Status
Not open for further replies.

violetivy

Active member
Joined
Jan 29, 2009
Messages
48
Country
US
State
NY
City
Center Moriches
Hi,

I am so very frustrated and upset. I am waiting my EMG next week, and despite the fact that the neuro said he was 99.9% sure that I do not have ALS after his neuro exam, this is setting me back. He asked me question and just by the way I answered determined that my twitching wasn't malignant. Anyway, I went for a walk yesterday. I felt okay. I was so happy. Anyway, after the walk I came home. I got twitching, but didn't care cause I was able to complete an entire walk. My hopes were high. Anyway, that even my muscles in the legs felt like they were on fire. They were burning so bad. I did not sleep at all last night because of the burning. I took Xanax, advil, so that I could at least sleep, but nothing helped or even took the edge off.

Can someone please tell if it this sounds like them? I read a post where someone who was diagnosed with ALS on this board also experienced this type of burning, although I gather it is not common.

Please let me know your thoughts. I am having a really hard time with this and feel alone.

Thank you.
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
you are not alone, although I know it often feels like it. Take comfort that the neuro seems sure you dont have it, that should be your biggest encouragement.
Let us know your good news when the emg is done.
 

violetivy

Active member
Joined
Jan 29, 2009
Messages
48
Country
US
State
NY
City
Center Moriches
Thanks, it's just so very frustrating because my leg cramps and muscle fatique and burning, let alone the all over twitching, is continuing and its hard to live my life not knowing what is happening to my body. I have been on antibiotics, but they are doing nothing. I know the Dr. is wrong. I know it in my heart.
 
Joined
Feb 10, 2009
Messages
14
Reason
Learn about ALS
Country
US
State
GA
City
Fayetteville
Wouldn't it be great if there was an accurate test for ALS

Could you imagine how many months / years you could give back to people if there was a simple test that could be administered. What a booger (sp) this disease is!

I am in limbo land as well (although on the more dangerous "neuro said this could be als" side) and it literally consumes 80% of my day. When I scroll to the bottom of the page and see who is on the forum I quickly learn that I am not the only one consumed by the fact that this could be ALS.

I repeat...What a booger (sp) this disease is!
 

Valya

Distinguished member
Joined
Sep 28, 2008
Messages
127
Reason
Other
Country
US
State
TX
City
Austin
Violetivy,

Hello. My son has had clinical exams for ALS by 5 or 6 neuros, the lastest being Tuesday of this week. Literally ALL of them have said they were baseing their DX of ALS on the results of his clinical exam. The EMGs were only confirmation of the clinical exam results. He has never experienced burning. He does have twitching thoughout his body, but it's not bothersome.

I'm sorry you are going through this and I hope you get some answers soon. Trust your neuro. If he's 99% sure after a clinical exam that you don't have ALS, take comfort in that.

Valya
 

tag0620

Distinguished member
Joined
Nov 18, 2008
Messages
175
Diagnosis
11/2008
Country
US
State
ut
City
park city
Hi V!

I just responded to your kind message to me!

You know you're not alone! Everyone here knows exactly how you're feeling.

But try to find a bit of calm and peace because the stress could be causing some of what you experienced last night...and then it becomes a vicious cycle.

Take Care!
Tracy
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Hi Violet Ivy,
On the CIDP forum what you describe is commonly felt by members on that forum. And they all have had GBS or have CIDP--which is treatable.
Laurel
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
I agree with the good folks that suggest listening to what the neurologist has told you. He is 99% certain you do not have ALS. What a breath of fresh air that would be to many on this forum! You surely wouldn't want to be hearing the opposite.
 

violetivy

Active member
Joined
Jan 29, 2009
Messages
48
Country
US
State
NY
City
Center Moriches
You are right Zaphoon. Thank you. My body feels out of control and I'm trying to understand what's going on, all while trying to be patient. It was a really bad night and that's when all the fears and doubts creep in.
 
Status
Not open for further replies.
Top