Just to clear this up

[chris_uk]

Hi all

Just going back to that topic the other day where someone put a link to a survey about how slow nerves / pain etc can be associated with ALS. I know Wright said he has read all the case studies on this and then im afraid he lost me.

Is there evidence to suggest that pain (sensory) can be a symptom of ALS?

Reason i am worried is that when i went for my EMG the first part where they do speeds my right leg (where i have most of twitching and all of pain) was slow. I understand i have been seeing by a good Neuro but i always had the comfort in the back of my head that my pain and slow nerve pointed away from ALS.

I have pain all the time when i walk, its like sore / crampy. the other day i went for a run for the first time in a long while to try and get over this and it was ok but on the night i went in bad cramp....could this be a sign that my muslces are getting weaker?

Sorry for bringing this up again, i read that survey and it has freaked me out and i am not sure what Wright was trying to say after it (he is right i can not interpratate this kinda stuff)

Chris

 

[BethU]

Hey, Chris ... I can add input on one thing. You say you went for a run after not doing so for "a long while" and had a cramp later. That was always my experience back in the day (way before ALS) when I missed exercising for a few weeks. For sure, a cramp that night or a charley horse the next day. I think it's normal.

 

[GGKK]

Hi all

Just going back to that topic the other day where someone put a link to a survey about how slow nerves / pain etc can be associated with ALS. I know Wright said he has read all the case studies on this and then im afraid he lost me.

Is there evidence to suggest that pain (sensory) can be a symptom of ALS?

Reason i am worried is that when i went for my EMG the first part where they do speeds my right leg (where i have most of twitching and all of pain) was slow. I understand i have been seeing by a good Neuro but i always had the comfort in the back of my head that my pain and slow nerve pointed away from ALS.

I have pain all the time when i walk, its like sore / crampy. the other day i went for a run for the first time in a long while to try and get over this and it was ok but on the night i went in bad cramp....could this be a sign that my muslces are getting weaker?

Sorry for bringing this up again, i read that survey and it has freaked me out and i am not sure what Wright was trying to say after it (he is right i can not interpratate this kinda stuff)

Chris

Chris,

It is very similar with my symptoms. I have twitches and vague pains. The twitches are not constants (just sometimes and they last seconds or just a "pop").

I have been twitching for almost 4 years - more noticed in the first year and in the last 2 months, where I can also feel vague pains...mainly in my legs and arms. They come and go, it is worrying me a lot.

I do not have cramps, but certainly it is also common in BFS.

All the best for you,

GGKK

 

[awieleba]

Hi Chris~

I would try not to worry about slow nerve and it pointing toward als. They are looking for abnormalties on the emg. I have the same thing with my left calf and foot going on but I have thinning all around my ankle with twitching. I had an emg/ncv on it last may that was clean, I go for anther this month so we will see. I *think* and not sure, but a slowin of nerve or block could be somethng like cidp? or mild nueropthy?

hang in there and the longer yo do with out any progessing sx then that is a good thing!

april

 

[planningguy]

I don't want to speak too much for Wright, and he may yet chime in. I think the greater message he was trying to convey was that reading medical abstracts, as opposed to the whole article, without medical training is how a lot of misinformation gets spread (Apparently skimming an article with medical training, and then relaying cursory information to a patient is almost, if not more, damning).

Don't throw your peace of mind out the window over what has been shown to be an erroneous assumption.

Take care,

Robert