Status
Not open for further replies.
Kell hon

Seriously, I'd start over. Contact the MDA and ask for them to send you for a yes or no on this. While things can get complicated---ALS just shouldn't be this complicated to diagnose with the level of symptoms you seem to have.

Specific findings must be on an EMG for an ALS diagnosis--and if they've done that twice--demand to know what criteria changed their minds. Lord knows we ALL hope they were wrong---but you need answers and you need to get well if it's possible to do so. Have you asked Wright about your EMG results yet? Or seen them? And were they done by anyone that knows squat about ALS? All things to consider, sweetheart.

Get copies of all your records. You're entitled to them by law. Read every word. Question things that aren't consistent within the records. I know too much about crappy insurance--but the MDA WILL pay for one diagnostic visit, I believe. Contact them.

In the meantime, you need to treat symptoms so you're safe. If the doctors won't treat them properly--by ordering walker, etc--then hit up a thrift store. They are under 10 bucks used.

Send the medical records to a knowledgeable clinic and ask for an opinion?

Edit to add: I wasn't upset with you, either. It was more frustration with the lack of answers you're getting. I guess I was thinking you needed to be more assertive, Kell. I'm sorry if I hurt your feelings.
 
Last edited:
Status
Not open for further replies.
Back
Top