Spasticity due to UMD (Upper Motoneuron Disorder)?

I also have upper motor dysfunction and spasticity from a neck spinal cord injury (motor vehicle injury, broken neck). Valium helps the most with the spasticity though I more often use baclofen. I have a neurologist that prescribes these meds.

When I get what you are describing- for me when I raise my arm up I get mid back spasms and cramps- I up my baclofen dose to the max dose and add Valium 2x day. It takes usually 2 weeks for the spasms to stop. For me, luckily , since I’ve been on appropriate meds, I only get these attacks a few times a year. I have yet to determine a trigger.

My spasticity also seems to worsen when I get into bed with jerking movements in my right leg. Baclofen an hour before bedtime helps a lot

My lower extremity spasticity causes an abnormal gait which increases my risk for falling. I cannot tandem walk. In a recent PT session, a vibration plate was tried. It helped tremendously! I am in the process of getting one for my home. The specific frequency and duration of use ( I use mine 9 minutes a day) have to be worked out in PT so I wouldn’t advise getting one until this is done.

It is important to go to a Neuro only PT for a course of therapy 1 or 2 times a year to be sure that the specific therapies are still appropriate.

This is just a jumping off point. I’ve lived with upper motor disease for 37 years. Only in the last 5-7 years has it been so life consuming. Any other questions I can answer, just ask.

@laura1970

Thank you so much for your feedback!
Very useful and much appreciated!💕

All the best to you!

@pennycurious1 thanks and hugs🙏 it would be great to hear feedback as your evaluation and treatment evolves

@laura1970
Thank you for your genuine interest😊
Am still waiting for the SFN skin punch results before "advancing" to neuro-muscular department at the hospital for further testing. Everything so terribly slow here!
Took me 3 years of running to all kinds of specialists till one neurologist finally examined me more properly and diagnosed spasticity. Then it all made sense! The spasms, cramps, fasciculations - triggered by exercise or simple muscle activation. The more I move the worse I feel. The only thing I still do not understand is the crippling pain. Perhaps the SNF will be able to explain more.
Will keep posting here. ☺️

@pennycurious1 if you mean the post exertional pain, the right doctors and
Pts will get that all sorted. It comes down to getting to know this new body of yours and what it likes/ doesn’t like and what it responds to well or poorly. It can be frustrating, as just when you get everything optimized, there’s another obstacle or decline or something else and one has to begin again. But you get used to it.

The doctors and therapist can also decide if splinting is something that would benefit you. Again please be sure to go to a neuro specific therapist. I go to a spinal cord center; it’s worlds apart from a general pt

Hope this helps 🤞

I want to say also that one of my mainstay activities is a warm water bath with epson salts and essential oils x at least 40 minutes every day helps so much. When I travel and don’t have access to a tub, I really notice the difference. If u don’t have a tub, perhaps a warm water pool at the local Y?

@laura1970
Yes, that is exactly what I mean. Thank you so much for your really helpful suggestions.
Regarding neuro PT I have been trying to find one in this part of the world with no success yet, but will keep looking. Maybe, as you have suggested, at a spine center.
Thanks again!
Hugs!🥰

@pennycurious1 if you mention what part of the world you r in, perhaps someone here can steer you towards one.

I don’t think a spinal cord center would be exactly right for you, though you can ask. I know at the one I attend, the morning appointments are dedicated to out of town guests who do an intensive 3 week course while staying at a nearby hotel. If you find a really good place that is far away, you could inquire about this possibility

@laura1970
I am still waiting for the lab results for SFN. I live in Austria, Europe, and I am totally frustrated how slow and careless medical services are here. I will not receive any further neuro-muscular diagnostics (UMD, spasticity, muscular disorders etc.) from the hospital until SNF can be ruled out. For pain management I have been referred to a pain management center: first available appointment in 4months! My condition is worsening week by week, I have pain almost 24/7, burning tongue non-stop and my leg muscles are getting weaker, now also starting in both hands - a weird feeling of stiffening and cramping. I started taking R-ALA and will continue to take it even though I feel no difference.

Hopefully will have news soon.

But let me thank you all here for sharing and caring and reassuring people like me that we are not alone with our frustrations and pain💕❤️

Sending love to all of you out there!

@pennycurious1
I have started to develop spasticity issues and a long list of supposed unconnected symptoms the last 8 yrs. I have finally gotten diagnosed thru a genetic test (4th or 5th) that showed a diagnosis of Hereditary Spastic Paraplegia SPG7. I started getting symptoms around age 38 to 40yrs. It took another 2 yrs to get a dx of dysautonomia from a vascular surgeon. Much luck on your journey to a diagnosis. I take robaxin and tiazanidine for spasticity and wear compression stockings and try to keep my body from getting chilled as that can really make the spasms get bad.

@aleciarickabaugh

Thank you for your reply . Your feedback is much appreciated. It is very comforting to know I am not alone with the pain.
I have now been diagnosed with SFN and further testing including autoimmune related markers is currently in progress.

Wish you all the best and thank you again!