One year complete--Update on everything

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One year complete--Update on everything

Postby Watereddown on July 26th, 2014, 1:52 am

Hey everybody!

I haven't been around too much lately (been hanging around health anxiety boards instead) but I thought I'd come back and rehash some conversation with some members that I've gotten to know this past year. It was around this time last year when I stumbled upon this site. Between the muscle twitches and sensory issues, I was convinced I had MS/ALS.

Fast forward 1 year, 6 neurologists, and 2 Brain MRI's later, I'm still here. However, that doesn't mean I feel any better. If anything, I feel as if I've deteriorated more.

Being that it is summer, I've definitely noticed an increase in my symptoms, be it the twitches, the fatigue, and the parasthesia.

My question to everyone here is, do you guys notice an increase in any type of symptoms when exposed to the hotter temperatures of summer? This truly drives me crazy and makes me feel so isolated. I specifically brought up this heat intolerance to an MS specialist I'm seeing but he did not seemed too concerned, as he told me that he wouldn't call it heat intolerance (I told him my left leg/left arm begin tingling when i sweat/am hot). What do you guys think? Normal or not normal?
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Re: One year complete--Update on everything

Postby christo on July 26th, 2014, 2:27 am

I am almost at 2 years since I have noticed my twitching and this year I have seen a strong increase during summer. At first I thought it could be due to allergy, but now I am also thinking about hotter temperatures. Maybe there is not reason at all and this is now my new level, and maybe it will step down soon... No clue, but yes, I am like you.
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Re: One year complete--Update on everything

Postby Little Lost on July 26th, 2014, 7:38 pm

Dehydration causes twitching because it messes with your electrolyte balance by unbalancing their dilutions and hence concentrations ( this includes calcium, magnesium etc) , but this tends to be transient and resolves. Perhaps we BFSers are just a bit more sensitive to even slight changes, so we don't need to get fully dehydrated, just a bit less hydrated than normal to tip the scales and increase our twitching in the heat. Anyway that is just a random throw away thought of mine.
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Re: One year complete--Update on everything

Postby Xina535 on July 28th, 2014, 7:44 am

Watereddown wrote:Hey everybody!

I haven't been around too much lately (been hanging around health anxiety boards instead) but I thought I'd come back and rehash some conversation with some members that I've gotten to know this past year. It was around this time last year when I stumbled upon this site. Between the muscle twitches and sensory issues, I was convinced I had MS/ALS.

Fast forward 1 year, 6 neurologists, and 2 Brain MRI's later, I'm still here. However, that doesn't mean I feel any better. If anything, I feel as if I've deteriorated more.




I am also at my year point! I began twitching during July of last year. And you said it! I am just like you. Fast forward 1 year (after twitching): 2 neuros, 2 nerve conduction tests, 1 EMG, a couple of x-rays and I am still here. My twitching is so much LESS that I am not sure I can call myself a twitcher anymore. 8) Something I am enjoying for now while it lasts, however, I have other issues. A phase of pain seems to be in place now. Right hand pain, left leg pain issue has returned, and now intense pains under both of my feet (which came recently and gradually). My left leg is uncoordinated, feels 'sloppy' and I have stumbled a few times recently because of it, so I am still a freakin mess! Anxiety is back big time, but guess what, twitching still remains very low. I don't know what is going on (still going in circles) or what else I should do to feel better! :cry:

It is good to know I can sort of 'celebrate' with you, a fellow July 2013 BFser, who has issues still, but is still 'here' and not in a wheelchair. :mrgreen:
I have no real input about heat. With me, it is different, since during this hot summer, my twitching has reduced. But it would make sense if you are dehydrated and electrolytes get imbalanced. Just try to stay hydrated (drink even when you are not thirsty) and eat your bananas :)
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Re: One year complete--Update on everything

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