Frustrated with referral

[TippiLeigh]

Ugh, I’ve been waiting for weeks for my referral to the academic hospital for my official final diagnosis/second opinion. I’ve called and left several messages, etc. I finally got a call today and was told, “Somehow your referral went to the MS clinic, but after the physician reviewed your chart, he said you don’t have MS and he referred you to the general neurology department. The general neurologist reviewed your chart and said you really need to be seen by the neuromuscular neurologist at the ALS clinic.” Arrrrrhhhhh! I know! That’s where I was supposed to be referred to in the first place!! So I’m now a couple of months delayed because my chart has been floating all around the hospital. I’m just frustrated and tired and needed to vent.

 

[morleyde]

Tippi,

Were you able to get an appointment?
A PLS diagnosis is a long, frustrating, and stressful undertaking.
Basically they eliminate all other likely candidates, and you are left with a clinical opinion that it is PLS.

 

[KimT]

That sounds terrible. I hated the wait and see game and also hated the time between visits when I had needs. After my diagnosis, I got a local team but I'm still a patient at Mayo, mainly because my ENT is there and I like the speech therapist and her team.

Good grief. Maybe you can get in on a cancellation. I know Mayo has been dealing with cancellations due to CV.

 

[TippiLeigh]

I was finally able to get an appointment with the ALS clinic at the academic hospital! So far, the neuromuscular neurologist said she agreed with my first neurologist, but also said she can’t rule out ALS yet (Which was a little difficult to hear, of course.) She was very sweet though and said, “I just want to prepare you that I am putting down your diagnosis as MND. I’m here for you every step of the way, whether it’s PLS or ALS and we’ll work on getting you into some great trials.” So, despite getting some tough news, she was extremely supportive and helped ease my tension a bit. I have an EMG scheduled the middle of October. She could have gotten me in sooner for that with one of her colleagues but I liked her so much I was willing to wait for her to perform it.

 

[morleyde]

Tippi,

The EMG should help with the diagnosis.
Do you have spasticity, hyperreflexia, clonus, or babinski sign? They usually check for them because they are UMN signs that PLS people tend to have, without the atrophy. I am not a medical professional, just what I have learned.