Status
Not open for further replies.

fitzroy

Active member
Joined
Nov 28, 2011
Messages
99
Reason
Learn about ALS
Country
AU
State
VIC
City
Mel
I figure as long as I'm still posting here, I should also continue to share my experience and process. I'm thankfully through most of the concern I felt when AHCD was first mentioned, thanks to this group and my health team. I just want to handle things moving forward as matter-of-factly as possible. (I've updated my site "Interest" at this point).

I accepted a referral to a Neuromuscular Diseases Specialist from the Neurologist after the last set of equivocal test results and specific but mild clinical findings. I figured it would take months until the appointment which I was fine with. In a couple of months I would get better or worse. If things improved, I could cancel the appointment. If worse, there'd be more diagnostic information. Perfect plan for getting away from doctors for a while.

The appointment came in incredibly fast. It was this past Tuesday.

First off, I like her. Very comfortable and open discussion. She had referral notes and test results from previous workups but still went through a full history as well as standard strength and reflex stuff. A few personal points she asked about during the history and exam:

- How am I managing my evolving limitations
- What my caretaker situation might be like if things got worse
- It's usual for patients to want to discuss particular worries such as MNDs, did I want to?

I can honestly say, I didn't care to discuss possible diagnoses and I said as much to her. In a nice way, I hope. (That's her job, not mine). But I did let her know about my current coping strategies and plans in the future if needed. Not fully worked out at this point, and still optimistic they won't have to be. I guess in retrospect, I'm a little surprised MNDs even came up given she had my recent EMG.

Clinical issues are yet once more confirmed. Hands seem a little weaker with wasting. More generalised weakness in the right leg and ankle. I think she also noted some proximal weakness, but I'm not sure. General muscle tone good. Good reflexes everywhere except the right ankle which is weak to non-existant.

One thing I liked about her; She dictated her notes and the referral information while I was with her. No secrets or couched language. I was able to correct a couple of points on current meds but probably slightly miscommunicated on some of the cramping in the history.

In any case, despite my hopes of a couple of months break from investigations, I now have referrals for small-fibre testing and another EMG including a sfEMG. All to be followed by a muscle biopsy. She's also running blood work for MG.

We talked a little about whether to push the process quickly or take it easy. I'm still in no rush to run in and out of offices, so we agreed to not push things. I'm scheduled to see her again in three months unless there something specific to address.
 
Sounds good...keep going on your path to find out what it is going on. Seems like you are staying calm and just taking whatever comes one day at a time.

Good luck!
 
I commend you for being so levelheaded I wish more people could act like you on the forum good luck.

Al
 
Hi Al. Really nice to see you posting regularly again. I went through my existential crisis a month ago. Done with that. Whatever is going on is what it is. I'm essentially on disability at this point, but I'd say only on the cusp. Doctors don't want me back at work. It's just that it progressively, slowly advances.

In any case, I'm using my time to work on my photography and contemplate what I want to do when things take a turn for the better.
 
Good attitude. I hope you get some positive answers in the near future.
 
I,, too wish we had more of you especially in thies section. Good luck on your upcoming tests. Keep us infjormed.l

Toto
 
Status
Not open for further replies.
Back
Top