Scared out of my mind. Please help.

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Scared out of my mind. Please help.

Postby jerbear_13 on June 13th, 2014, 1:55 pm

I have not been officially diagnosed with BFS as of yet but in my neuro notes, he chalks my symptoms up to anxiety.

In early January I had been dealing with a globus sensation in my throat for about a month when I began twiching all over my body after exercising one day in late February. I saw my doctor who took some blood and referred me to a neruologist. My blood tests came back showing that I was deficient in both vitamin D and B-12 so I began taking suppliments. When I went to the neurologist, he did a nerve conduction study and an EMG both came back normal. He then told me to start taking Vitamin D, Magnesium and calcium. Some days it helps better than others. He also told me to continue to work out because it is good for the muscles. Anyways, I then began having some trouble swallowing about a couple weeks ago nothing serious, just when I am relaxing. When I drink or eat it is totally fine. Went back to neruo, they did an MRI of my brainstem (While he assured me it wasn't ALS) the MRI came back normal, had a barrium swallow and that came back normal as well.

I was told to treat it as acid reflux even though there wasn't much evidence to suggest that. Now recently I have started to develope pain in both my calves. They aren't cramping or ultra flexed or anything. They work just fine and the muscle can relax but they ache so bad. I have tried literally everything. Magnesium, Tylenol, Ibuprofen, heat and cold, stretching (does help a little) tiger balm and so on. I went to the ER the other night because they hurt so bad. The ER did an ultra sound of my legs, tested my basic metabolic panel, CBC Auto Diff and CPK. Everything came back normal. My CPK was 106 out of 400. I am not sure what to do. Is this something anyone else experiences with BFS?

PLEASE give me some advice or anything that could help calm my nerves or pain. I am going to start a really healthy, organic and hypoallergenic diet today (I've read that helps some people) and I am supposed to be meeting with an ALS specialist in a few weeks to see if he thinks this is BFS (I am almost sure it is)
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Re: Scared out of my mind. Please help.

Postby leaflea on June 13th, 2014, 11:58 pm

I think you answered your own question. No weakness, normal EMG, no atrophy = NO ALS. You have some odd symptoms, true - but nothing that suggests ALS. Same here - tremors, numbness, and pain and all kinds of wierd things that move, change and migrate - While it stinks, the great news is, ALS does none of those things. The ONLY commonality really is twitching and ALS is not a disease of just twitching. BFS is all about odd symptoms with really no explanation. Having a bit of a flare up myself...then realized I had stress last night in the ER with a friend who I am really worried about and got little sleep. Triggers it seems.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Scared out of my mind. Please help.

Postby jerbear_13 on June 14th, 2014, 2:42 am

I am just learning that cramping/spasticity can be part of BFS. Over the last couple days I have had some wicked cramping but only when I stretch a certain way or when I flex. I have to keep waiting to see an ALS specialist so I am just trying to get comfort from these forums in the mean time. Thank you for replying. It doesn't seem like many people want to reply to me.
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Re: Scared out of my mind. Please help.

Postby Yuliasir on June 14th, 2014, 3:23 am

not many, really, becasue there is nothing striking new in your situatiuon :) maybe this should be a kind of reassuring for you.

I have positional cramps in my legs and sometimes in hands and other muscles for many years already. They are not pleaseant, scary but obviously harmless. I had them before twitching and I know it could be better or worse but never gets to the level of true worrysome spasticity. Just cramps. Just frightened, tired or not slept enough.
worse ever cramp session I had two years ago on vacations! holy crap, it was so scary and so annoying...
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Re: Scared out of my mind. Please help.

Postby jerbear_13 on June 14th, 2014, 3:46 am

Are they painful cramps?
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Re: Scared out of my mind. Please help.

Postby Yuliasir on June 14th, 2014, 3:59 am

sure. on vacations I had such a painful one in the upper chest and neck muscles that I thought I had my collar bone broken. It was sore for about 20 hours after the cramp.
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Re: Scared out of my mind. Please help.

Postby jerbear_13 on June 14th, 2014, 4:39 am

Yikes. My legs have just been hurting for weeks now but there isn't weakness or anything. I am so confused. Haha. I also can't seem to get anyone to give me neruological pain meds. Just percocet and other crap. Sigh.. thank you for replying!
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Re: Scared out of my mind. Please help.

Postby Yuliasir on June 14th, 2014, 4:54 am

in my country usually vitamine B group formulations are used to treat neurogenic pains. helps quite alot. But the dosage should be really higher than in any common supplement - and I see you are deficient as many of us. Check of your supplements had helped to rise it back to normal level. Some of us seemto have defect in metabolic system and make us insensitive, so vitmanes just pass through our guts withoiut doing the job, I think it is related to folic acid role - so probably addition of folic acid may also help.
try to ask if you can have high dosage vit B and magnesium pills like Magne B6 Forte etc. usually it had heled me. Some people also found gabapentine acts agains such neurogenic pains, but anyway talk to your doctors. Magnesium and B6 should be taken for about a month to get effect, if no effect, then no matter to take more than for 4 weeks.
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Re: Scared out of my mind. Please help.

Postby leaflea on June 14th, 2014, 5:13 pm

jerber, yes, the cramps can be part of both. However, my neuro (ALS specialist) was unconcerned about cramping even though he asked me about it. I just wrote about this on a thread twitchydoc started. It did not add to any suspicion he had about ALS because he was positive I didn't have that...just wanted to know if cramps were part of my bfs. And it wasn't just foot and calf cramps I had (and have had for years)...I had them in my abdomen where I had some wicked twitching going on. I also have had a couple in my chest that almost sent me to the ER thinking it had to be a heart attack. BFS is strange, but it won't kill you even if it feels like it will.
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Re: Scared out of my mind. Please help.

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