Old 09-02-2009, 08:43 AM #1 (permalink)
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Default Questions for longtimers (and chris_uk)

This is my first post. I hope I am using this forum properly... (sorry if my English is average, this is not my mother tongue).

Where to start ?

I am 40 and have two children.

My father was diagnosed with *** in May (he has the random, not the inherited type).

From then, I searched the Web to understand his condition and offer my support (as an aside, I can't talk of any of the issues below with him, he just won't talk about ***). Evidently, I stumbled on the *** symptoms since I had been twitching before in the calves, but never made a big deal out of it (don’t know for how long I have been twitching though, but I would believe it was for months).

Anxiety came along and within days I found myself twitching from everywhere (arms, legs, forehead, shoulders, stomach, etc.) I get the buzzing/vibrating, pins and needles, parasthesia, etc. My calves twitch badly 24/7.

I saw a neuro in June and he performed an EMG (also the test with needles). All good. He said the fasics were BFS.

I was so anxious at the time and relieved by the diagnosis that I did not ask him a great deal of questions.

I went on thinking the fasics would disappear and I could go on with my life. Wrong ! Anxiety was still there. A few weeks later, I started consulting with a psychologist to address the anxiety.

To help me overcome anxiety, I eventually went back to a collegue of the first neuro I saw and she completed a thorough clinical exam. She was very reasssuring and told me I had BFS, not to worry about it and that I would certainly die of something, but not of ***. This was in early July.

From then, I still twitched a lot, but I was feeling more confident about BFS.

However, in the last two weeks, I developed a weird feeling in my right calf (which is the one twitching the most and, quite strangely, the bigger and more toned of the two).

chris_uk posted a thread on this board a while back in which he was describing similar symptoms :

"Over the past 6 months my leg is steadily getting worse for me to walk on, i just dread walking and feel so nervous about walking anywhere. When i walk i am ok for about the first 5 minutes then the weird feeling set in. Its all in my right leg where the twitching is constant, i get a really really sore calf after about 5 minutes of walking. I can still run and walk fast but then my whole leg starts to ache around the calf and knee area.

So anyway when i walk for about 15 minutes my calf is really sore and leg is aching, if i stop for maybe a minute, its then ok for about a few minutes then will go all achey / sore again. Is this weakness?

When i come home from my walk (i try to walk 15 mins a night now) i can still run upstairs but its more painful. I am at my best when i have rested it for a bit but it always comes on."


As Chris had put it, I feel pain and fatigue in the right calf when walking for a few minutes (as if the muscles were pulled). Sometimes the calf will become contracted. Sometimes the feeling is in my kee (or behind my knee), sometimes directly in my calf muscle. When I wake up in the morning and am sitting at my desk, my knee area (and the back of my knee and upper portion of my calf) feels numb. I was a very fit person. I can still run a couple of miles, but will end it in pain. It is for some reason less bothersome when I play hockey.

The thing that worries me the most is that it is also very uncomfortable to drive my car. I can push the gas/break pedal w/o problems, its just that my calf muscles get so tensed that I realized recently I am using the cruise control whenever I can to rest my calf. When I rest it, the pain and discomfort somehow reduces, but doesn't disappear. That being said, if I have to use the full strenght of my leg for a streneous effort, it is still as strong (at least it is my perception) as the other.

I am sure I don’t have atrophy, but can this be considered by any way, shape or form as some sort of onset of “weakness” ?

I know, I know, you will all say clean EMG no *** (sometimes I wonder if I have done the test too soon), but I am interested in your feedback. Wright, you can use the "in your face" approach with me no problem

Saying weakness is complete inabilty to use the limb is not quite satisfactory, as such weakness would necessarily be progressive. Complete inability would be the end result. For a fit person, I would assume it could take some time before "significant" weakness appears...

Chris, I think you went back to your neuro with these pain/discomfort symptoms. What was his comments/diagnosis on that ? Has the pain/discomfort diminished over time ? I am happy to see that you have now made peace with all of this. What was the tigger point for you ?

Thank you for your time and good luck to all of you with this *** condition. I have empathy for each of you.
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Old 09-02-2009, 10:33 AM #2 (permalink)
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You may have slight sciatica. The reason I say that is, you describe numbness around your knee and calf while sitting and then difficulty driving. You said while playing hockey it seems better. Sitting puts pressure on the sciatic nerve, so if there is a problem it will be irritated. Certain activities can make it feel better. But, there are different causes for sciatica. For example, it could be a slipped disc or something involving a swollen muscle. (I'm no doc, but do have sciatica, so your symptoms sound familiar.)

Doesn't sound a bit like ALS, but I understand your anxiety. Good that you are getting help for that.
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Old 09-02-2009, 02:50 PM #3 (permalink)
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thank you for your support brooksea. i doubt it is sciatia though as I don't have back problems right now. I guess I am trying to find a way to cope with this without having to go back to the neuro for some more tests to be reassured. This can last forever.
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Old 09-02-2009, 03:06 PM #4 (permalink)
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I realize I have posted this in the wrong section of this site. sorry about that.
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Old 09-02-2009, 04:03 PM #5 (permalink)
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I know that you know this is the standard answer, but it is also true for me: I have not heard of anybody with ALS describe the pain and discomfort you are experiencing. Although mine is bulbar onset, it is now in my limbs, and ... yes ... I experience weakness, not pain or aches. Also, a pain that affects a muscle in use, and which goes away with rest, would not be the way ALS operates if it did produce pain. That would be indicative of something like myasthenia gravis.

