggested doing so. He's strictly operating in the land of neurology. But he wasn't hopeful about finding anything in a spinal tap - as the big flare is fading into the past. His other suggestion was a referral to a neuroimmunologist. I may call back asking for both tomorrow just in case.

For the rest, it is time to see the GP for a consult. He would initiate any further thyroid workup and management. Maybe that in itself would help me feel better.

The neuro had a couple of issues making a definitive diagnosis. One being the other antibody showed up in the normal range. The high one was the TPO antibody. The other issue was that relapses don't happen as frequently as mine were. For two months, I had a new attack every week. Then skipped several weeks in October, and had another last week that waxes and wanes this week.

Part of what might be going on is I seem to be reacting to sulfates. It seems (haven't pinned this down for sure yet, but there seems to be a pattern developing) that every time my fever spikes and I start feeling horrid, there has been a sulfate/sulfite ingestion within a day or two of the temperature increase, sometimes within hours. When the big flare up hit in August, I was being treated with a high dose sulfonamide. A week later I went in the sauna and Kablam! Huge flare up that came on fast like a widespread MS attack. It was everywhere.

The other thing that seems to get it stirred up are EDTA and ALA. These two things (heavy metal chelators and sulfates) lead me to wonder if there is a heavy metal sensitivity involvement somewhere, but I have yet to propose this outlandish idea to any of the professionals helping me. They would probably take me as some nutter from outer space if I brought up the subject.

[drsdonthelp]

Hopefully it will not take several years to get a diagnosis and to get treatment!!
Thyroid issues are no joke and the doc's should know better than to make you wait.
Good luck to you, and hope you are feeling better soon
Pam

[jumpinjiminy]

Hi Deb. I'm not being treated for anything other than Vitamin D deficiency and muscle spasticity. There hasn't been a thyroid disease diagnosed yet. Since the neuro tells me it could take several years to get a diagnosis of the H. enceph, I plan on bypassing that scene altogether and seeing if the antibodies are also attacking the thyroid gland. I'm not content to wait until there are EEG abnormalities to arrive at a diagnosis and treatment.

Thank you for the well wishes.

[Deb61]

Best of wishes for finding a correct speedy diagnosis.  Are you being treated for thyroid disease?