progressive symptoms

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Re: progressive symptoms

Postby Yuliasir on April 23rd, 2014, 7:03 am

nope not ALS. Either circulatory trouble or impoper position causing nerve compression. Mine goes asleep when I sit on it and sometimes even when I just sit pressing my leg to the table (suppose I press the nerve in that way). I also have a habit of sitting with the one foot pressin on the other in the ankle and sometines it also causes numbness in compressed feet.

In ALS people usually do not experience sensory issues like hot or cold sensation, shocks, numbness, hypo- or hyperesthesia. This is rather common for polyneuropathy (of whatever origin). they just feel their pretty healthy limbs are useless. Sometimes they suffer spasticity issues which are painful but usually it is quite clear (distorted position of limbs, inability to flex etc.).
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Re: progressive symptoms

Postby nrwtwitcher on May 1st, 2014, 7:25 am

my feet fall asleep quite often during the day. Has anyone similar issues? Thank you very very much.
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Re: progressive symptoms

Postby raindog on May 1st, 2014, 3:48 pm

nrwtwitcher wrote:my feet fall asleep quite often during the day. Has anyone similar issues? Thank you very very much.


Stay strong my friend , i have severe cramping very much every day all dayand if anything i have more nerve pain now than ever before . Fortunately this eases into a warm fuzzy almost pleasant like sensation using a weed through a vape.

I honestly dont see to anything to concern me in respect to ALS you have to keep your mind away from ALS and learn to get on with things that you would enjoy doing before this started. It can be done honest. :wink:
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Re: progressive symptoms

Postby leroyb on May 2nd, 2014, 7:30 am

Limbs falling asleep has been one of things since this all started. I sleep in weird positions but it never seemed to happen before or at least I never noticed it.
It waxes and wanes, some weeks my arm would fall asleep just be having the elbow bent while on the phone. Other weeks no sign of it all.
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Re: progressive symptoms

Postby emmie.s on May 2nd, 2014, 4:23 pm

When my anxiety was at its worse about a year or so ago, my hands and arms fell dead asleep several times a night. I also had cramps and cramp-like feelings. It is all part of the BFS picture, so no worries. I think what was going on was that I would fall asleep too hard, because I was exhausted from anxiety and waking up several times a night. My feet have always fallen asleep too, and incidentally Im sitting on the floor with my left foot under my right leg, and wouldnt you know it, its is completely asleep now after typing this.
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Re: progressive symptoms

Postby nrwtwitcher on May 3rd, 2014, 7:13 am

Dear Raindog, leroyb and Emmie: Thank you so much for your words. It is for me an important fact to be not alone with this strange symptoms. Unfortunately got my symptoms more worse over the last few days. My feet and calves are twitching non stop.Raindog, I have read that you have a long time experience with strong twitches and cramps. My twitches looks like the twitches on your videos...
Before all this startes, I had burning calf and feet muscles. This was in September, last year. Than the twitching startes an gets worse over the last 7 months. Last year I had often burning and stiff feet, the first few minutes in the morning, when I stand on my feet. Emmie and leroyb, it`s good to know, that you have had also "asleep limps". What would I done without this important forum? Thank you, I hope I have also - like you - nothing sinister, and I hope that I can ignore this symptoms one day. At the moment it is incredible, because the twitches are so strong and my feet are going to cramp every day, also when I am moving... After a short time on my feet, they are aching...
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Re: progressive symptoms

Postby ShawnW on May 3rd, 2014, 7:14 pm

During my worst time in Jan...my right arm kept falling asleep at night...not matter what position. I was thinking thoracic outlet syndrome...cervical disc issues...had no idea what was going on. It happened to me last week after a couple months of normal. I wish I could explain this stuff medically. Even with my medical training I'm stumped about half the stuff that goes on with me. I just chalk it up to hyperexcitable nervous system stuff and move on. BTW the arm that was falling asleep had a normal nerve conduction and EMG.
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Re: progressive symptoms

Postby Christina91013 on May 4th, 2014, 9:01 pm

Nrwtwitcher,
I have twitching/ cramping/ pain almost everyday. Oddly enough, some days are worse than others with the cramping, but I am always twitching- especially in my feet and calves. I had a dull, aching pain in my arm for several months that has finally subsided but comes back when I use it a lot. The other night, my foot cramped so bad that my big toe moved outward on its own. I think the cramping thing is somewhat common with BFS.

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Re: progressive symptoms

Postby nrwtwitcher on May 5th, 2014, 1:36 am

Dear Christina, thank you. It is a good feeling to be not alone with the cramps and feet twitches. My problem ist really: After 7 months in it, my symptoms get worse. I have read in a lot of posts, that the twitches have improved after a few months. This night for example, nearly every little muscle of my feet twitches, from my ankle too. And caused of that, my feet cramped. I have slept hours.
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Re: progressive symptoms

Postby Xina535 on May 10th, 2014, 3:37 pm

Hi - burning is a sensory issue and is not related to A**. I've had it too. Cramping is part of BFS, actually, there is something like this:

http://en.wikipedia.org/wiki/Cramp_fasc ... n_syndrome

where BFS is combined with cramping.

I know that when I don't get enough rest or sleep, with constant stress and worry, that my symptoms get worse. Please try to sleep, even if it means taking medicine to get good sleep.

