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How long for Dx? Neurological Symptoms?


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Old 12-19-2016, 06:12 AM   #1
glmccready
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How long for Dx? Neurological Symptoms?

Hello all,
I started having symptoms, just after a bout with Mono (EBV) when I was 20. I remitted and relapsed for 29 years before I was diagnosed (10 years ago).

Q2: Anyone else have problems with double vision, nystagmus, vertigo, tremors, tics, and extreme flu-like feeling (total body ache)??

I have to take alot of extra prednisone to help with these neurological symptoms, which sometimes last for months...40-50 mg.
Although it has been 15 years since I've been brain tested, all my scans, and spinal taps were normal. I think these other odd symptoms (besides the horrible fatigue) are really the reason my AD diagnosis took so long. My electrolytes have been a bit off many times, but nothing dramatic.

 
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Old 12-19-2016, 06:28 PM   #2
Diefen
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Re: How long for Dx? Neurological Symptoms?

I can't say that sounds familiar, but I can tell you that a sodium deficiency can really mess up your brain. Fortunately, some or all of the time the effects go away when your electrolytes are back on track.

Good luck.

 
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Old 12-20-2016, 12:54 PM   #3
glmccready
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Re: How long for Dx? Neurological Symptoms?

My electrolytes and BP both seem to be fine. I read about a case with autoimmune encephalopathy associated with Addisons. Usually a very rare side effect of Hashimoto's thyroiditis.
The good news is I respond quickly to steroids, 50-60mgs of prednisone, instead of my usual 10.

Last edited by Administrator; 12-20-2016 at 01:36 PM.

 
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Old 01-18-2017, 10:23 AM   #4
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Re: How long for Dx? Neurological Symptoms?

Quote:
Originally Posted by glmccready View Post
Hello all,
I started having symptoms, just after a bout with Mono (EBV) when I was 20. I remitted and relapsed for 29 years before I was diagnosed (10 years ago).

Q2: Anyone else have problems with double vision, nystagmus, vertigo, tremors, tics, and extreme flu-like feeling (total body ache)??

I have to take alot of extra prednisone to help with these neurological symptoms, which sometimes last for months...40-50 mg.
Although it has been 15 years since I've been brain tested, all my scans, and spinal taps were normal. I think these other odd symptoms (besides the horrible fatigue) are really the reason my AD diagnosis took so long. My electrolytes have been a bit off many times, but nothing dramatic.
Hey there, I am newly diagnosed - under two months..... but it has taken in my opinion at least 10yrs of mis-diagnosis blaming mental health for everything that has pointed to Addison's Even my doctor has said the same thing, but that's a complaint for a different day LOL.

I do occasionally get some of the things you mentioned, tremors, vertigo, body ache, extreme fatigue, to name a few. Some other weird things is I get something kin to carpal tunnel syndrome and numb fingers/hands even though it has been ruled out from being CT, I get a weird numb sensation in my head, daily headaches, restless legs.... it's no fun is it?

I am still getting my medication and everything under control though so I'm assuming a lot of these things will settle down once things level out a bit

Cheers,
K.

 
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