Hands

[fitzroy]

This feels so shallow knowing that most of you have already lost significant use of your hands but it's the one of the few things so far in the last year of medical issues that pulls me up. It hit me yesterday reviewing a report for Salary Continuance (private disability insurance) from my Rheumatologist where she's noted the marked weakness and atrophy in the hands. It seems I probably won't get back to work this year assuming we can get to the bottom of things and onto a treatment program that's effective.

I've just returned from a long, lovely holiday overseas visiting family. This'll sound stupid. I have a hard time with light stuff. Drop it, unintentionally flick it, fumble it. Can't control it. Heavier stuff that includes arm muscles, not as much of a problem. I have new scars on the hands from fumbled knives and broken glasses. I've now had my experience with the UK NHS including visits to the A&E. This'll sound dumber. I can still eat with chopsticks as long as the pieces are big, but there are some ways my thumbs simply won't move any more.

Back to my rational self...

Part of the problem is isolating neuro symptoms from my form of arthritis (Ankylosing Spondylitis). It's extremely unusual to have this sort of peripheral involvement and there's no evidence for entrapment issues so far. It's also starting to appear in the feet; Rheumy noted similar weakness issues there as well which was news to me.

I'm scheduled for MRIs on both hands and wrists within the week and have a full consult with a Neurologist in two weeks. I suspect there will be additional imaging and diagnostic studies ordered.

I know there's no reason to suspect ALS or another MND at this point, but for right now I'm a little sad watching my hands go.

 

[olly]

hi fizroy.
i too have had a little rehumatoid arthritis in my hands for years ,i first developed in my teens after an accident that broke my left arm that was never fixed and ended up with arthritis in it.
one of my first symptoms with pls other than balance/leg problems was dropping things..........not odd times but quite ofton and my boss at work noted it, my hand to eye coordination has not been good for some years now.
i too find i fumble,its the little things we do with our hands that seem to be the hardest to do.
also using the oven is a nightmare as i seem to burn myself everytime no matter how carefull i am.

hope you get some answers soon with your tests and neuro appointment.
take care.

ps,i see your in australia......when were you seen in the uk?

 

[Kitchener]

Hi Fitz

Sorry to hear of your condition. I have a similar issue with my right hand (thankfully not the left yet), especially the thumb as you describe. So far I have been diagnosed with possible ALS, possible MMN and lately possible SMA. None of these are great options, and I'm not suggesting you have any of them (as you most likely don't). To even get to first base with ALS you need an abnormal EMG. The fact you are on this board tell us that although by your own admission you say that there is no reason to suspect ALS or another MND at this point, you clearly do. Please don't, not at this stage and not before seeing a neuro and getting tests done. It's very rare.

Good luck with it all

Kitchener

 

[fitzroy]

Hi Olly. I was in Lancashire County over the holidays visiting family. Mostly just south of Lancaster. Got back last Friday. I lost my hands, dropped a glass, fell and gashed my hand on the broken glass as I came down. About a 3cm clean cut on glass, but deep. It was two days before x-mas. Thus the trip to the A&E. So this year it was issues with anything involving much effort with the hands due to the weakness. Last year I could barely walk from the Ank Spond. Can't hide anything from the family.

Ank Spond isn't supposed to affect the hands and feet this way, if at all. I know my hands, and to some extent my feet, are stuffed. My gut sense is that it's not joint- or arthritis-related. It simply feels different than the bone and joint issues I've been dealing with. My Rheumy has been looking at anything she can think of for the last many months and nothing's come back clear. All the while, it worsens. Thus the MRIs and the Neuro referral.

I'm pretty sure I've mentioned this before, but I'm already being treated aggressively for the arthritis. I've been on medical leave for the last year to get this under control. She's said my case is "atypical" and my GP is busy consulting and exploring out-there infectious stuff. The hand and foot stuff began creeping in approx early- mid- last year and hasn't stopped despite any treatment.

