Status
Not open for further replies.

lorilou

New member
Joined
Sep 6, 2005
Messages
1
Hi, I'm new to the forum, and not officially diagnosed, yet. The neurologist can't tell me I don't have ALS, and says we're on a wait and see basis, now.

I've had 3 MRI's (brain, cervical and thoracic spine), EMG/NVC, and lots of blood tests to rule all the other things out. On the EMG, he said, the nerves appear to be fine, but, my muscles are very spastic.....I have the rumbling twitches all the time.

The cervical spine MRI did show some stenosis and myelopathy, but, not enough, he said to cause my symptoms. So, now, I have to see him every 2 weeks and go through periodic EMG's.

Has anyone else been diagnosed with Cervical Spondylotic Myelopathy and then ALS?

Thanks and hope to hear back from you all soon!

Lori
 

me

Distinguished member
Joined
Apr 26, 2004
Messages
216
Lori - thanks for visiting this site. I don't have an answer for you but I wanted to welcome you here for support if you need it. Melissa
 

Timshelper

Distinguished member
Joined
Nov 11, 2003
Messages
154
Lori welcome aboard and I hope you find out the answers you need. Keep asking until you find out. There are never stupid questions but there are a lot of dumb answers.
Kim
ALS About Loving Someone
 

Meg1

Distinguished member
Joined
Jul 5, 2005
Messages
118
Lori, you don't say much about your symptoms or your doctor's qualifications to diagnose ALS, but his protocol seems strange to me. A visit every two weeks seems excessive, expensive and exhausting (sorry--channeling Jessie Jackson, I guess). My best advice to anyone in your position is to be evaluated by a specialist in ALS at an ALSA-approved ALS center. Most general neurologists just don't see enough ALS to be qualified to diagnose it. The ALSA site lists such centers--let us know if you have trouble finding one.

And I sincerely hope what you have is something else.
 

redhed

Member
Joined
Aug 15, 2005
Messages
10
We are in the same boat. I to have had similar test results and am in "wait and see mode". I have been in that mode for 2 yrs now. ( my tounge has started twitching) I know it is driving you mad. Hang in there. You have found the right place to talk. I am always thankful when my nero says " no als yet" . I know our PAL friends would love to hear that. They are here to support us and I thank God for them everyday. We can pray for them , pray for a cure and pray for ourselves. Ask your nero about CO-Q 10. It has helped my symptoms and made me more functional. It can not hurt you and may help as well as green tea and something for strees to ease your mind so that you can live and laugh without the constant stress of not feeling right. Also, do go to an als clinnic and get a 2nd opinion. An EMG is only as good as the Dr. performing it. I hope you get your answers . I am hoping to get mine in 3 wks. at the U of Penn. AlS clinnic. Please keep in touch.. :D :D :D :D Try not to worry, I you have BFS it will only make your twitching more severe.
 
Status
Not open for further replies.
Top