Search found 41 matches

by SnappyK
Wed Sep 05, 2018 2:17 pm
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

I was tested about two years ago--colonoscopy and upper endoscopy. No sign of any sort of celiac issue. The doctors have absolutely no idea what's going on, other than maybe my immune system is generally becoming more over-reactive and as it does, I am having stronger reactions to certain foods? I'm...
by SnappyK
Fri Aug 17, 2018 10:50 am
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

Hello! Can't believe it's been almost a year since I posted. The last time I updated you all, I was in full remission from my weird cavalcade of symptoms and feeling fantastic. I thought I had all the answers. Um...NOPE. My symptoms largely came back late last year, not as severe as before, but it w...
by SnappyK
Wed Oct 25, 2017 11:50 pm
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

I had no idea gelatin was in so many things I was consuming. Most of my medications and vitamins had gelatin. When I did my elimination diet, I stayed on my prescription meds only and stopped taking everything else. The amount of gelatin in my prescription meds was small enough that I was nearly asy...
by SnappyK
Mon Oct 23, 2017 8:21 pm
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

Hey there! I'm back again. :) Seems like about every six months I have another update for you. After I went dairy free in March, I started slowing lowering my meds (under doctors' supervision). At lower doses of my meds, I started experiencing some pain and some body spasms, mostly in my legs. I sto...
by SnappyK
Thu Apr 27, 2017 12:29 pm
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

Hello again to all of you! It's been six months since my last update and I hope you are all doing well. I've been through lots more tests and seen lots more doctors during that time, and I finally have an answer...sort of. Four doctors have now concluded that I've have mild MS since 2010 or earlier,...
by SnappyK
Sat Oct 22, 2016 1:14 pm
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

Thanks to all of you for your kind words. The dyskinesia diagnosis I got is extremely rare, with a prevalence of around one in one million. I finally got it because I had my husband take videos of me having the body spasms, and I made my own videos of the facial spasms. Then I took an iPad with the ...
by SnappyK
Sat Oct 22, 2016 1:17 am
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

Hello all! Long time no talk. :) I've had a million tests since I last posted in June. The four neurologists I'm currently seeing all agree that I have an overactive immune system and I have inflammation in my central nervous system, but so far I still don't have a diagnosis. However--in August I sa...
by SnappyK
Thu Jun 30, 2016 12:21 pm
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

Hello! Still trying to figure out what is wrong with me. All my GI tract biopsies were completely normal--no sign of celiac disease, no inflammation, etc. I am still suspicious of a food sensitivity, but I just finished a course of antibiotics yesterday and I didn't want to start eliminating food gr...
by SnappyK
Sun Jun 19, 2016 6:14 pm
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

Thanks for all of your messages about my likely CFS diagnosis. I really thought it was the answer. It turns out that, surprise, surprise, the real answer may be more complicated. Last week I had to do a liquid and Jello diet for almost 48 hours to prep for a colonoscopy. On the second day I felt so ...
by SnappyK
Mon May 30, 2016 1:10 pm
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

I might finally have an answer for all my health issues. My latest random symptom is that I have been getting sore throats that just come and go, but what makes them really odd is that my throat is only sore on the right side. I was Googling for that last night and came across several references to ...
by SnappyK
Wed May 18, 2016 2:58 pm
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

yawny, thanks for your email. I reached out to Dr. Holman two weeks ago at his old and current company email addresses but have received no response. But your suggestion gave me the idea to finding an independent expert to review my case, and I ended up finding a web site that offers such a service....
by SnappyK
Wed May 04, 2016 11:33 am
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

Thanks, badnights. I know that yoga would be helpful, but he told me not to do any exercises if I'm hurting. And since I've been hurting all the time...sigh. Now that I'm on Neurontin, the pain is greatly reduced and I can start exercising. I'm already doing physical therapy for my neck and in a few...
by SnappyK
Wed Apr 27, 2016 8:06 pm
Forum: General Topics: RLS/WED
Topic: Symptoms get better at night?
Replies: 6
Views: 418

Re: Symptoms get better at night?

Thanks, Polar Bear. My case was accepted by Johns Hopkins and I see one of their neurologists in July. In the meantime I am seeing a rheumatologist and other doctors to try to find an underlying cause for my symptoms that would explain why my symptoms get better at night. All my recent tests came ba...
by SnappyK
Wed Apr 27, 2016 1:09 pm
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

Sometimes I just have to laugh because this whole situation is so absurd. The new theory is that I've been having thyroid problems for a while. The thyroid problems caused the initial GI tract issues, which caused a magnesium deficiency, which caused (on its own or in combination with the thyroid is...
by SnappyK
Mon Apr 25, 2016 11:07 pm
Forum: General Topics: RLS/WED
Topic: RLS or something else? Part 2
Replies: 84
Views: 15357

Re: RLS or something else? Part 2

I saw the neurologist again today and he still isn't being very helpful. He acknowledges that I have a wide range of symptoms, some of which he knows are not caused by neuropathy, but he does not offer a reason for them, and until I pressed him, he offered me no treatment. He keeps trying to convinc...

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