Possible ALS, anyone start similar - Amyotrophic Lateral Sclerosis (ALS) Message Board

vatash · 06-27-2003, 08:47 AM

Yesterday I finally got to see a neurologist and he confirmed my fears that I may have ALS. I'm starting all the test on Monday trying to eliminate that and find another cause for all of my symptoms. I'm wondering if this sounds like ALS to all of you or if it may be something else. I'm scared to death, I just turned 30 and have always been healthy. I'm still a young guy. My doctor was honest that this is a mjor concern for him and he knew that I have been studying every neurological disorder I could find. My symptoms are severe muscle atrophy of the shoulder girdle, mainly left side. Muscle twitching, tremors and shakes. I feel cold easily, but heat does not bother me. Any responses would be appreciated.

reneeintx · 07-02-2003, 09:35 AM

vatash~(I hope you don't mind me reponding)

ALS symptoms(from what I've read) can mimic alot of other diseases. I started twitching in Dec 02 and had an emg in Feb 03. My emg was clear. I don't have ALS. Within the time frame of Dec-Feb I frequented alot of ALS sites reading all I could. I recall reading some posts from people that had symptoms like yours. IT took lots of tests to confirm that either they had it or didn't. Some of these people had a disease but it wasn't ALS. My memory is not good but I do remember that these diseases were chronic and treatable. I wish I could remember the names of these diseases but medical terminology is not my specialty.

Have you had an emg yet?? Are you seeing a neurologist that specializes in ALS. I saw a movement disorder specialist that trained in an ALS clinic at a teaching hospital.

Remember, your age is on your side. I know this is a scary time for you. I had my own personal scare with it myself.

I wish you the best on your tests Monday.

BTW~at one time me and my family almost moved to Rushville Indiana, but Houston gave my hubby a better offer. Rushville was a nice little town though. Big difference between these two.

Renee

[This message has been edited by reneeintx (edited 07-02-2003).]

zuzu8 · 07-05-2003, 12:50 PM

Hi Vatash- How long have you had these symptoms by the way? It's extremely rare for ALS to present with shoulder atrophy. Try not to panic yet. There are a million things that mimic ALS and need to be ruled out:
-----------------------------
Spinal cord lesions
Examples: tumors, lymphoma, syringomyelia, vascular malformations

Spinal bone lesions
Examples: spondylosis, cervical rib, metastatic tumors
Infections
Examples: HIV, syphilis, myelitis, poliomyelitis, Lyme disease

Endocrine disorders
Examples: hyperthyroidism, hyperparathyroidism, diabetic radiculopathy

Toxins
Examples: lead, mercury

Also, postpolio syndrome, Friedreich's ataxia, sarcoidosis, multiple sclerosis, polymyositis, myasthenia gravis, muscular dystrophies

Many more....I'm sure you've researched to kingdom come and some have already been ruled out.

By the way, in terms of the shoulder girdle atrophy, has something as simple as thoracic outlet syndrome been ruled out?
Also don't forget that the shoulder atrophy and the twitching and tremors are not necessarily related...You could have two separate entities going on, neither of which are ALS .

Age really IS on your side. So try not to leap to catastophic conclusions.

Keep us up to date when you can....and don't forget to breathe!

zuzu xxx

harley · 07-17-2003, 01:02 AM

Check out Lyme Disease.
It's the 2nd most growing disease to Aids.
It mimics alot of diseases.
ALS is one of them.

TxGirl1 · 07-18-2003, 09:34 AM

Check out this website regarding Lyme Disease:
[url="http://www.lymnet.org"]www.lymnet.org[/url]

It's a great site with a message board and tons of info. on Lyme Disease.