A short rant then off the merry-go-round

[fitzroy]

My PT and I thought it was an inflamed tendon on the palm of my left hand. Not sore, but protruding noticeably at the base of the thumb. I only mentioned it in passing at the end of one of my regular rheumatology appointments, more as a curiosity than anything. She took a look at it, poked a little, did a few basic strength checks then said it was wasting with weakness.

My hands had been changing for a few months prior, but again, while mentioning it to doctors it was never the headline so to say.

Two NCVs, an EMG, MRIs of both hands, full spinal MRI, brain MRI, a QST, additional blood testing for MG, a few checks of CK, full autoimmune panels yet again. A referral to a regular Neurologist and a Neuromuscular specialist and just today an appointment for a second opinion from another Rheumatologist. All normal enough. Normal NCV, normal enough EMG, no arthritic changes, no entrapments, no radiculopathies.

I haven't been leading this charge. It's all been at the instigation of my primary Rheumy and GP. The atrophy has extended in both hands with corresponding weakness, but as it stands now, it's idiopathic. The left hand is still ahead of the right. My doctors concerns are now more consternation and confounded.

Time to get off the merry-go-round. No more specialist except to medically manage me off my current meds to an absolute minimum.

I have a follow up with the Neuromuscular specialist in late May after a scheduled sfEMG. My instinct is to cancel both the appointment and the test. I'll be putting a call in to her next week to ask if she feels it truly is medically justified.

I sincerely intend this to be the last thread I start on this site. I might comment occasionally in dihals threads just to point out that weird stuff happens and to whip your head into shape. Another new thread? Bad news or something awesome.

Do I think I have ALS? As so many of you would say, clean EMG = no ALS. There have been a few other clinical symptoms, but that's not what this post is about. Do I think there is something happening beyond my Ankylosing Spondylitis? Yep... But that don't matter at this point either.

Time... Time to get back to something normative and time to find someplace to do some volunteering. But now? I'm going on a holiday from doctors.

 

[notme]

My only thought on your decision is this: WHAT if it's fixable? Apparently, not ALS--fantastic! But what is it? Lost muscle can be regained if it's not being eaten away by loss of nerves from ALS.

I lost a lot of muscle after a stroke--but I got it all back within about a year.

Have you seen a hand specialist? An MRI of your hand or CT?

 

[CGAR]

Hang in there Fitz.

 

[Toto's Dorothy]

After my upcoming visit to the Mayo Clinic, I'm done! I'm tired of the poking and prodding and its not like they can make me better. I think I will save my money and quit paying for the doctors vacations.

 

[fitzroy]

notme,

My Rheumy wanted to eliminate any possibility that there were arthritic issues. I've had both hands MRI'd in Feb. Oddly a much more uncomfortable procedure than getting the spine done. That and the NCVs have also pretty much eliminated entrapments or radiculopathies. Disuse atrophy was also mentioned and discounted. But, I'm not one to be often deterred. I bought exercise putty from my PT and use it daily. I've also lost function in the front half of my right foot, thankfully it's also meant a reduction in the cramping.

As the 2nd opinion Rheumy said to me yesterday; we need to de-medicalise things and get back to a baseline. A little over a year ago, I wasn't able to walk or wipe my bum due to the arthritis. Getting dressed and undressed was an exercise in frustration and pain. Today, I can trundle for reasonable distances without aides and wiping myself isn't as much an issue as long as I can hold the tissue*. Treatment, physical therapy, effort and time got me back to this point, albeit 18Kgs heavier.

But that's not the point. There is zero point in chasing a diagnosis, of any kind. Getting better and/or not getting worse and moving forward in life is all that matters. I've been lucky in a strange way in that my arthritis came out of nowhere and hit heavy. It made it relatively straight forward for the doctors to get a treatment plan in place. There was no merry-go-round.

If I'd walked in with a complaint of a sore back, I could have whined for years to no end. That's where I figure things are with the hands. No point in chasing things any more. If it gets worse, it will make it easier to identify and hopefully treat. If it stays as it is, I'll just have to learn how to live with it.

* I have to admit that I've started using the shower as a "bidet" on occasion. The grip ain't so good with the TP sometimes.