Living with Neuropathy - Welcome to the group

Hello,
In March 2022 I was diagnosed with Parkinson's Disease by a General Neurologist.
At that time I was advised to see a Movement Specialist and waited 6 months to see a highly recommended specialist at University of Texas.
His diagnosis is Multi System Atropy (MSA), a rare, fatal disease.
If you have any advice or experience with the stages of MSA and what I will be dealing with going forward, I will very much appreciate hearing from you.
Thank you.

Good evening once again. I am right here and I will post in response to your requests and feedback. How's that?
Let's start with your feet. Yes, mine are numb most of the time. They have tingle tangles and a leather-like feel that is very tight. In order to be able to drive, my MFR therapists work on those feet twice a week. I do have to remember to lift them high enough, especially when going up and down stairs. Because my hands are also numb and I find it difficult to grip or grasp anything, I use a 1:3 CBD/THC balm at night time made by Papa and Barkley....at papaandbarkley.com. If you go there you will see two websites. One is for mailable CBD and so it is papaandbarkleycbd.com. However, I do want the entourage effect which means THC.

Oh....I almost forgot...those feet are also cold 90% of the time. The only crazy thing I do is have my toenails painted. On the big toe, I have a layer of rhinestones. I remember that my Mom always wanted her nails done so I set that up for her when she was in Assisted Living.

So....that is one way I use medical cannabis. The other way is determined by pain and the feeling of heaviness. For example, when a storm is coming, the Barometric Pressure (BP) will begin to fall. The effect on my SFN is overwhelming and I resort to a 1:1 CBD/THC tincture in an eye dropper. Once the BP begins to rise once again, I can go back to using a 2:1 tincture. I think I have been using Care by Design for years. Each dosage is consistently the same.....something that is reassuring. I can help you with dosage amounts when that time comes for you. Or you can visit a Cannabis dispensary and speak to their specially trained pharmaceutical staff.

For balance, I use a program from a company called "Medbridge". My PT selects the exercises and then we follow up with telehealth to make sure I am doing them correctly. I overdid it one time recently and my neuropathy raised its unruly head to let me know not to do that anymore.

So....how's that for starters? The only medication I take is for anxiety. Bisperone is a new one for me and I am doing a one-month trial. So far, I am impressed. Previously I took Duloxetine for several years. Anxiety leads to pain and pain leads to anxiety so this is an important element.

And one other tip and trick is to ask Jay, my life partner, to rub my feet for me. It might cost you a special dessert every once in a while but it is worth it.

I think that's enough for this evening. We are getting ready for the next storm so tomorrow will be a day of heaviness and pain. I will have a one-hour MFR session to help me get my body ready.

Please let me know your responses and wonderments........I am always here for you.

Chris

Welcome @roserogers, I don't have any experience with MSA but there is another discussion you might find helpful:
-- Parkinson's along with Multiple Systems Atrophy (MSA): https://connect.mayoclinic.org/discussion/parkinsons-plus-msa/.

Here is another site that has a lot of information and may help answer some of your questions:
-- Multiple System Atrophy - Types and Symptoms: https://www.multiplesystematrophy.org/about-msa/types-and-symptoms/.

Did the Movement Specialist offer any information or suggestions on what to expect?

John- off topic, but wondering- do you like your Teeter exercise cross trainer? Am in PT again, now for patellar tendonitis, advised my long walks are not a good idea anymore.

@centre, Yes - I really like the Teeter FreeStep cross trainer. I use it at least 30 minutes a day, sometimes longer. You can adjust the tension so that it is really easy to use with the arms and legs, or you can crank the tension up so that it takes a lot more effort with the arms and legs.

Sorry to hear you have patellar tendonitis. I originally got the Teeter FreeStep to replace my recumbent exercise bike to help build leg strength after I had a knee replacement. I also bought an inexpensive Row-N-Ride machine that lets you easily do squat type exercises which help with cardio and leg strength. 10 to 15 minutes is about my max time using it as it uses your body weight and takes more effort. https://www.amazon.com/Sunny-Health-Fitness-Row-N-Ride-Trainer/dp/B08SSFZN4P/

Forgot to mention that you can use arms only or legs only with the Teeter FreeStep.

Thank-you so much for your replies- I have trouble with exercise bikes as my neuropathy leg/foot slips off without me realizing it. Really appreciate your input.

They make foot holders to put on pedals that keep your feet on the pedal. My exercise bike came with them.

Hi Colleen. I had 3 back surgeries 2017 to 2019. None of them solved the problem. The pain has continued to get worse. I was very active before but do very little exercise anymore because it just causes more pain. The wierd problems in my legs have gradually increased. I get extreme spells of cold and pins and needles. I wear heavy pants to try to keep from getting cold because when those spells hit I just have to put heating pads on my legs. It's wierd. I am told I have neuropathy. But thats all they tell me. I am supposed to have a Stimwave spinal stimulator implanted to help with the pain. So I am always looking for information to figure out what is going on with my legs. Doctors seem more interested in treating the pain than the neuropathy. I am on hydrocodone, muscles relaxers, and gababentin. My neurologist said more surgery would just make things worse so I am hoping the spinal stimulator will help. @pat79

I am 84 and have neuropathy after chemo treatments. I was wondering if you suffer also from leg cramps or muscle cramps when you stretch. I do and while I am not taking that many meds now, I sure wish I could latch on to something that will help these awful leg/muscle cramps that wake me up in the middle of the night.
Ginger