Follow-up / Dallas area

[mcwtlg]

Many thanx to those have posted their stories and especially the stickies...those have been helpful. Lots of good info there!

Back a few months ago someone kindly said that after my neuro consultation that they hoped (for my sake) that I would not be coming back to this site. I echo that sentiment although I think if I do not have ALS, I will still read the posts to keep me up to speed.

To catch some of you up, I started with some "classic" symptoms many months ago:

Weakness, atrophy and hyperreflexia in my left [non-dominant] hand/arm which the first neuro initially diagnosed as Carpal Tunnel Syndrome. There was never any pain or numbness/tingling. There was periodic cramping in the hand.

I have trouble buttoning buttons, typing shoes, using zippers, picking up small items from flat surfaces, and almost non-existent pinch strength in my left hand.

Then came the twitching (fasciculations), mostly in my left arm, but some in my left pectoral and diaphragm. After neuro number one exhausted his abilities he asked I go see a specialist in Dallas.

The first visit with the specialist was pretty thorough and he stated he noticed weakness in my left ankle and foot, but no noticeable atrophy. He also noticed some balance issues as well as hyperreflexia in my left leg and said I have symptoms of upper as well as lower motor neuron issues.

At the conclusion of the exam (after looking at all the previous test results which include a muscle biopsy, earlier blood tests, urinalysis, the preliminary EMG, and an MRI on my neck) that his opinion was that I likely had either ALS or autoimmune disorder. While I do not remember the exact quote, he said something to the effect of, "well, an autoimmune disorder is what we are hoping for". After that he sent in a physical therapist and a respiratory therapist (my lung capacity is at 90%) to talk to me before I went up to get more blood drawn for another round of tests. Again, everything looks normal (the results are posted online and I compared the ranges, read what the tests were for, etc). Pretty much everything that has been reported does not point to an autoimmune disorder since the antibodies that would indicate an autoimmune disorder are not present (according to what I read on the results. nothing official yet).

Over the past two months the cramping and twitching has gotten worse and the atrophy in my left hand is more pronounced. No speech, drooling, or swallowing issues to date.

So far the only pain I experience is when I cramp up, which is in various parts of the body at least once a day, but still is mainly in my left hemisphere.

Today I drive down to UT Southwestern to have the neuro specialist perform another EMG (which will be the first he has performed on me) and I certainly hope to have a clearer picture when those results are analyzed.

As a side note I have a friend (we were roommates when he was in med school) who is a practicing physician in North Carolina. I have been keeping him up to date with things and he has told me to question if MS and/or MD has been completely ruled out. He is not a specialist but a very smart guy so his professional opinion is important to me.

Once I get the test results back I will post another followup.

 

[Nikki J]

Hi sorry things are going in this direction.
Re MD and MS. The EMG findings for MD are very different than those of ALS so if it is one of those the EMG should rule out the other. MS does not really show on EMG. The tests for that beyond clinical exam are generally brain MRI and probably spinal tap.
I am sorry your anti GM1 AB panel was negative.
Good luck with your appointment

 

[mcwtlg]

Update:

The EMG confirmed it was was not MMN. The neuro (ALS) specialist suggested I start taking Rilutek. The only thing that seemed a bit odd to me was that he said, "it looks like you have ALS", not "you have ALS" or "I believe you have ALS". Maybe this is normal...I do not know.

He said that he was hoping to see the antibodies that would indicate MMN (Since it is treatable) but they were not present. He also said that I could take an IV treatment for MMN, on the very off chance that it is that, but he said he doubted it would do any good but it was ultimately my choice.

As a side not, that EMG was the most "discomfort" have have experienced in a very long while. The first EMG I had performed (by a different neuro) was no where near as painful as yesterday's was...I almost yelled out in pain at one point when the did the calf (they tested left hand, arm, leg, foot, and back). All showed the same results, just in varying degrees. The nerve conduction test was performed and he stated what the result was but I do not remember, but I do know he said the scores were consistent with my symptoms.

So it looks like I am here for a while and I hope to use this time to learn more.

 

[Nikki J]

Sorry to hear this. It sounds like the doctor was trying to say it gently but was not the best communicator. Sorry the EMG was worse discomfort. Sometimes they hit the sensitive nerve area. I have had that happen a couple of times ( both in the calf in fact). I forget, was this an als specialist? Is it a second opinion? If not you might want to seek one out just to be 100 percent sure

 

[mcwtlg]

Nikki J:

Yes this is an ALS specialist in Dallas and he was the second opinion. He had an intern with him and she kept looking at him and I was getting the feeling she was wondering how he was going to say what he had to say. I don't envy doctors having to deliver bad news.

The staff at UT Southwestern have been great, helpful, and very friendly so I can recommend them.

 

[ECpara]

So sorry mcwtig. I'm with Nikki, your doctor sounds like he wasn't using the best choice of words. I guess they're only human, it must be a difficult thing to do. So it sounds like you're coming down our rocky path. Scoot over to some of the other subforums for great support. God bless you!