Old 01-23-2007, 09:23 AM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2007
City: Berlin
State: MD
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 1
anitalady is on a distinguished road
anitalady anitalady is offline
New Member (Say Hi)
Join Date: 2007
City: Berlin
State: MD
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 1
anitalady is on a distinguished road
Default Does this sound like ALS? I'm desperate for answers.

I'm a 45 year old female. I started having problems in April. It started with a heavy and weak feeling in my right forearm. Within a few weeks, the feeling spread to my left forearm. Eventually, both upper arms felt that way as well. During this time I also have had intermittent muscle twitches and feelings of vibrations, mostly in my legs. During the summer my teeth and lips started to feel heavy as well.

I tested negative for Lyme twice, but was treated anyway without success.
I have had all the relevant MRIs, all normal, and a spinal tap which was also normal.
I have nested negatively for all blood tests.
Nerve conductions studies were normal.

I have had 2 abnormal EMGs, the latest at Johns Hopkins. Initially the doctor there thought I had Mysthenia Gravis, but I tested negative for that with the single fiber EMG. Still, he has put me on Mestinon while we await yet more blood tests, this time genetic testing. He will perform a muscle biopsy later this month.

I have tested normally for everything except the abnormal EMG tests. The first abnormal test was in July at the University of MD hospital, and it showed chronic, systemic nerve damage but he had no diagnosis.
The Hopkins doc did not elaborate on what kind of muscle or nerve damage he found.

My arms are so tired and weak all the time. If I had this same feeling of weakness in my legs I would surely be in a wheelchair.
I would like to rule out ALS from my own mind, but since I keep testing negatively to everything else it is difficult to do.
Has anyone already diagnosed with ALS had a similar experience?
anitalady is offline  
Old 01-23-2007, 11:24 AM #2 (permalink)
liz's Avatar
Senior Member
 
Join Date: 2006
City: Albany
State: NY
Country: US
Diagnosed: 11/2006
Interest: I have been diagnosed with ALS.
Posts: 643
liz is on a distinguished road
liz liz is offline
Senior Member
liz's Avatar
Join Date: 2006
City: Albany
State: NY
Country: US
Diagnosed: 11/2006
Interest: I have been diagnosed with ALS.
Posts: 643
liz is on a distinguished road
Default

Anita -

Welcome to the forum. I'm very sorry to hear you're having so much trouble. Whether you have ALS or not may be too soon to say. Many people hear have endured lengthy diagnostic procedures over the course of months, sometimes years, before getting a definitive diagnosis. Some end up diagnosed with something other than ALS.

Most of us can relate to the anxiety that you are experiencing now. It is very stressful wondering and waiting for such a diagnosis and all that it means. Please know that you are not alone. The folks here on this forum are a wonderful bunch and will share their knowledge and experience with you.

If you haven't already done so, you may want to browse old threads. There's tons of info and maybe you'll find postings that address some of your current concerns.

Nice to meet you.

Liz
liz is offline  
Closed Thread

Tags
als, als?, biopsy, diagnosed, diagnosis, female, genetic, genetic testing, lyme, mestinon, muscle, muscle biopsy, muscle twitches, no diagnosis, problems, testing, tests, twitches, weakness, wheelchair


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Desperate for answers! siphi Do I Have ALS? Is This ALS? 4 09-05-2015 09:30 AM
Desperate For Answers PLEASE! Jessilynh Do I Have ALS? Is This ALS? 4 01-09-2014 02:32 PM
Hi, new here and desperate to talk! Bear1011 General Discussion About PLS 27 06-11-2013 03:04 PM
PLEASE HELP ME i am desperate manati02 Do I Have ALS? Is This ALS? 6 01-09-2013 03:38 PM
Do I have ALS? Please help me. I am desperate. Kool Buddee Do I Have ALS? Is This ALS? 53 01-02-2012 01:48 PM
Desperate tommazza1958 Do I Have ALS? Is This ALS? 4 12-26-2011 11:08 AM
Desperate SidVicious Do I Have ALS? Is This ALS? 9 07-01-2010 04:19 AM
A bit desperate right now szzq General Discussion About ALS/MND 3 09-04-2008 09:54 AM
Hello to all. Help much appreciated! Desperate. awakinggiant Do I Have ALS? Is This ALS? 2 08-08-2008 12:29 AM
Desperate KathyE123 Do I Have ALS? Is This ALS? 11 07-31-2007 09:47 AM


All times are GMT -5. The time now is 11:34 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016