Vitamin B-1 deficiency - interesting symptoms

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
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ViewsAskew
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Vitamin B-1 deficiency - interesting symptoms

Post by ViewsAskew »

I saw this post on the Celiac Forum I read. I thought it fascinating that many of these symptoms could be mistaken for RLS or RLS with neuropathy. Also interesting was the several doctors missed it. It's a long story - I've moved the symptoms to the top.

"If anyone is interested this is a complete list of my symptoms.

muscle weakness in arms and legs,
no balance,
slurred speach,
no longer able to concentrate,
walking changed,
period of intense exhaustion that would pass after resting for a hour or two,
felt buzzed most of day,
poor memory,
spaced out most of day,
light headed
what felt like small electric shocks in mucles in legs.
pain\ache in feet
low back pain
pins a needles in hands and feet.

Just a update as this might help others. I cannot find the original thread I started last year. So I started a new thread. I have been GF 5+ years. For the most part I have been healthy, never get colds and flu etc. I use to work out every day. In Novemeber 04 I started having problems running. I just could not run over 20 minutes no matter how fast or slow I ran. I also started getting major pain in my feet. I went to a foot doctor and he gave me orthotics (sneaker implants). No help, I had to stop working out completely. Fast foward to April 05. I was in Amsterdamm at a conference. I noticed that I was having problems walking to and from the conference venue. Older people 60+, I am 39, were just blowing by me walking on the street. About this same time the brain fog set in. I felt like I was buzzed. I also started to loose my balance, memory loss and muscle weakness. I went to my GI dr because I was also having some stomach pain. I went to the GI because I trust him, he dx'ed me with celiac. I asked him to do a biopsy just in case I was getting gluten even though I did not think this was the case. Just before leaving I mentioned that I had brain fog and was wondering if any of his other celiac patients had complained of it. He did what I would describe a drunk driving test on me and freaked out. Told me to see a neurologist, called one and got me in the next day. So I see nurologist(1) the next day. I asked him to check my B12 since so many on this board seem to have this problem. That came back fine. In fact all of my blood work came back fine, perfect health. Next was the MRI and MRA of my brain. This whole time my symptoms keep getting worse. Muscle twiching started along with all of the other symptoms. I also started having problems speaking, slurred words etc. Neuro 1 referred me to Neuro 2 for an EMG to rule out ALS. Thankfully that test came back negitive. During this time I also had the GI tests run biopsy, gastric emptying, sonogram etc, all test come back normal. Neuro 1 is at a loss. He proclaims that it anxiaty. I said "but I don't have anxiaty" he did not want to hear that so he gave me the name of a neurologist at GW university. I go to see Neuro 3 and the university. He reads my EMG report and proclaims I have carpal tunnel syndrome. My wife has that so I was fairly familar with the symptoms. My symptoms were closer to MS and ALS as it effected more that my hands. I was stunned and declined to make a sceond appointment. I have had it with tests it's been 5 months and lots of $$ and I am just sick of having doctors guess. At this point it is August or 05. I get up one day and the brain fog just cleared all the other symptoms were still. I figure screw it I not going to any more doctors until it gets so bad that someone can figure it out. Fast foward to Jan 06. The brain fog is back and worse then ever. I tell my wife I can't seem to concenetrate at all. I am having problems doing basic math. She convinces me to see yet another neuro. reluctantly I agree. The night before my appointment I walk down the steps to my basement and I cannot get back up the stairs. No strength in mt legs. I am also brushing my teeth with two hands as I can seem to hold a toothbrush any longer. The next day I vist neuro 4 with almost no hope but I figured I would try. He runs the same tests in office everyone else has ran he asks about celiac tell him the whole story. What I can eat and can't. He agrees to get all of my tests form the previous dr's so he does not repeat unnessary tests. I sign the forms to have all the tests transferred. On the way out he says call to make an appointment in two weeks we should have all the tests from the previous dr's by then. In the mean time I want you to start taking B1 everyday, I give him your must be friggen crazy look and he responds with please just humor me.

I go home and start taking B1 every morning. On the sixth day of taking 150% RDA of B1 my brain fog starts to clear. Over the next 2 days my strength come backs no more pins an needles in my hands I can hold a toothbrush again. Three weeks later I go to the 2nd appointment with neuro 4 and tell him I am doing very well on B1 all of my symptoms have dissapeared. I feel like I felt after I first went GF, normal. So I ask him B1 deficiency is beriberi, are you telling me I had beriberi. He laughs and say's yes. We went over all of my blood testing from previous drs and no one ever checked my B1 level. I said that was a pretty good guess and he say's as soon as I told him I had celiac he suspected a vitamin deficiency. My symptoms closely matched dry beriberi. So he took a guess.

On the bright side 6 weeks into taking B1 I have started working out again for the first time in over a year and feel fine. I also need to listen to the wife more as I would never have gone to the 4th neuro. If your not convinced with what a doctor tells you get a new one."
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Thank you Ann for always finding ways for us to think outside the box, your efforts are truly appreciated!

The reinforcement that if you are NOT satisfied with your current medical care find another doctor, do not give up is just what I needed today. Frustration levels can run high when dealing with chronic illness, yet it is the support and reinforcement of these support groups that keeps me going!

(((((((((((BIG HUG))))))))))))

Love Hazey
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.

Music can be made anywhere, is invisible and does not smell. --W H Auden

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