 

[fitzroy]

Kitchener,

I don't suspect ALS. I dont suspect anything. That's the responsibility of my respective specialists. I'd never heard of Ank Spond before my Rheumy brought it up. The simple reason I found this site is searching the stupid web while trying to learn about hand atrophy with a normal NCS. The reason I'm hanging around is it seems to be a truly knowledgeable, no BS place to learn from as I go through whatever Dx processes I probably can't avoid.

 

[Kitchener]

Fair enough

Let's cross fingers for a clean (ie. normal) EMG for you. That would rule out ALS and hopefully accelerate the process of pinning down what's actually wrong with you. It's a total ***** being up in the air without a firm diagnosis, but believe me when I thought I had a firm one (ie. ALS) that was much worse. My amateur research has come across the often repeated stat that neurological complaints have the highest rate of undiagnosed and misdiagnosed ailments (doctor speak "atypical" = "I don't have the foggiest what is wrong with you"). I really hope they get a handle on what you're up against, and let's face it as far as ALS is concerned the odds are in your favour - it being a very rare condition.

Kitchener

 

[fitzroy]

I could swear that when writing my last post, the last sentence of my previous post DID NOT refer to an ALS Dx process. I avoid any test that won't affect my current treatment unless it's something justifiable and debilitating. I want to get back to my life. I want my life back. I want to be taking pictures again. Working would be nice too. Well yeah. I'd just prefer cooking and taking pictures. But something's wrong.

 

[fitzroy]

Apologies for the multiple posts. There's clearly a substitution algorithm in place on the site for "DX" and variations.

 

[fitzroy]

And I can't edit my posts for when I type "D...X..." Apologies again. I'm not referring to ALS in every "D...X..." reference. Is there a way a Mod can clean this up?

 

[trfogey]

Apologies for the multiple posts. There's clearly a substitution algorithm in place on the site for "ALS diagnosis" and variations.

Yes, if you use the popular two letter abbreviation for "diagnosis", it gets changed by some unknown and unfixable process to "ALS diagnosis". Been like this for about a year now. Totally wrecked some archived discussions about a particular model of power wheelchair that is popular in Canada.

 

[fitzroy]

A short update on my front. Both hands have been MRI'd and there's no indication of arthritic changes nor entrapments in the wrists. The appointment with my Rheumatologist was long and detailed about a range of issues. She's at loose ends on the atrophy and weakness and is convinced it's going to be neurological. Still, she's calling a powwow with the department to review my case. I'm also in for a number of changes to major meds over the next month or so, so the arthritis isn't going to be fun to deal with for a while.

In any case, the hands are weakening more and the right foot, well, I have a hard time moving those toes. Rheumy saw that too. It's been developing for a while but it's harder to "show" and talk about. I've had massive cramping and involuntary movement on that foot for a while and have certainly discussed with my team. Neurologist consult is in a week. Gotta work at being patient.

I sure as hell hope there's a treatable explanation for what's going on and that it's quickly found.

 

[Kitchener]

Fitz
Happy Australia Day!
I'm sorry to hear that you aren't any closer to a resolution, but believe me a neurological diagnosis can still cover a huge range of ailments ranging from benign to nasty.
Unfortunately the "undiagnosed zone" carries a lot of baggage ie. you keep getting tested until the medical profession gets a clue. Sometimes they don't. I've had MRI, 2x EMG, Lumbar puncture, endless blood tests etc etc and probably still no closer. I'm happy the rest of my body is holding in (I have one bung hand, not two like you) so I'm just doing the "Kung Fu" and bending like a reed in the wind. What will be will be.
It looks to me like you are getting some committed help from the medicos. The very best of luck with a positive outcome
Kitchener

 

[fitzroy]

Hey, Happy Australia Day to you too! It's been a very nice day here. Had a long brunch with a bunch of Poms but insisted that we drink Sparkling Shiraz with the snags.

The hands aren't bunged, yet. But they are getting there. I can keep things together for a short while and then I just sorta loose control of them or they don't work right. I two hand and cup a lot of stuff as it's just more secure and I'm starting to shovel food with utensils with the loss of dexterity. I know I'm in for a longish diagnostic process no matter what's up. I've already had my share of procedures nailing down the Ank Spond. Can't wait for a clean EMG and them finding some hidden compression happening somewhere or some such straight forward answer.