Diagnoses confirmed ALS/MND

Status
Not open for further replies.

jpsteeler99

Active member
Joined
Jun 7, 2012
Messages
63
Reason
PALS
Diagnosis
06/2012
Country
US
State
NJ
So, I went to see Dr. Hiroshi Mitsumoto at the New York Neurological Center at Columbia University. He agrees with my neurologist and said it is "likely" that I have ALS/MND. This was really upsetting news. He did say that it looked to be very slow progressing so hopefully he is right. He also suggested that I stop taking my Statin medicine Liptor. He did order some more blood tests to eliminate some other conditions. I had MRIs of my brain, cervical spine and lower lumbar and all came back normal. I think I have had all the normal blood tests and all came back normal. I have not received results for the latest tests that Dr. Mitsumoto ordered. My Neurologist said that my EMG showed "classic" signs of ALS/MND. I have a few questions for you guys....

Do you think I am officially diagnosed at this point? Or am I looking at more EMGs and MRIs to confirm this?

When am I eligible for disability? Do I have to wait until I am actually unable to walk or move my arms?

Is there any truth to the rumors floating around about Lipitor causing symptoms similar to ALS without actually having it? I guess this is my last hope of ever getting better.

I guess I will be a regular around here from now on....
 

CathyP

Active member
Joined
Feb 29, 2012
Messages
91
Reason
PALS
Diagnosis
12/2011
Country
US
State
Kentucky
Do/did you work? If you do/did you are eligible for SSDI & Medicare starting the day after the last day you stopped working. With an ALS diagnoses there is a 5 month waiting period for Medicare to start & for you to receive your first SSDI check. Example....if your last day worked was Feb 20, 2012 then your Medicare would start August 1, 2012 and you would receive your August SSDI check deposited into your bank account in Sept 2012. You will need to call SS & tell them you are not working anymore (assuming you are not working) and ask what papers you need to print off internet. Make an appointment to take them back into your local SS office. Papers are easy to fill out. SS will contact the doctors you list and get ALS diagnoses from them. When you have ALS SSDI paperwork is processed faster.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
Hi, welcome to the forum family... sounds to me that you have a diagnosed, and you should start thinking ahead...

I think that the statin made my legs worse, definitely get off that... and check into taking Ubiquinol Co-Q-10... check into this for yourself first, everyone is different, but personally I think that statins are wrong.
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
Good explantion on the SSDI Cathy. I took my husband off statins because of research that has shown that a high cholestrol is good for PALS. Something about fat around the cells protecting them. He was not on Statins prior to his D X however.
 

Polar

Distinguished member
Joined
Aug 1, 2010
Messages
113
Diagnosis
11/2007
Country
CA
State
Ontario
My Final diag. (2007) was made after a muscle biopsy. This apparently ruled out all other causes to that point. (spent over a year going though all sorts of testing before the biopsy)

BTW I was on lipitor for about 5 years before diag. I was pulled off it immediately and told that a somewhat high cholesterol level would help slow progression and that the drug was known to cause muscle problems in some people.. (I also had a heart attack in 2005)
 
Last edited:
Status
Not open for further replies.
Top