Diagnostic Delay

[Karen30]

Greetings.
I would like input on how to handle the ALS diagnostic delay. ( 62 yr female ) . I have two separate neurologist clinical exams showing MND. PLS and HSP have been ruled out and there is no suggestion to rule out anything else. EMG is negative.
I have both legs onset since March and it is progressively very difficult to walk and burning sensations. I recently detected very slight finger issues and weakness including trigger finger on one hand.
It seems clear it will be ALS as there is nothing else it could be but the neurologists tell me I don’t have ALS. I had a glute nerve injury very close to initial leg weakness and the neurologists are still dismissive.
If I must be patient I would certainly appreciate suggestions to preserve my walking ability as long as possible.
Thanks for your input.

 

[Clearwater AL]

Karen, Neurologists (two?) told you - you don’t have ALS. They are Highly Trained and Highly Educated
doctors... trust in that. Continue working with the doctors. They can also make suggestions to preserve
your walking ability as long as possible until a determination is made for a diagnosis.

Hope it isn't a lengthy process.

 

[Nikki J]

I am confused. You say clinical exams show mnd but you have been told you don’t have pls hsp or als and have a normal emg

You could see a pt for suggestions for walking A physiatrist might also be helpful. It is important to stay safe while you search for a diagnosis as injuries will complicate the diagnosis process and also may make the underlying problem worse.

If your doctors are not pursuing answers maybe you need another opinion. Complicated cases should be evaluated by a university level clinician