progressive symptoms

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Re: progressive symptoms

Postby nrwtwitcher on July 2nd, 2014, 1:28 pm

Hi all, sorry it is me again... I am so scared. My feet and calves are twitching extreme. Every time when I try to lay down my feet are cramping and twitching away. To sleep is extreme difficult for ne. Is there anyone else with extreme strong twitches in feet and calves??? Mine are 24/7, they are visible and extreme palpable. Please answer, because I do not know what to think. Please... Thank you so much.
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Re: progressive symptoms

Postby Xina535 on July 2nd, 2014, 3:55 pm

Hi, I do not have the severe twitching and cramping, but, I believe other people on here do have it very bad.

I am sorry you have this. I can understand how it affects your sleep, but I am totally with someone who said that sleep depravation makes everything worse. This is so true.

My only advice or ideas are to 1) force yourself to sleep, by drinking a strong sleep tea or something else from your doctor. Even if it is just once. 2) for people who have extreme cramps, try to exchange videos to compare. I think you saw a video of someone's twitching and felt better since it looked like what you have and 3) go to the hospital if it gets so bad and you are desperate. They will help you rest, and hopefully can advise further. You will be in safe hands.

Thinking of you!
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Re: PLEASE HELP progressive symptoms

Postby nrwtwitcher on July 3rd, 2014, 7:11 am

Hi all, thank you Xina. Really nobody else with similar symptoms? That scares me. Does it sounds BFS or does it sounds anything sinister? Thank you so much.
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Re: progressive symptoms

Postby Xina535 on July 4th, 2014, 7:11 am

Hi - because of lack of response from people, I do not think this means you are alone with these symptoms. I believe several people have extreme feet and calf twitching. I think someone posted videos on their severe twitching and I cannot remember exactly, but I think you commented on it saying something like that is what you also have and it made you feel better that someone else has the same. I tried looking for the thread but I ran out of time. It could have been someone else.

I would think that if multiple neuro docs checked you out, even the ALS specialist, and saw what was happening and tested you for sinister stuff and it came back ok, then I would not consider it sinister. I could be BFS or something else, I cannot say, but if the doctors ruled out sinister stuff, then I would agree with them.

Sometimes I feel that so much of what is happening to us is just grouped into 'BFS' because our symptoms are unexplainable (or the reason is not yet found) and they are benign, meaning they do not seem to progress like the known MNDs. BUT does that mean that we all really have BFS? 1) maybe the real reason for our symptoms is a known disease, but it just not yet found, like auto-immune or whatever or 2) maybe there is no disease even found for what we have - maybe we all have different things going on that could be called so many diseases, but they don't have the names/diseases yet established. So there is definitely no real treatments either. From what I understand all money goes to researching sinister MNDs and Parkinsons, etc., and I agree with that, but I also think it leaves us 'BFSers' out of mind/neglected, to a certain extent. It's definitely scary.

Maybe the symptoms we have are just from anxiety alone? We are examples of how anxiety can fry your nervous system? I wonder these things, and many more. These symptoms cause so much worry and bizaare thoughts.

I truly hope you find some sort of method or treatment for the extreme symptoms you have. Maybe try to connect again with people on here who have it as extreme as you?
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Re: progressive symptoms

Postby German2 on July 4th, 2014, 9:31 am

Hi!

I totally agree with Xina! There might be a lot in our bodies, which merely can't be gripped completely...As I told you already, my new symptom is that I can hardly feel my right leg sometimes. This scares my like hell!! Really. Today I phoned with my hashimoto doc, who is well aware of autoimmune deseases, because she has three of them on her own, and some overlaps, which can't be completely be identified, because science is not far enough...she thinks a lot of that crap come from infection (bacteria, virus ) and certain immunization (I had the pig flu immunization which is really bad for immune system - more than one doctor has told me know), letting the immune system just freak out.

It is just a (good or bad) coincidence, that in my case one neuro found antibodies against my nerve system and reacts with a medication (altough there is no name for the desease - maybe some shortenend Guillan Barre, with no full clinical picture). All the other 11 neuros/ambulances did not even test this...And found nothing. And I know already, that the autoimmune research ist just in the fledling stage. So maybe there are a lot of other cases around here, where s.th. autoimmune is going on. I am sure, in many cases, there is s.th wrong with the immune system. It often starts after infection. (I made this experience too).
So if the neuros don't find any hints to a neuro muscle desease, then we have to learn to accept. And I know by myself, that does not work all day...Sometimes I just freak out again. Like today...
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Re: progressive symptoms

Postby Tohapane66 on July 4th, 2014, 11:52 pm

Hi Nrwtwitcher,

I certainly do have similar symptoms to yourself - non stop twitching in my feet and calves. The twitches in the feet can be pretty strong - particularly in arches and bottom of the foot. I also often get pins and needles, feet asleep etc. I do not get the cramping though.

I remember speaking to you around April, when my toes were moving non stop. I have for the past month or so been trying out acupuncture. This appears to have had a positive impact. The twitching intensity has calmed and there are very brief periods when it seems like no twitching at all in feet and calves, or maybe I just don't notice.

I can't say for sure it was the acupuncture that has helped or just a natural cycle. But I did notice that when I initially started the acupuncture when the twitching was strong that the facsiculations calmed down a bit after the session.

I don't know if others have tried acupuncture, but it would be interesting to know what others have experienced from this approach. I am certainly going to continue with it as I feel like it has benefited.

Tom
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