No wonder there is so little being done about Neuropathy!

Hi @avmcbellar
I got nauseous when they evaluated the cause of my balance issues on an apparatus (I can’t remember the name for it). The testing was done at a Rehabilitation Hospital that treats brain injuries and those in severe accidents so it had specialized testing equipment. It was in 2014 and I was hooked up with straps like skydivers wear to jump, which kept me from falling. Then different moving scenes were played on a screen directly in front of my eyes while the floor tilted in different directions. It tested my proprioception and tested whether my balance problems were caused by my ears or eyes. It showed a lack of Proprioception. After I finished PT they used it again to show how much I had improved. It still made me nauseous. I don’t recall having trouble controlling head movement. I am still walking without a cane, but I have weak quads in my thighs from multiple conditions, so I have trouble getting up after squatting down, and I can’t walk very far because of it, but my balance is good.

Thank you for your reply @njh. I didn’t go through any such test. Probably didn’t need to since my eye problem was obvious. I appreciate the information. My neuro ophthalmologist agreed with the double vision being a cause for my nausea. Only thing is we won’t know how much until the corrective surgery will be done. Oh well, one step at a time for me, lol. I am hoping the eye surgery will allow me to do more activities. I am so glad you conquered your balance issue. You are an inspiration! Being patient and determined certainly pays off. Do you continue with exercises to become stronger especially in your quads? Can PT recommend exercises for you to do? I was very active prior to my AVM. I want to do more exercises but my double vision and nausea prevents me. Good luck to you. I am sure you will find the way to walking longer distances.

Hi @avmcbellar
Thank you for your reply. I’ve developed so many types of neuropathy that the nerve damage and muscle atrophy causes the quad weakness in my thighs. I have small fiber neuropathy, polyneuropathy, and autonomic neuropathy. They are from very low B12 (71) in 2000, Diabetes for 27 yrs, and I had Myeopathy in my legs in 2006 from a flattened spinal cord at C5/6 & C6/7 which was fused with plates & screws. I have been to PT multiple times and my pain and balance was helped but not my leg strength. I get around okay but am unable to exercise.

G-D bless you Margaret, I hope they find the cause. If they do, what could be done to stop it. I have peripheral neuropathy in my feet and tried many things. Stem cells 5-6 years ago did nothing but drain my bank account of $10,000. Good luck to you.

Julkun,
I've had lots of autoimmune testing done and it's all come back negative. As far as we can tell right now, a gene mutation is the most likely cause. I've had 72 genes that are known to be culprits for neuropathy tested, and all have come back normal. The only abnormal gene I have is SDHB, and it has not previously been identified as a gene that can cause neuropathy. However, my neurologist has ordered a mitochondrial culture test to determine whether my mutant SDHB might in fact be causing my neuropathy. The cost will be out of pocket. If nothing pans out with the mitochondrial test, then we'll do the whole exome. The exome sequencing might be covered by a study grant.

I'm 65 years old. I want to know what it is that has left me disabled since 2007. There have been over 100 neuropathy-causing genes identified to-date, and more are being identified as time goes on.

Assuming they ever do identify the mutant gene causing my neuropathy, the next step would be gene therapy or a pharmaceutical to inhibit the inflammation. Neither of these options exist now, though there does seem to be some work being done. I think it will be several years before anything would reach the market.

Best of luck to you,
Margaret

Margaret, I agree, inhibiting the inflammation is the goal. I am going to PT now. I'll try new ideas but some things they do inflame my nerves in my feet. They just don't understand. I keep getting the question: "Where does it hurt? On the bottom, the toes?" I tell them that my entire foot hurts from within, numbness, hot, cold, cramping, etc. They just don't understand. Then I get the questions from family, "If it's numb, then how do you feel pain?" I'm just a few years older than you and we need this solved ASAP to have quality of life. I think there are many causes of PN, the pain during inflammation is the enemy. And are you sick of seeing every "miracle cream"? Sorry for ranting. LOL Stay well, Jules!!!

Anne Louise Oaklander Is a small fiber neuropathy researcher with Harvard medical/Massachusetts general. She has a couple of lectures on YouTube. in one of her lectures she talked about the prevalence of neuropathy amongst those with fibromyalgia. With a much higher incidence of neuropathy she would be better positioned to get grant money. It’s all about the numbers. she also has a grant to study Iraq war syndrome and its correlation to small fiber neuropathy.

Hello @polywog, Welcome to Connect. I see you have recently joined Connect and have posted in several neuropathy discussions. Thank you for joining these discussions. It is really helpful when other members with neuropathy share their story and what helps them. You may also be interested in a few other discussions and find them helpful:

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Do you mind sharing what you were searching for when you found Connect?

Sure. In one of my posts I talked about the soft plush fleece that I made into sheets and pillowcases. It felt so wonderful and I was so excited I was telling my sisters I should go on a forum and tell everybody with small fiber neuropathy about this. I know how extraordinarily difficult it can be to find comfort when you burn. I mean the slightest air movement can be painful. And in my case I burn head to toe 24/7. Like a really really bad sunburn you don’t want to touch. So any little thing that helps, I just wanted to share, hoping it may help someone.

@polywog, Thank you so much for your answer and thoughtful response. What you said is the heart and soul of what Connect is all about - patients helping other patients.