I can only speak for myself, but this really doesn't sound like ALS. (I know people on the BFS forum use *** instead of the initials, just like people used to say "The Big C" instead of cancer, but it's not necessary here .)

Sounds like you are doing good work on the anxiety issue.

Take care!
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Old 09-02-2009, 04:12 PM #6 (permalink)
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Thank you BethU for these comments. You are right, dealing anxiety is my primary concern right now. You guys seem so strong. I really admire that ! God bless you.
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Old 09-03-2009, 05:36 AM #7 (permalink)
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If you are twitching constantly. Then it is likely to make the affected muscle very tired (the muscle due to continous twitching is getting a workout). I get the same problems when im driving, my legs feel very tired sometimes. I don't have ALS/MND, i've just had constant twitching, cramping and spasms all benign for the last 6 years.
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Old 09-03-2009, 09:49 AM #8 (permalink)
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thanks abcde. somehow, it reassures me to see that I am not alone experiencing these feelings. I have to find a way to convince myself that all my symptoms are bening. Were you able to do that rapidly ? I'm in month 5 now and the temptation is great to rush back to the neuro again.
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Old 09-04-2009, 08:21 AM #9 (permalink)
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Default Re: Questions for longtimers (and chris_uk)

I was quite anxious for about 3mths. My neurologist had never seen anyone before who had such visible twitching (bodywide) and tension in muscles due to constant spasms. He even got a group of med students to observe me. So that got me very scared but his words "no weakness, no MND" reassured me. Still don't know what it is, just learned to live with it! Just wish i could do something to stop the spasms (20-30) a day of which most are quite painful.
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Old 09-06-2009, 11:02 AM #10 (permalink)
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Default Re: Questions for longtimers (and chris_uk)

I caught a very bad dose of "I-have-ALS-itis" ten years ago, and it took me well over a year to snap out of it, so don't beat yourself up over 5 months of doubt and fear. I found it extremely hard (impossible, really) to accept what my neurologist and friends and family told me --- that they didn't believe I had the disease.

The one thing I did always tell myself was that "time would tell." Even at my lowest point, I knew that in time either the symptoms would visibly progress or they would not. Three to five months might be enough for some people to realize they don't have ALS, but anxiety and depression can make it hard to be objective about your own symptoms, and can often manifest as phantom symptoms (like tightness in the throat) which can easily be mistaken for progression of ALS.

So even if six months is enough time for an objective observer to determine if someone has ALS or not, it can be very difficult to be that objective when you're the one who's invested so much emotion into the situation. So don't beat yourself up too much for still being so doubtful after five months. Another trip to the neurologist might help, in that it would be an objective eye regarding any progression of symptoms (not that it's easy to accept, even if he says nothing's changed.)

The key thing is that this situation you find yourself in will end. Within the next few months you will know for sure one way or the other and it's far, far more likely that you do not have ALS.
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Old 09-07-2009, 12:05 PM #11 (permalink)
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Default Re: Questions for longtimers (and chris_uk)

Hi

sorry taking so long to reply, just seen it !

I have had this constant twitching in my calfs now for just over a year, and i was terrified, you have obviously searched my previous posts and seen the state i got myself in.

Well since last year nothing has changed for me, i still twitch more than ever, all the time 24/7 in my calfs, and the pain still comes and go's, its there today actually and its bothersome but thats all

However the timing of this mail could not be better, i went to see my neuro in july for a checkup (6 monthly) and tomorrow i go for some more tests, just the nerve condcution test i think as last one was slow in my legs. If that is the same or improved then thats it, no more tests he says and will send me on my way.

The Trigger point for me was i was in a really bad place and that post you refer to me posting was my lowest. Then other things happened in my life and i kinda put my worries to the back of my mind and guess what the pain went away, the twitching never did but the pain did.

This coupled with elapsed time and all the help on this board from Wright etc and my Neuro telling me i dont have ALS made me think i have to start believing all these people.

I came on here today to post about my tests tomorrow to keep people who have helped me in the loop and i can use this thread to do that, i stumbled upon lories story and to be honest a few months ago this would have frozen me to the bone reading it.

But then i look at how she deals with REAL issues and it puts what i went through into, well meaningless and pathetic

What your going through is VERY real and i sympathize with the twitching and pain as i have been there mate and still am there, also i am worried a little about tomorrow, you know incase something does show up as i have a feeling they are gunna slam in one more EMG on me just to make sure.

Hope i have helped

Chris
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Old 09-07-2009, 01:11 PM #12 (permalink)
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Default Re: Questions for longtimers (and chris_uk)

Just a thought, you may want to not carry your wallet in your back pocket! I am a Registered Nurse and I can tell you of countless times that we would see people c/o hip/leg pain etc and it was directly related to the pressure of their wallet on their sciatic nerve! :]
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Old 09-08-2009, 02:28 PM #13 (permalink)
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Default Re: Questions for longtimers (and chris_uk)

thanks chris. hope all is well with your tests.
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