Diagnosed with ALS, but symptoms for years? please help with info and opinions! - Amyotrophic Lateral Sclerosis (ALS) Message Board

vatash · 07-28-2003, 10:34 AM

I was diagnosed on Friday with ALS from my primary neuro. He says he has been wrong before and he's setting up an appointment at an ALS clinic in Indianapolis. Even though the progression is strange he still thinks ALS

I'm 30 yr's old, white male, 5'8", 140 lbs.
Severe shoulder atrophy left side, some on right. Loss of mobility of shoulder left side (Bicept still strong and forearm, but can't lift arm above head.) EMG showed fascilations on upper and lower extremities.

I first had fascilations about 12 years ago and never thought anything of it, bad nerves for years. Not constant, but noticable when I lay down to sleep, mainly upper shoulder left, occasional legs (2 or 3 a day).

My atrophy of my shoulder has been evident for 3 1/2 to 4 years - thought I just did not get enough exercise. I'm an engineer and sit at a computer for the past 13 years. I am active, just thought I wasn't active enough.

Mri showed spinal cord degenration between I believe C4 and c5 and mri doctor put a DX on ALS on his report as there is no other problems evident.

So just MRI and EMG as test so far, also physical examination.

I have no other physical symjptoms.

I'm starting physical therapy tomorrow to see if I can gain any muscle mass in my back and shoulders.

My question is has any one heard of a case like this? I believe these old symptoms are evident of ALS, but the time frame makes no sense. I know many people would love to have this slow of progression, but It makes me lean more to some other focal muscle or nerve disease than ALS or could it still be ALS? I have researched so much on ALS the last 2 months its crazy, some fits, some doesn't.

Any opinions, insights, views would be more than greatly appreciated.

I'm going nuts!

slaughter17 · 07-28-2003, 11:21 AM

I am so sorry to hear of your new diagnoses. Having an MRI that shows spinal cord degeneration is common among ALS patients. Every ALS person has different symptoms. One patient's symptoms may begin with not being able to swallow properly, where as another may notice they can't seem to hold their balance. Any experienced doctor will not make the diagnoses of ALS before every other disease is ruled out. There are so many other disorders that mimic ALS. It is good that you are going to go to the ALS clinic. The ALS doctor and nurses, along with many other therapists, will keep a close eye on you and the progression of the disease. Time will tell if it definalty is ALS. They will run other tests to ensure that the diagnoses is right. I pray for you and your family in this sensitive time. This disease is one the most expensive. MDA (Muscular Dystrophy Association), is there to back you up 100%...they really can help you with what ever equipment and support you need. MDA bought my dad his first wheelchair. They also lent us many other things that we needed on the way. Most ALS clinics have someone from MDA there all the time. Good luck and keep us all posted of your future. I will keep you in my prayers.

[This message has been edited by slaughter17 (edited 07-28-2003).]

vatash · 07-28-2003, 12:06 PM

Thanks for the reply.

I have researched ALS exhaustively. I understand that symptoms can be different in different people, but canthe sysmptoms be evident for 12 years as the fascilations and atrophy in one location only for 4 years. By every described lifespan study I have read I have already lived 400% longer than the average person diagnosed and I am still totally functional except for minor arm mobility as far as I am concerned. This just does not fit with things I have read. I know stephen Hawking has had it 40 years, but he can only move to fingers. I'm still functioning fine and in 2 months visiting a doctor have had no signs of progression. Also I have not had alot of test. I think the clinic will require many more before they will make a diagnosis as strong as this.

GI_WILD · 07-28-2003, 12:26 PM

LIke I said, Vatash, I too seem to have the same symtoms as you. I have had 5 cervical fusions in the last 5 years, c5,c6,c7, 5 years ago, a redo of c5,c6 last year to try and correct the atrophy in my left shoulder. Then c3. c4 after a car accident.It took 4 years for me to notice the muscles shrinking in my left shoulder. only when I lost my strenght, did the doctors start considering motor neuron disease. When my right shoulder started getting weaker too! They sent me to houston als hospital. They did a muscle biopsy, emg, breathing test, and indepth physical.
They still were not conclusive on ALS, although I have all the symtoms. So now, after my DR. got the report, from Houston, he says I have PLS, figure that! I have not read, anywhere, where atrophy is found in PLS patients. I too am continually searching for more clues, I am beginning to think, it is a mystery to the DR.S too! But IM keeping my faith, as all should do.
The progression phase seems the most reliable in DS od pls or als. Good Luck!

pauline38 · 09-09-2003, 09:04 PM

Vatash,
Did you have any kind of workup way back when, when you were having just the fasciculations? EMG? Don't forget that doctors can and are wrong in many cases. They will know better at the ALS clinic. Good luck!