Questions

[Mlock]

I am a 72 year old woman. In Feb. 2015, I was admitted to the hospital for a huge blood clot in my left leg. After the doctor cleaned out my veins, I noticed numbness in BOTH feet. When this did not improve and I ended up with a drop foot in my left foot, a neurosurgeon took one look at my MRI and hearsd my complaints about back pain and told me I needed a lumbar fusion which I had May 15. Although I no longer have back pain, , I still have weakness in both legs. I now use a mobility scooter outside my home and can barely get myself up 4 steps to my house. Really use my arms to pull myself up. I can manage with a cane or walker in the house. The neurologist said my EMG showed problems in both legs and my left arm. Her exact words: " This can be anything from neuropathy to ALS." So now the neurologist wants to refer me to Vanderbilt Medical Center or University of Alabama at Birminham for evaluation. Of course, I am scared. My question: what might they do at such an evaluation. What should I expect? Or does my neurologist just not want to give me bad news? Thank you

 

[Nikki J]

It is good that you are going to Vanderbilt. Make sure you are booked to see the neuromuscular specialists ( ALS doctors)
Such a sweeping statement does not fill me with confidence in your neurologist as a diagnostician so try not to worry too much until/ if someone with neuromuscular expertise tells you to worry

You should get copies of everything to take with you and also have the records sent ahead. Get copies of your mri discs not just reports. At your appointment I would expect them to review your records, examine you and very likely want to repeat the EMG as well as order blood work
The events you describe make it seem like the answer is elsewhere. I hope it is but time will tell

 

[Atsugi]

Mlock, I agree with Nikki's advice about the records. She knows a lot about these matters.

Based on the description you posted, I agree with your neurologist that "this could be anything from..." Your symptoms are not confined to ALS, and ALS is rare.

Our local neurologist was the one who made the diagnosis. If your neuro didn't make a diagnosis, that's a good thing. Still more to look at. Don't worry about rare stuff while waiting for Vanderbilt.

Good luck at Vanderbilt. --Mike

 

[Mlock]

Thank you, Nikki and Mike. I will keep you posted!