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chris_uk

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Hi all

Am having a really bad time of things, i am just living a nightmare here. Last 2 weeks my symptoms have got 100% worse, my leg twitching is beyond a joke now all down the calf, arches, instep, easily 300 times a minute. When i am laying down i can feel my whole calf muscle contracting for about 3 seconds and then letting go.

Worse part is the pain when i walk, calf goes tight, and arches cramp up, really sore to touch after i walk anywhere of great length.

got my next neuro appointment on 28th July, its more of just a follow up really but tried to fetch it forward only to be told that i have to get it done through my doctor, so going to see him next week but he is not very sympathetic so i doubt he will do anything.

keep studying my calfs in mirror, worse one is 1/2" smaller but i guess it may have always been like that.

When i walk i get a stabbing feeling in my calf that makes me stop, its the bloody pain ! i cant cope anymore with it. Dont want to take anything for it because then i feel like i will be masking it and living a lie.

Do i have weakness? i really dont know, yes i can run but in agony, i can walk but in pain, i can run up stairs but again in pain. I have been twitching 7 1/2 months now and according to some litterature people have read on BFS if you have ALS and its starts with twitching the average time for onset of weakness is between 5 - 10 months.

I really dont want to upset anyone on here with yes another down beat post but i am alone tonight my wife is out and i am just in a bad place.

Chris
 

joelc

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Chris, I am sorry for what you are going through.

The only recommendation I can make is to see your doctor and insist something is going on and causing you pain.

Right now from what is going on it is not ALS so at least you can put that out of your mind.
 

chris_uk

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i really hope your right mate, i really really do
 

joelc

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You should read the post by Liz (#15) in this thread.

General Discussion About ALS/MND
dilemma: should I prepare my husband for the worst?

Please try not to worry.
 

BethU

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Chris ... hope you get the appointment moved up ... and I'm really sorry you're having such difficulties.

But ... if you have pain, please take something to relieve it ! Perhaps your doctor is less sympathetic or concerned because you don't seem to need medication to handle the pain. You say the pain is agony and your life is a nightmare. If this is so, for heavens sake, get some relief. Are you afraid the pain will go away for some reason?

Ref: "some literature" ... don't know what literature would say twitching can turn into ALS in 5 to 10 months. That's wacky. I think we've all stated a gazillion times on this forum that that is not how ALS works. I'm sorry that kind of mis-information is being put out on the BFS forum. People on that forum are scared enough already.

Good luck.
 

awieleba

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Chris

I understand how you feel. If you go to your doctor and he see's your calf twitching ( I saw the post, and it was twitching alot! I have not had that) with his own eyes, maybe he can move up your appt and I would make sure that they do an EMG in that calf! Let them know that it is hindering you.

All I know is that I have been twitching for about over a year. It was sooooo bad in the first 6 months, every 15 minutes all over and more in my legs. It has calmed down sooo much. It use to keep me up at night and then the limb jerking! THat does not happen as much either. It may be really bad now, but that is not to say that it wont stop or slow a bit. Mine comes in waves. Its been really quiet for 2 weeks, so I am waiting for the storm to come back, I pray it doesnt. But it usually does.

Please take care of you!

~april
 

chris_uk

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thanks for your reply, i did have an EMG after 3 months when it was just as bad and he did do that calf but said it was normal. Maybe it was too soon?

Does it look bad to you all the twitching on my calf when you seen it? does it look like something that could be als?

Chris
 

wright

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Hey Chris

I want to first comment on the ridiculous, stupid, mis-informed, wacky (that's a good one Beth), idiotic (I think I've made my point) statement made on the BFS forum: what comic book did they read that from? I'm not sure how involved you are on that forum, but make sure you tell them (from me) that statements like that are completely irresponsible and do nothing but cause unwarranted panic. If they'd like to debate me on it, I would be MORE THAN HAPPY to do so and would challenge them to show me the peer-reviewed journal where they found that "information."

I'm going to assume that because you have been twitching for about 8 months, you feel the weakness is just around the corner, given the moronic statement on the BFS forum. If your twitching was due to ALS, the EMG would have picked it up . . . so NO . . . it was not done too early if you truly have ALS. It's as simple as that.

I wish I could tell you more to alleviate your fears but there simply isn't any more I can tell you, because it truly is that simple. If you have symptoms that are in line with lower motor neuron death (i.e. fasics for example . . . your only symptom thus far), then an EMG will pick it up.

Hang in there, Chris and fixate on why it is not ALS, because there is absolutely no evidence it is.
 

chris_uk

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Thanks Wright

i really dont mean to get on anyones nerves by keep posting on here and i really do appreciate all the advice i do get, it does calm me down. i guess i lean on you good people more than i should but i am so so grateful

I hae to remind myself that i have had this nearly 8 months and surely i would be suffering some major weakness by now with the strength of these twitches if it was ALS.

its just when i have weeks like the past 2, i do loose it a bit.

chris
 

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Perhaps the people on the BFS forum read this snippet:

From Amyotrophic Lateral Sclerosis: A Synthesis of Research and Clinical Practice (1998 ):
Fasciculations occurring in the absence of other symptoms, for example, muscle weakness or wasting, are usually regarded as being of little consequence (Reed and Kurland, 1963; Blexrud et al., 1993). The results of a mail survey of 121, mostly young, adults who were initially seen because of fasciculations but with a normal neurological examination revealed that after a mean follow-up period of about seven years, none had developed a serious neurological disease, in particular ALS. However, the same conclusion should not be made for patients aged 45 years or older who develop fasciculations for the first time. In our experience, and that of others (Cambier and Serratrice, 1995; Swash 1995), fasciculations may predate other clinical abnormalities of ALS by many months. Out of a total of 258 patients with ALS examined by one of the authors (AE) over a five-year period between 1987 and 1992, 36 (14%) had fasciculation, usually associated with muscle cramping, as the initial manifestation of their disease. The mean time interval between developing fasciculations and other clinical manifestations of ALS was 7.6±3.4 months (3 to 11 months) (Eisen et al., 1992).

