PPMS - hand stiffness

[chairbear]

Good morning community,

Is there anyone out there experiencing severe hand stiffness/loss of hand function/balling up? My Neuro initially thought it was contributed to chronic inflammatory demyelinating polyneuropathy (CIDP) on top of my battle with PPMS (primary progressive). After many visits to neuromusculars, the CIDP has been ruled out. We now believe I am battling a severe PPMS.

I am on therapy... Ocrevus, baclofen, tizanidine, Lyrica which produces some relief however, I have continued to decline in my function. The stiffness and curling/balling up in my hands is the real issue, does anyone know of any drug therapies (not that I trust big Pharma) that produce any relief?

Many thanks!

[Humbrd]

I have a hard time with my right hand. The muscles are very stiff and I have a hard time making a fist. I guess the opposite of your hand wanting to ball up. I had injections in the area but it really didn't help. I found no solutions to the problem. Sorry I am no help. But I hope that you do find a remedy for this.

[chairbear in reply to Humbrd]

Thank you for your reply!

[Amore55]

Hi! In the past I have found that a bowl of dry rice in a bowl works! Let me explain. I was taught to place my hand deep into the rice and squeeze, then release, squeeze over and over. I strengthened my hands a lot. They have regained a lot of the strength which I had lost. Funny, but it really did help.

[chairbear in reply to Amore55]

Thank you for your reply!

[ahrogers]

I wonder if botox or other injections might help or if a TENS unit would. Hopefully you already get physical therapy.I hope you find something that does!

[chairbear in reply to ahrogers]

Thank you for your reply!

[Neworleanslady]

I find i have more problems with coordination, especially of my left hand. I find my walking has declined and the coordination is worse since being on ocrevus (although some things are better, like less fatigue). My dr said i could try different dosages of baclofen (i was already on it) and i found increasing it by just 1/2 a pill made my legs get tired SO fast. I’ve stopped baclofen altogether. I’ll see how that does-

Good luck to you in finding a solution. Maybe a resting hand splint at night (when sleeping) that extends your fingers

[Humbrd in reply to Neworleanslady]

That's a great idea to use the hand splint at night. I hope chairbear tries it.

[chairbear in reply to Neworleanslady]

Thank you for your reply!

[Jesusfreak72]

I think you might be dealing with the MS. I have PPMS as well, and I'm having similar trouble with my hands. Mine don't ball up like you're saying, but I'm slowly losing my grip and I drop things all the time. I'll admit though, I do have several other issues going on, but arthritis of any kind isn't one of them. I've always had VERY strong hands, so after talking to my doctor, he seems to think it's progression. Sorry you're dealing with this, maybe ask your doctor about different types of arthritis and maybe there's something out there that can help?

[agate]

chairbear, I've had hand problems for years though not the balling-up you describe. I'm fairly sure mine are due to osteoarthritis. Fingers are swollen and somewhat bent, and there have been episodes of pain/stiffness/swelling/redness/immobility in the finger joints. For me it's all part of aging so far as I can figure out but yours may be due to MS or some other cause. I also broke my right wrist years ago and have had somewhat limited mobility in that hand on account of that.

[BlanketTime1]

limboland here. a few years ago right before i started having trouble with ataxia and dystonia, i noticed my right hand wanted to close all the time. i found a video by a woman with ppms. i can't remember the title. anyway, she recommended using compression gloves to force your hands open. unfortunately, none of them last very long so for about 10 months every month i bought a new pair. luckily, they're not that expensive. it didn't help so much with the pain of the muscle spasms, but i was able to do more. i found mine on amazon.