progressive symptoms

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progressive symptoms

Postby nrwtwitcher on April 15th, 2014, 4:10 am

Sorry for this dispondent message and sorryfor my english. Please do not read it if you are very anxious! I am twitching now since 6 months. I have two EMGs, one in December 2013 and one in March 2014, both were clean, they only showed fasciculations. But my sypmptoms progessed... I have daily and nightly cramps in both feet and more and more often also in my calves. And in addition I have extremely strong fasciculations in my feet (every little muscle, my toes spreed away also) and in my calves. I have spontaneous fasciculations also everywhere on my body.. I am cramping during the night, I am cramping when I try to relax (suddenly when I lay down), I am cramping also after only 10 min. walking in my feet... My fasciculations get every every every day stronger and stronger. I am not able to sleep for 4 weeks now, only 4 -6 hours p. night. Before my twitches started I had a lot of stress and I had burning calves and feet in the beginning - before the twitching starts. I had also cramps in my feet - before the twitching starts. Yesterday I have searched in this forum for strong fasciculations. Then I found a comment about someone who was on this forum and he has als. It starts with cramping- before fascicultatins. My left arms is not strong enough, I feel weakness. My neuro doesn`t confirm this, but I feel that my left arm and my hand is weak. My wrist aches since 4 weeks,... I have posted sometimes about my cramps and my twitches in my feet... but there were only a few answers. Nowbody, nobody on this forum with bsf has this stranged symptoms... and this progression over the time from 6 months. I feel lost...Now I know that I have realy als... I can not stand it any longer... I am so sad. I have tried meds: Magn., Quinine, Lyrica... nothing nothing helps... my symptoms get worse and worse and worse every single day... Sorry for this horrible story... I am 43 tomorrow I get 44....
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Re: progressive symptoms

Postby Yuliasir on April 15th, 2014, 5:23 am

Now I know that I have realy als.


Are you diagnosed with certain, possible or probable ALS by proper doctor/medical institution? Do you have clinical weakness? failure to manipulate the muscle? Foot drop? Changes on EMG?
I just would like to remind that self-diagnosing never helps and may be strongly misleading. Officially diagnosed people get professional care, ensurance coverage, hospice programs are opened for them, they participate in trials and do all the efforts inorder to make cure if not possible for them but at least to next generations. While self-diagnosed people can do nothing and just fade in a shadows (which is especially sorrowful considering that they may be not true in their diagnosis and therefore they at least limit themselves to a very miserable life and extra suffering).

Without this you are just in panick. yes you may have fascic increased, by the way, Lyrica may cause that initially.
Do not want to blame or be offensive at all, especially for the person suffering so much as you, but we have a fellow who was diagnosed with possible ALS recently as you know and his symptomes were consistent with at least MND - clinical changes, EVIDENT TO HIS DOCTOR even before they were evident to him (100% vice versa compared to your cituation), clear neurological deficite, and generally twitches were not his major concern.

I had cramping sessions like yours - they all were correlated with the stress, even with the pleasant one (vacations), I have them right now (4 month of total stress due to complicated political conditions in my country), and I am still alive.

If your neuro does not confirm your weakness, you have only two options - seek second opinion, or turn to right doctor for our case - to psychiatrist or psychologist as you seem to be in the ultimate stage of stress disorder or close to.

we had here also the fellow who was claiming he has als and later this gentlemen confessed he had extreme form of obsessive disorder. This just happens.
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Re: progressive symptoms

Postby ShawnW on April 15th, 2014, 6:47 am

I would disagree. Many people on this forum have those types of symptoms. I have had cramping of hands and feet...diffuse strong twitches...perceived weakness...shoot had problems washing my own hair.
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Re: progressive symptoms

Postby nrwtwitcher on April 15th, 2014, 7:10 am

Hi Shawn: How often do you have cramps? Have you had such strong twitches, which woke you up at night? Thanks a lot for answering.
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Re: progressive symptoms

Postby ShawnW on April 15th, 2014, 8:36 am

nrwtwitcher wrote:Hi Shawn: How often do you have cramps? Have you had such strong twitches, which woke you up at night? Thanks a lot for answering.
I haven't had strong twitches awaken me but know many stories of those who have. I have very mild cramping of hands and feet almost all the time...there is pain especially in the hands...but just very mild. But, when my stress levels pick up the cramps pick up.

