Real concerns about ALS

[rhondab]

I have been reading this forum for a short while and hope that someone may be able to help. In June/July, I noticed 2 indentions, 1 in my arm, another in my leg both on right side. Then I began having twitching and cramps. I have twitches all over and feel my muscles tighten up sometimes. I also notice that I have weakness in my right arm, and now in both hands. I notice this when I'm holding my phone up to my ear, when cooking, and even holding my iPad in my hand. I saw a neurologist who performed an emg in August. He said there was "scattered evidence of chronic denervation, but no active denervation was seen". He did acknowledge the muscle wasting, but did not tell me what it could be caused from. What concerns me most is that my weakness seems to be progressing and I think I have noticed more wasting. I'm a34 year old mother and very worried. Thank you for your help.

 

[clichti]

Hi Rhonda,

I'm the absolute furthest thing from an expert (consult Wright for that!), but I find it strange that your neurologist gave you no insight as to what might be causing your issues. Were any further tests recommended? From what I understand, chronic denervation may be due to an old injury, without active denervation, but like I said, I'm just learning about these things. I think you should either a) follow up with him/her, or b) get some sort of a second opinion and direction on where to go.

 

[Al]

Colleen, I thought you weren't going to hang around here. Now you're giving advice? Thought Wright told you no ALS so get lost.

AL.

 

[clichti]

I know Al, I know. I'm getting there. I have my EMG next Thursday (unfortunately, the only way I think I can remain sane is to go to it), but if it comes back normal, I'm outta here. That's my promise to you.

Happy Thanksgiving to the Americans.

 

[Al]

OK. Make sure you let me know how you make out. Send me a PM if you like.

AL.

 

[clichti]

Awe, thanks for that Al. I will stay off, but I will come back on to let you know how I do. Fingers crossed.

I hope that my guy is a good one - he's not only a neurologist by trade, he's a neurophysiologist who specializes in sports medicine, and has been working in the EMG centre in the neurology department @ St. Mike's for a few years. Now runs his own Sports Medicine Clinic, which is where I had the test in September, He was very sure to reassure me that he has the utmost of experience in the testing, and in recognizing potential ALS issues in said testing.

So, rest easy with this guy?

 

[Al]

I'd feel better if you were getting an opinion from Sunnybrook or other large Hosp. but the guy might be good at it. Is he just doing EMG and no NCV ?

al.

 

[clichti]

Have had both done, and is doing both.

 

[clichti]

Should I try to get in somewhere else? I did actually feel quite confident with him the first time around.

 

[clichti]

I may not have mentioned this first off, he is actually on staff as St.Mike's - splits his time between working in the neuro/EMG department there, and running this clinic. Don't know if that helps. If you do think I should try to get into Sunnybrook, how would I go about doing that? I just, as I'm sure you've noticed from my rantings, don't do well with waiting long periods of time...

 

[trfogey]

I saw a neurologist who performed an emg in August. He said there was "scattered evidence of chronic denervation, but no active denervation was seen". He did acknowledge the muscle wasting, but did not tell me what it could be caused from. What concerns me most is that my weakness seems to be progressing and I think I have noticed more wasting. I'm a34 year old mother and very worried. Thank you for your help.

If your EMG didn't show active denervation, there's no need for you to worry about ALS. Chronic denervation/reinnervation simply means that some of your nerves have been injured in the past and healed, leaving evidence of the past injury -- the electrophysiological equivalent of a scar on your skin. If there is no active denervation going on, then the weakness and wasting that you claim to see aren't being caused by a denervating process like ALS. Under that condition, your twitches and cramps are probably benign.

My best advice for you is to stop searching for medical information on the Internet and leave the diagnostic work to the doctors. There's no need to keep scaring yourself with irrelevant information about a disease that you don't have and aren't likely to get.

 

[Al]

See what shows up and worry after if it's needed. You need a Dr. referral to get into the clinic but you hopefully won't need itt.

AL.

 

[clichti]

Will do Al, would absolutely try to go to Sunnybrook. That's where my friend's mother was treated.

But, cross that bridge if and when. Hopefully, the test will come out all "zeros" and "normals" across the board - don't think it would take Einstein to interpret that