Testing after diagnosis?

[dldred]

My mother was diagnosed on 3/30/09 with MND. The only test she had done previous to this was a MRI. The neurologist saw her just once and diagnosed her from her symptoms and the MRI. Am I wrong or should she have had other tests before being told she had MND? Yesterday she had the EMG done and that doctor told her everything else had to be ruled out before they could diagnose it as MND. He also wants her to get a MRI of her neck. Now we are wondering if this is MND or some other form of nerve disease. I thought her neuro was rushing things by diagnosing this without any other testing, but Ifigured she knew better than I did about this. Any input from anyone would be helpful. And once again, thank you for your help.

Dana

 

[Danijela]

Dana,

the usual practice is to exclude/rule out everything else before settling for MND diagnosis. I have not heard of anyone being diagnosed on the basis of just an MRI and physical symptoms. EMG/NCV tests are a standard practice, and if they are not providing a clear picture they may have to be repeated before a diagnosis of MND is given. In addition, blood testing is used to rule out some conditions which may mimic the symptoms of MND. Good luck. Danijela

 

[rocmg]

Hi Dana... My mum had one EMG and it was inconclusive. She got her diagnosis of MND on the basis of her clinical presentation and clear MRI (no grey matter lesions.) Bulbar-onset is rarely misdiagnosed, although it is my understanding limb-onset is much more difficult to diagnose purely from clinical picture, so bloods etc may be done.

 

[BethU]

Dana ... I agree that this is sure rushing things. There are many conditions that mimic ALS, and you're right ... there is much to be ruled out before a diagnosed of ALS. There are a whole set of tests/"signs" and symptoms that have to be met before such a diagnosed is made.

Stay hopeful that it is something else. I think that's a very realistic hope.

Hang in there.

 

[crystalkk]

Dana,

Was her diagnosed from a general nuero? I can't believe the nuero gave her a diagnosed of MND without even doing an EMG or further testing.
Is this new nuero an ALS specialist? Do you know the results of the emg? Please have all the testing done before you accept a diagnosed of
MND. I believe you said she was first told a stroke by the results of a MRI.

 

[dldred]

The DX was from a general neuro. She had a MRI that showed a stroke, but she never got any better from speech therapy, her speech got worse over time about 1 year. Her foot drop got some worse but not anything major. Her reg. Dr. sent her to this neuro. The neuro spent maybe an hour or so with her and gave her this diagnosis. Now she is doing all of the tests that should have been done first. The EMG could not be completed in one day. She has to go back on monday to finish. The doctor who did the EMG is the one who wants her to have a neck scan done. I don't know if there is an ALS specialist in our area. I guess we will wait for all of the tests to be completed and then hopefully find a Dr. who can help with a diagnosis. I really appreciate everyones advice, it helps us to make a decision about our next move.

Thanks
Dana

 

[Zaphoon]

Did your mom have any of the EMG done? You mentioned it couldn't be completed in one day which leads me to think that maybe the neuro tested enough muscles to convince him your mom has ALS.

I do think it is awfully premature to give a diagnosed of ALS without doing the rule-outs first. I'm just wondering what it was this doc saw that convinced him so early in the diagnosed process.

Zaphoon

 

[dldred]

This what I know about her neuro appt. and what was determined. My mother has weakness (drop foot ) one her left some weakness on her right. Speech slurring and very minor swallowing issues. Some cramping in her leg muscles. Minor muscle twitching in her back. Her tongue also twitches. I asked my mom if her neuro checked for Babisnki
sign. I had to explain what I was talking about and she was not checked for that. The only test that was done before this appointment was 2 MRI's. She had one done about a year ago and that showed a stroke, she had another about two months ago, still showing something there like a stroke, but not any worse. The neuro checked her muscle strength and asked questions, that is about all.

Thanks
Dana

 

[Zaphoon]

Thanks for answering my question! I would say you surely need another opinion. In the case of an ALS diagnosis, I'd also go for a 3rd opinion. As someone has already stated, there are many, many neurological disorders, diseases and syndromes that can cause the problems your mom has been facing.

Let the docs do the blood work-ups, the nerve conduction studies, spinal taps, biopsies, etc. and then see what the diagnosis is.

Zaphoon

 

[dldred]

Thanks for your help, it is nice to know so many people care. I will definitely search out another Dr. for her to see.
Thanks a ton
Dana