The search function will really help you. When a new symptom pops up I usually search it here to see how common it is...and I'm always surprised at how common the complaints I have really are...at least here.
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Re: progressive symptoms

Postby nrwtwitcher on April 15th, 2014, 9:42 am

Thank you Shawn, but I have searched and I didn`t found anybody with such strange progressive symptoms, nobody with bfs..
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Re: progressive symptoms

Postby ShawnW on April 15th, 2014, 5:18 pm

nrwtwitcher wrote:Thank you Shawn, but I have searched and I didn`t found anybody with such strange progressive symptoms, nobody with bfs..
That's hard for me to believe. Many people perceive "progression" which is merely an evolution of BFS. I had buzzing of my right cheek on Sunday...does that mean I am progressing? BFS is notorious for changing...even worsening. Until we get the anxiety under control...we will struggle.
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Re: progressive symptoms

Postby leaflea on April 15th, 2014, 8:38 pm

nrwtwitcher, I have read that feet and calves twitching and cramping are of no real concern. I had cramps in my feet and calves many years before I started twitching. They are now worse and more widespread since developing full blown bfs. Please keep in mind, many als patients ever report twitching, they cannot usually feel it, but it can be seen sometimes needing special lighting to see. My bfs changes, and it is important not to confuse changing with progression: THEY ARE NOT THE SAME THING. My wrist felt weak and the appearance of my feet and hands have changed and become skinny, but I cannot say they really are weak. I showed my neurologist what I believed to be atrophy in my wrist, he shook his head and said "there is no atrophy, there is almost no muscle there." The pain in my wrist has now passed after a few weeks, now it is in my ankle. BFS moves and is related to anxiety. Anxiety is the real beast. Thanksfully, anxiety is treatable unlike the disease we fear.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: progressive symptoms

Postby volfan on April 15th, 2014, 9:58 pm

not to make you feel like you are somehow not special, nrttwitcher, but I could have written your post. been there (still there), my closet is full or I would ask for the t-shirt.
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Re: progressive symptoms

Postby nrwtwitcher on April 17th, 2014, 4:37 am

... I have really a bad feeling... and bad symptoms...
I have also pain between my little and my ringfinger on the left side, I have this pain also when I am writting on my laptop..sounds this like weakness....? I have also pain by writting in my left wrist... thanks al lot
what do you think about it?
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Re: progressive symptoms

Postby ShawnW on April 17th, 2014, 6:47 am

nrwtwitcher wrote:... I have really a bad feeling... and bad symptoms...
I have also pain between my little and my ringfinger on the left side, I have this pain also when I am writting on my laptop..sounds this like weakness....? I have also pain by writting in my left wrist... thanks al lot
what do you think about it?


Pain isn't ***.
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Re: progressive symptoms

Postby Yuliasir on April 17th, 2014, 7:30 am

As for pain in the wrist and fingers - you have either compression syndrom (tunnel syndrom) typical for nowadays, or similar one related to possible inflammation without significant tunneling, anyway, compains for tunnel-like pains are very very frequent here and absolutely not unique.

weakness - clinical one - means that you can not use your muscles. Example; let's imagine you had your hand broken and had to wear cast for 4 weeks. After removal of cast you see usually that a) your hand is pale, jelly-like, puffy, 2-3 inch smaller in diameter (atrophy, physiologival one due to immobilisation) - and! surprise surprise! you can not use it fully. You can not hold a cup of water - JUST CAN NOT, no matter how you wish or try. You can not hold a grip. Fingers are 'absent'. this is clinical weakness caused by temporary non-usage of muscles. And it is absolutely the same as in MND, the only difference is that it is reversible and you can gain bulk (not alwaqys fully) and strength (also depends on how long you did not use your muscles)/ pain? weird feelinfs. tingling, etc. ARE NOT WEAKNESS. Excersise intolerance is not weakness either.
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Re: progressive symptoms

Postby Christina91013 on April 21st, 2014, 8:22 pm

nrwtwitcher,

I have been twitching for over six months now and I have experienced the same symptoms that you have. I have had mild pain/cramping for the last five months or so. Most of it is concentrated to my right side, but I do twitch all over. I've had pain in my arm, in my calves, and in my feet mostly. Like you, I've had two clean EMGs and have to go back at the one year mark if I am still twitching. You are NOT alone with your symptoms. By the way, I am 43 and will be 44 in June-getting old stinks.

Take care,
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Re: progressive symptoms

Postby nrwtwitcher on April 23rd, 2014, 12:43 am

Dear Christina, Shawn, Yulia and all... thanks for reading and answering... Christina, do you have cramps also every day?... my symptoms get worse... every day. I am not able to sleep more than 4 hours the last days... I am cramping and twitching, the twitching is extreme in my feet and calves. And what is new: My feet fall asleep during the twitching sensations...
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Re: progressive symptoms

Postby nrwtwitcher on April 23rd, 2014, 6:40 am

My feet fall asleep several times daily. Is there anybody who has experienced that? Please please let me know. Is this a bad sign??? Is this a sign for...***??? Thanks for answering and reading.
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Re: progressive symptoms

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