Or this from The Handbook of Amyotrophic Lateral Sclerosis, (1992):

In some ALS cases, fascicular twitching of the muscles precedes by months, even years, any muscular weakness; in others, frequent, painful muscle cramps herald the creeping paralysis...
 

Zaphoon

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Chris,

I twitch like a son-of-a-(gun) and do not have ALS. My reflexes are wacky and I've got the Babinksi thing going on but I do not have ALS (clean EMG last summer after I'd been twitching for at least 3 months). My fascics haven't gone away and have intensified but I do not have any atrophy in my twitched-to-death muscles.

I hope this brings you some comfort. I would gladly trade the spasticity and cramping for more twitches! Twitches are my friend; they have become an amusement. The constant cramps, on the other hand are a different story.

Zaphoon
 
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Thanks for the info, Lydia. I'm going to read those studies.

Chris, I'm sure that post turned your stomach a little when you read it . . . HOWEVER . . . even if the studies are valid (and I don't know if they are yet) and those people developed clinical symptoms of ALS, their EMG's would have been dirty during . . . and actually before . . . development of fasics. It is once again, that simple and once again, relax.
 

chris_uk

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You know me to well Wright ! my stomach did turn when i read that ! ALOT infact.....if and when you do read them studies i would sure like to hear your opinion on it mate as i am sure alot of us would.

Chris
 

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I probably should have included the oft-repeated comment about the EMG. Of course, their EMGs must not have been clean from the start.

Chris, you are pretty young, right? The first part of the quote was specifically for you (young people twitching).

The second part is what I think people are throwing around on the BFS forums (onset of other symptoms after a certain number of months of twitching). Being 42 when my twitches started, I know I gasped out loud when I read the latter. But then I had the clean EMG, so no more fear of ALS. I take a lot of comfort from that EMG. As should you. My twitches are 24-7. They used to be a mix of large and small, for a while were mostly flutters (but still constant....as in several every minute), and now are only the big thumpers (much more annoying) with a little less frequency (every 5 minutes or so). And still no ALS. Just because the nature of your twitches change does not mean something ominous is about to happen. Try not to let the variability or intensity or frequency of your twitches do a number on you, the clean EMG told you no ALS. I understand some people take meds to quiet their twitches. That is not for me, but maybe you should explore that. If every twitch is screaming ALS to you, then shut them up with a pretty little pill. Can't hurt.

Wright, the author of the second excerpt did not cite a study when making that comment; his last name was Norris (didn't note the first name).
 

chris_uk

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I do understand what your saying about the EMG, mine never really went smoothly though. When the needle was first stuck in my leg it made a "constant raindrop hitting a tin roof " sound, that i had read as being bad, and the tech actually said that it was not normal. He did go onto say that it was not MND however.

Wright i know you said that the sounds was my twitching but it was to rhythmic to be that, as it was a "drip drip drip drip drip" noise that has no pauses to it.

My comfort is that when i asked him at the end about that part of my leg he said that he had expected to see that after my Nerve test was slow in that part too. Also when he stuck the needle in my calf it did not make that noise and he said that was normal.

He said at the end of the exam that he knew i would go away and google what he had done and said (i told him i was bad for doing that) but he then said that he would too as he was baffled to what he thought i might have, his best guess was an irratated nerve that was causing it (would this cause both calfs to twitch though?)

Anyways i asked the tech if he seen any signs of MND and he said no.

I then got a letter from my Neuro saying he had seen the results and it showed no evidence of MND and he wanted to reassure me as firmly as he could that i did not have it.

Of course i have since over analyzed that whole day over and over. What was the raindrop sound? this is what i have found on the net from a nero


It is usually easy for electromyographer to recognize whether fibrillation or not is seen by needle EMG. When he asked you to relax, it means that it was likely to be voluntary motor unit firing and not fibrillation. To come back to your point about fibrillation; each single fibrillation fire regularly (rhythmic) and has initial (down going) positive deflection. However if many fibrillations fire at the same time it would sound like irregular firing because their firing rates are different. I believe the best description for fibrillation sounds like "raindrops on tin roof". Its frequency is usually close to 10 Hz. It has short duration less tha 3 ms.

So this is what scares me, there are numerous references on the net to raindrop sound being a fib, and that is exactly what i had. So i am thinking that it must have been fibs that i heard in my leg. If it was how could they dismiss this ?

Sorry if i am rambling but these thought are with me 24/7 and along with the pain and stifness i get when i walk i am still scared .

Thanks for listening

Chris
 
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