Revolving Physical Therapy Door

[anon07072023]

I have a Dx of RRMS but I've always thought/felt that I have PPMS. I don't have relapses...it's just a steady downhill go for me.

A few months back I had PT for 4 months. Now I've started again & this time adding OT, too. Even after 4 months of physical therapy, my upper extremities strengths are around 3/5 and my lower extremity strengths are split between 2/5-3/5. And my bilateral hand grip strengths are 19 when they should be 70.

I just had a barium video swallow test again. I had it 2 yrs ago which showed dysphagia (swallowing dysfunction) for SOLID foods. This time I have dysphagia for ALL - thin liquids, thick liquids, & solids. And now it's even going into my windpipe to my vocal folds &, luckily, I'm able to get it out of my airway on my own. And the food/ liquid is getting stuck/trapped at the base of my tongue & in my vallecula. Also, have food retention lower down in my upper esophagus. Now on top of my physical therapy & occupational therapy 4xs a wk, I’m going to have to go to speech pathology for therapy – to make sure I don’t start to aspirate when I eat/drink.

Anyone else have problems like this?
Thanks!
Kelly

[anon07072023]

I was diagnosed on July 28, 2010. Thanks for all of your input.

[jensequitur]

Corrie, spasticity is caused by a poor nerve connection between the muscle and the spine. If you're having spasticity in your forearms and biceps, then there's nerve damage - probably at T5 or T6.

Kelly, when were you diagnosed?

I really hate that physical therapy keeps getting suggested for strength issues. PT won't make weak muscles stronger. What it will do is help you to compensate by using the muscles that are working better.

I have weakness in my right hand and in my right leg. This is a real problem when I've got the kid in my arms. I've learned to put my forearms on my legs and use that to push up so I can get up. I've learned to walk so that my right knee won't collapse when I put weight on that leg, so that's good.

I have swallowing issues, too. I can aspirate liquid and crumbs if I'm not careful. I drop my chin to my chest when swallowing if I have a problem, which helps to move everything in the right direction.

[Corriel]

Hi Kelly, the only thing that I have experience with that matches your symptoms is the hand/grip strength.

I have noticed a steady decline in both hands for the last year or so. Typically it gets really bad in one hand then seems to get back to about 90% or so and then the other goes.

My neuro doesn't believe it is MS related though (I'm still on the fence as to whether or not I agree) because my c-spine MRI is clear.

It sounds like your hand issues do not fluctuate like mine do so I don't have much to offer there. I do occasional have a massage therapist do myofascial cupping therapy on the palms of my hands. It keeps my fingers from curling into my palms and seems to relax the muscles for a bit.

She also does my forearms and my biceps (where I have the most spasticity) and it does help but is only temporary.

I hope things start getting better for you soon,

Corrie

[anon07072023]

Thanks Alex :-)

[HVAC]

Sounds like  you have more issues than you can handle, I have the hearing loss but mine is caused by frozen bones in my ear an not MS. I had my stapea replaced with a plastic one years ago and it gave me back my hearing in that ear. They say I need to do the other ear.

Someone else can relate to what is going on with you. I am just sorry so much is going on.

Alex

[anon07072023]

Oh...and I have bilateral hearing loss of about 60% and my corrected vision is now 20/30 in my left eye & 20/50 in my right eye....