ALS or is it MS

[ALS like mom?]

Hi - I recently went to the ER because my blood pressure was high and I was dizzy.   They did a CT to check for a stroke.  No stroke, but it showed atrophy of the brain.  I had an MRI that showed the same thing, and my doctor said "suspicious for demyelinating disease like MS" and referred me to a neurologist.  I made the appointment - it's not for another three weeks.  There were no lesions seen on the MRI.  My mom died from ALS, and I'm wondering if my doctor is avoiding saying it could be ALS because she knows I know what that means, or if they really think it is MS instead.  I know I should ask my doctor, and will next time I'm in.  In the meantime, I thought I'd post my question.  I don't want to jump to conclusions, but I'm sure you understand my concern with the family history.

[susan51279]

Sorry, I meant the above post to go to "vanvechlen".

[susan51279]

Sounds to me like you should try another doctor for another opinion.  You need an answer and I don't see how your doc can say you don't have it without many, many tests.  Good luck on your journey!

[vanvechten]

You sound like a very compassionate person who has gone through a lot.  Perhaps you can help me.  I am 53 with a heart pacemaker and a bladder pacemaker due to a neurogenic bladder.  I have NO signal from the brain to the sacral nerve to stimulate my bladder to contract.  That's taken care of now with the device.  My symptoms began 3 years ago.  I've have numerous EMG's, etc. over the years--all negative.  However, even though the meds I'm on help immensely and enable me to still work, I have chronic muscle pain everywhere from time to time; atrophy in my hands and feet, as well as my legs; severe hoarseness that comes and goes; weakness from knees down.  The newest problems are occasional tingling and numbness on left arm to the hand and a tingling on my lower lip.  I am very careful when I eat because I choke easily.
The last neuro got a bit aggravated with me because the EMG did not show problems, and he assured me that I do NOT have ALS or any other n-m disease, but I continue the above as well as losing weight.  What do you think??  God bless you, and take care.  P.S.  My psychiatrist is concerned about me and is the one who has managed my meds so very well.
vanvechten

[TNTTony]

It is unlikely that you have ALS. The reason is that with ALS there is no marker. They run all the tests to rule out other possible nuerological problems such as MS. If nothing else is found then the specialist uses his knowledge and coordination/ muscle tests. So I would say the dr. is being honest with you. I was just today confirmed of having ALS, but really knew it was coming. I have been in a wheel chair for about 4 months, but until recently my upper body was unaffected, then about 3 weeks ago my arms were affected. So now the last piece of the puzzle has fallen in place, unfortunately. Also MRI's though more reliable then ct's are still not 100%, lesions can be missed. Although for your sake I really pray that you have neither of them. Best of luck to you and at least hope this relieves your worry about having ALS. Nuerological diseases really suc.

[missie37]

Hello,
My dad has ALS and I am really concerned about the heredity on the disease. According to the research ALS is only 10% to be passed down the line. I do not know if this helps you or not, but I was a little relieved when I saw that it was only 10% hereditary. Best wishes to you