question

[wright]

As I said before, that just doesn't sound like ALS. If you were completely "normal" and within a month had global atrophy and weakness, that is not typical of ALS at all. ALS is an insidious disease . . . not a disease that comes out of the blue like what you are describing.

Unless you were completely unaware of your body before any of this happening, I wouldn't be worrying too much about ALS. It sounds like some kind of odd virus or some autoimmune problem. Those two things can affect someone globally and quickly, like what you are describing.

Remain calm until your neuro appointment. I'm sure he/she will be able to help you.

If you have more questions, you know where to find us.

 

[lbeyerl]

Thank you Wright. I picked up all of my medical records from my dr this afternoon to bring to my neuro appt next thursday.

I found something from my last visit she marked on my records but did not tell me.

Can you tell me what this means?

There are subheadings for each type of exam/run down she went through. Under Musculoskeletal there is a heading that says

"Strength/Tone" she checked the box for "abnormal" and indicated "She does have weakness in the right upper extremity that is greater than the left"

She had me do things like push against her hands with mine, another test i had to keep my hands together while she pulled them apart, made me touch her finger then touch my nose, and made me stand with my palms up for a while.

Does everyone have more strength in one arm than the other? I am left handed, didnt know if that had anything to do with it.

 

[wright]

Most people are stronger in their dominant arm, which would be your left. When physicians measure strength, they do it on a scale from 0 to 5, 5 being the strongest and 0 being no strength at all. Did she grade your right arm strength?

You have acknowledged that you have weakness and atrophy, so it shouldn't be too surprising that your physician found some.

I can't even begin to list all of the things that cause weakness and atrophy, because there are simply too many. Please don't panic yourself over that. This is the third time I've said this: your symptoms are not typical of ALS.

One other thing I have to mention (that you have already addressed) is your age. There are certainly cases of ALS at your age, but it is INCREDIBLY rare. Only 5% of ALS diagnoses are prior to the age of 30 . . . and the younger you are than 30 . . . the smaller the chance gets.

Hang in there.

 

[lbeyerl]

Thank you! I will update after the neuro appt and try not to stress too much..easier said than done.

 

[lbeyerl]

oops i forgot.

No grade there were only to columns one for normal one for abnormal. she marked abnormal.

 

[lbeyerl]

Update to anyone who is interested:

Had an appointment with a neurologist today. He gave me a full examination and said that I didn't seem to have "substantial" weakness, and that the places i have lost weight are were fat deposits are usually located so it could be that i have just lost fat. (cross your fingers world!)

Of course, nothing was twitching when i was in his office. How frustrating. But as SOON as the side of my foot started to twitch and is still going. Of course.

Can doctors usually notice atrophy right away? He said i didnt SEEM to have muscle wasting. Huh?

He ordered more blood work: CPK, b12, another thyroid panel (even though it has already come up normal with my regular doctor). He also scheduled me for an EMG this tuesday.

I'm wondering why he scheduled the EMG if he didn't think there was a problem. He gave me some anxiety pills because I have not been sleeping and have been waking up in the middle of the night with muscle cramps.

Will update after the EMG!

To all of you wonderful PALS (and to those with similar ailments): This process has given me a true appreciation for life and I am so honored to have been able to read your words for comfort and advice. Your strength, courage, and attitudes are examples to us all. God will truly reward you all in Heavan a thousand times over. One truly cannot imagine the struggles you overcome on a daily basis. What strong people you must be! God bless you all.

 

[awieleba]

Good luck on tuesday with emg. Let us know.

 

[lbeyerl]

Had an EMG/NCV yesterday doctor said everything was normal.

He did not give me any paperwork with the results of the EMG and really didn't record anything. As he was doing the test he just kept saying everything was normal. He checked my left leg and arm. Should he have given me a print out or something?

All of my blood work was normal.

He said to come back in a month if I was still feeling bad.

I am very relieved! Trying not to second guess my doctor!

 

[Al]

And you shouldn't. If you feel worse in a month or so then go back. Until then, rejoice.

AL.

 

[lbeyerl]

Another update..

In the last two weeks I have visited my doctor again.

She noticed a lot of twitching in my calf and thighs, and this time told me that there has been progressive weakness in my arms to the point where I struglle to push her arms away.

She was worried about the EMG I got and that it only took about 5 minutes and there was no report sent to her other than circling normal next to emg. She wanted to see numbers, and my neurologist could not provide any. She wants me to see a neuromuscular specialist and think about getting the EMG repeated just to make sure. She said she thinks it is something in the muscles, almost positive not als, but something that needs to be looked at again wit ha little more attention. She is going to call me this week with the names of doctors.


Can anyone recommend a neuromuscular specialist in charlotte nc?

 

[Al]

If you go to www.alsa.org and the In Your Community section and put in your zip or state it has all the best neuro centers there.

AL.

 

[laurel]

Good GP that you have Ibeyerl to pick up on the slack assed EMG. My husband had two poorly done EMG's and nerve conductions done over a 2 year period by an indifferent neurologist who diagnosed Carpal Tunnel. Hubby had surgery and continue to lose function and experience muscle wasting. Finally was referred to a neuromuscular disease unit. The testing done was like night and day. Only then could he compare what indifferent treatment he had gotten--never having had that kind of testing before. We certainly are at the mercy of doctors whom we trust when often we should be questioning. Anyway, he was diagnosed with CIDP and has monthly IVIG treatments with good effect. However, he has a permanently wasted and weakened hand due to the damage that ensued before he was properly diagnosed. Good luck.
Laurel

 

[CB1977]

It is sad to me that some Neuro's dont seem to take pride in their work. My Neuro did a quick EMG. I asked him if what I had could be ALS and he said no. When I asked why he said because I was to young to get that. I have seen a lot of people on this site in their 30's that have got a confirmed diagnosed. Needless to say I'm getting a second opinion. I wish they were all like "House"

CB in Ohio

 

[lbeyerl]

I know. I am not expecting an ALS diagnosis, but it would be nice to know exactly what is going on. And this forum seems to have a lot of people with EMG experience on it, so I am glad I have this place to ask questions.

The Neuro stuck needles in my left leg and left arm and just listened to the machine. Isn't there supposed to be something that appears on the screen and some type of report given?

 

[BethU]

Actually ... and I am no expert on this ... but I believe that listening is the critical part. My second EMG, the neuro had a "fellow" (doctor) he was instructing, and he had her listen very intently as he explained exactly what each type of sound meant.

I'm sure the test was being recorded on a computer, but my impression was that they were getting the critical information from the sound.

(They did send me a printed report later.)

Good luck,
BethU