Otherwise, I think all of the symptoms you wrote about indicate BFS, nerve compression, something sensory but not A**, especially if you have these symptoms and your clinical and tests were clean. I hope you can reduce your worrying *hugs*
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Re: progressive symptoms

Postby raindog on May 14th, 2014, 4:32 pm

nrwtwitcher wrote:Dear Raindog, leroyb and Emmie: Thank you so much for your words. It is for me an important fact to be not alone with this strange symptoms. Unfortunately got my symptoms more worse over the last few days. My feet and calves are twitching non stop.Raindog, I have read that you have a long time experience with strong twitches and cramps. My twitches looks like the twitches on your videos...
Before all this startes, I had burning calf and feet muscles. This was in September, last year. Than the twitching startes an gets worse over the last 7 months. Last year I had often burning and stiff feet, the first few minutes in the morning, when I stand on my feet. Emmie and leroyb, it`s good to know, that you have had also "asleep limps". What would I done without this important forum? Thank you, I hope I have also - like you - nothing sinister, and I hope that I can ignore this symptoms one day. At the moment it is incredible, because the twitches are so strong and my feet are going to cramp every day, also when I am moving... After a short time on my feet, they are aching...


I can honestly relate to every single thing you have mentioned. Time is a great healer and once you realise that this is not going to be something sinister you will learn to put it in its place and start living your life the best way you can. A good strategy is to take up a gentle sport or hobby that keeps you and your mind active and to be around people that make you laugh and be happy.
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Re: progressive symptoms

Postby nrwtwitcher on May 16th, 2014, 4:38 am

Thank you Raindog, I try it, but it is very hard by time. It is very important for new members like me, to listen to the experience from bfs-veterans like you. I hope that there will be a day, where I am absolutely relaxed during my twitches and cramps. If you could make a video from twitches at your arches of your feet, I would be very interested :wink:
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Re: progressive symptoms

Postby nrwtwitcher on June 25th, 2014, 1:37 am

Hi... I am not sure how to handle it more longer. My feet are twitching and cramping so much, nonstop, I am not able to sleep since days, because of the strong twitches and cramps. I have asked before, but I am thinking now, that this can not be bfs... I have visited a lot of neuros, but they have told me that I have bfcs. But it gets worse and worse over the months, now 9 months... I am not sure what will be. Every muscle of my feet is twitching and cramping... my calves are twitching and cramping also, not so much as my feet. Of course, I am twitching everywhere but not so extreme as my feet.
I think nobody else?? I will see what will be. Sorry for my english, I was never so scared and never so horror twitches. I should leave this board, because now I am sure, that this is no longer beningn. Sorry for this post, but I feel more than lost.
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Re: progressive symptoms

Postby Bibi on June 25th, 2014, 12:29 pm

[quote="nrwtwitcher"]Hi... I am not sure how to handle it more longer. My feet are twitching and cramping so much, nonstop, I am not able to sleep since days, because of the strong twitches and cramps. I have asked before, but I am thinking now, that this can not be bfs... I have visited a lot of neuros, but they have told me that I have bfcs. But it gets worse and worse over the months, now 9 months... I am not sure what will be. Every muscle of my feet is twitching and cramping... my calves are twitching and cramping also, not so much as my feet. Of course, I am twitching everywhere but not so extreme as my feet.
I think nobody else?? I will see what will be. Sorry for my english, I was never so scared and never so horror twitches. I should leave this board, because now I am sure, that this is no longer beningn. Sorry for this post, but I feel more than lost.

Hi , nrwtwitcher as You know i am in i in the same situation as You ,with fascics in my foot and Calves 24/7 and every Day it also comes in my fingers and face , over my knees and in my thighs , but The foot and Calves are none stop. In The beginning of this i was also cramping A lot and i only slept few hours pr Night and i wake up and was very sad and anxios.My GP gave me some antidepressive , MIRTAZAPIN ( remeron) to help me sleep , it is known that it is good for sleeping. The first Night i took it, i was sleeping many hours and When i wake up i felt so much better . I still Twitch but have not so much cramping and i really Think that is thanks to The medicine that helps me sleeping. I Think that sleep deprivation Can make You almost crazy , thats what i felt. I am still twitcing and my Right leg feels stiff When i start to Walk , so i went to my GP today because i was also sure that i was A very bad sign. She examined my reflexes , they was fine,and made some more bloodworks. I dont understand this stiff feeling in my Right leg , i have it every time i start to Walk and When i Walk, but if i go for A longer Walk it disappears after A coupe of km s walking. I am still afraid of this symptome , as i Read that muscles become stiff with A..
But nrwtwitcher , i hope You Will try to get something that Can give You some more sleep
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Re: progressive symptoms

Postby nrwtwitcher on June 25th, 2014, 12:55 pm

Dear Bibi, thank you for answering. I have tried Mirtazepam a few months ago. And I have also tried Lyrica and Gabapentin. They all made me tiered but they had no effects on my twitches and cramps. The only medication that has worked a little bit was Gabapentin. I am trying to take a higher dose, but the last days I felt no effect. Only the effect that I felt dizzy over the day. But my twitches and cramps are going on. I will think about a new neuro visit... but I am no longer sure that he can help me, because I have these extreme twitches.... it ist so extreme, I am looking like an alien, thousands of twitches in one minute.
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