Huh?

[GO2020]

So I went to the MND clinic for an OT and PT appointment on Feb 25. My first one. The thing with being in between diagnosis (and maybe not assertive enough in my own care), I haven't had those types of appointments before. Needless to say, a little overwhelming. However, when I got the notification of my visit summary was posted in my chart this is what it said: motor neuron disease unspecified. I feel very confused as at my last neurologist appointment he stated PLS but would do another EMG in December to ensure no lower motor neuron signs.

So I guess....not a diagnosis? I hate this.

 

[ShiftKicker]

Your current official diagnosis is "motor neuron disease" which is absolutely a valid diagnosis, but they're not committing to PLS presently. The usual time frame is about 4 years of showing no lower motor signs before you get that title. It definitely adds to your stress due to lack of certainty, that's for sure.

 

[GO2020]

Yeah, I'm a little panicky.

Thanks for answering!!

 

[lgelb]

If you need a PLS dx for some kind of benefits, it's not wrong to ask that it be coded that way. It's the provisional diagnosis, it appears, and frequently diagnoses are changed as new information becomes available -- exactly the reason you're getting another EMG in December and will be monitored till then.

 

[GO2020]

No, (and I know this sounds dumb). I guess I just feel ridiculous joining here and we told some people outside of the very inner circle and I guess I believed it myself. It makes sense after sleeping on it. I don't need it for any type of benefits. Thanks again

 

[ShiftKicker]

The important thing is that you are under the care of the right type of neuro who can follow you and who is knowledgeable about MND- and you are attached to the kind of clinic that has all the supports and resources needed if they are needed. It can be a bit of a whirlwind at the beginning meeting the folk who can offer you assistance when and if you need it. Anticipatory planning can be hard if there are any questions about what exact thing you have. I found it frightening at the beginning, but now find it comforting to know what is available.

I am hoping they signed you up for the ALS Association? And have you spoken to a social worker? Usually there's one attached to Canadian ALS clinics. That was an inordinately helpful meeting for me as she had lots of info about things I'd never even considered- including parking passes and stuff like tax info (timely for we Canadians, tax time is coming up!) and even camping discounts.

 

[GO2020]

I was offered a meeting with the social worker but passed on it at the appointment. I guess I wasn't aware of what they could offer. My next PT appointment is middle of March and I have all the numbers to call. I'll ask more questions and get more proactive.

Thank you!