Living with Neuropathy - Welcome to the group

Hi Tina, I posted a link earlier in the discussion that you might find helpful here - https://connect.mayoclinic.org/comment/915885/

I've had a number of trauma injuries over 45 years of life which have resulted in some significant nerve damage. Although I've seen many Specialist there has been no specific type of neuropathy diagnosis, although most is peripheral, because there's always been more pressing issues to contend with which steers Investigations in other directions.

I had a spinal injury 25 years ago and fractured 3 vertebrae after a fall on a working holiday in England. At the time although I knew I'd hurt myself I continued to backpack with a 25 kilo backpack around Europe. Hindsights a great thing but when we're young we believe we're infallable. A spinal fusion followed 6mths after I returned home. I suffered nerve damage and I've had 3 dorsal Column stimulators implanted over 20 years to help with nerve pain.
I've had a number of other injuries which resulted in ongoing nerve problems. I broke both ankles (at different times) which were pinned and put in casts. The plaster had to removed with both due to severe nerve pain affecting the external parts of my ankle. I couldn't stand to have anything touch my ankle for at least 6 mths, no shoes, no sheet/blanket and at times even having my foot in water whether it be the shower, bath, pool was excruciating. Lots of desensitisation work to help my alter my bodies response to stimulus of any sort.
I had severe type 2 diabetes for which I was on insulin for over 5 years. I'm happy to say this is now controlled through diet and lifestyle change and I no longer have any medications to treat this.
I have moderate degeneration of thoracic and cervical spine with neuralgia affecting my strength and body's response (over sensitive or sometimes lack of sensation) to stimuli.
I also have a Chiari Malformation which was diagnosed after a head injury. I stood up and became dizzy, fell and was knocked out on the TV cabinet on the way down. It's believed the impact forced my brain through my skull and into my Spinal canal. A previous cranial CT before the accident did not show a Chiari which is how this reasoning was attained. In addition to Chiari it is suspected I have Syringomyelia (Syrinx or cysts on the spinal canal) which affects my strength and alters many sensations sometimes causing intense pain other times resulting in paralysis. The Syrinx if not treated appropriately may continue to cause irreversible damage. Because of my dorsal column stimulator I have been unable to have MRI scans which has meant some diagnosis can not be ascertained. The decision has been reached to remove the device so MRI's can be taken which will happen in the next couple of weeks. I will then fly interstate in Australia to have decompression surgery and possible fusion of cervical spine. They will also decide how to treat the Syrinx. I have facial neuropathy which results in severe facial pain that brings me to the ground it is so severe. In combination with pain I have paralysis in my face, again my face responds in different ways to stimuli.

My team of specialists are somewhat baffled by the complexity of my conditions but they are slowly being able to bring it a together and gain a better understanding of what's going on and why. That's it in a nutshell, there's more to it but these are the basics. Hope this gives a bit of insight

It’s a malady that is certainly not tenuous. Explaining the pain to others is not easy.
I am currently off the usual prescriptions gabapentin, pregabalin etc as they offered no relief.
I do take Alpha Lopoic Acid
with a small degree of help. Additionally, I take 15 mil. of oxycodone at varied doses during the day 5@5am 2.5@ 11-12 and 7.5 @6-7pm
I have found this to ease my pain through the day.
I have seen 2-neurologists providing little value. I will be seeing another that apparently, thinks outside of the box, and is world renown. It will take me 6 months to get an appointment UGH!!
Physical therapy has done nothing. I currently average over 8000 steps a day but although my strength is better my pain persists.
Thank you allowing my loquacious diatribe
It makes me feel not alone
Regards,
Ron
I hope 🙏you find some relief

@ronoejello1 Hi Ron, sounds like you have run the usual neuropathy race.
Many of us go to more than one neurologist hoping for something better than what we got from the last one. Unfortunately, that rarely happens.
I’m curious about the doctor you are waiting to see. He thinks outside the box in what way?

If anyone tells you that neuropathy can be cured, run the other way…I’m sure you know that, but the pain we feel sometimes makes us desperate for an answer.

I have Chronic Inflammatory Demyelinating Polyneuropathy. My neurologist just started me on Gabapentin. I’m only taking 100mg because it’s too sedating for me.
I’m not able to take any of the usual pain medication given for this because again, I would spend my days sleeping.

I am impressed by how you can walk that far every day. The polyneuropathy causes my legs to be really weak so I can only stand for short periods of time. My balance is very bad, and I have foot drop.

Isn’t life grand!

It’s a malady that is certainly not tenuous. Explaining the pain to others is not easy.
I am currently off the usual prescriptions gabapentin, pregabalin etc as they offered no relief.
I do take Alpha Lopoic Acid
with a small degree of help. Additionally, I take 15 mil. of oxycodone at varied doses during the day 5@5am 2.5@ 11-12 and 7.5 @6-7pm
I have found this to ease my pain through the day.
I have seen 2-neurologists providing little value. I will be seeing another that apparently, thinks outside of the box, and is world renown. It will take me 6 months to get an appointment UGH!!
Physical therapy has done nothing. I currently average over 8000 steps a day but although my strength is better my pain persists.
Thank you allowing my loquacious diatribe
It makes me feel not alone
Regards,
Ron
I hope 🙏you find some relief

Thank you Ray for your reply and information on neuropathy, looks like mine is a mix of different neuropathies affecting digestion dreadfully.
I most certainly will check them out, am desperate for an improved q.o l .
Thanks,
Tina

Hi, Ron

I too am impressed with how far you're able to walk. 8,000 steps is remarkable! It certainly would be for me. Being unable to walk with ease is my No. 1 disappointment as a result of my PN. Walking with ease is also the No. 1 thing I would like to recover if the day should ever come that's possible.

All the best to you!
Ray