Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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Neuropathy in my Feet

deleted_user
deleted_user
UPDATE: I wrote about how I was having back and leg pain and because I had spinal surgery over 30 years ago when I was 21, I didn't know if the pain was due to CVID or to the spinal injury. I have had MRI and saw a neurologist who put me on Gabapentin. Since being on Gabapentin I have gotten my life back! I can walk again and do the physical activities that I was unable to do for the last year. I am relieved. I saw an orthopedic surgeon yesterday who indicated that everything looks well regarding the spine. The final result is that I have a "small nerve neuropathy in my lower extremities." It is felt that this is from the CVID and my body attacking the small nerve endings rather than a pinched nerve in my low back. The treatment is to just continue the Gabapentin and keep myself exercising because I also have arthritis in my low back that is causing pain. The orthopedic surgeon was honest in saying that I would never be without pain, but I am relieved that the major pain I have been having is resolved with the Gabapentin. Just wanted to update all of you. Thank you for being there and understanding this terrible disease of CVID! Hugs!
deleted_user
deleted_user
Hey Conentgal,

It sounds like you have found a decent MD in you new home state and that is great.
I am so happy that Gabapentin has been successful for you! You sound happy and ready to enjoy life again :)

:) LuLu

*Can you tell me what is Gabapentin is an how it works and what the benefits are supposed to be?
deleted_user
deleted_user
LuLu, as I understand it, Gabapentin is used to treat seizures mainly but they have found it successful for neuropathic pain as well. I was feeling like I was walking on sharp rocks and it was very difficult to walk. I don't have that feeling anymore. I'm not good at explaining beyond that I'm afraid, but if you type into Google the word Gabapentin there is a lot of info on it. It has been a tremendous help to me and I am very thankful for that. I am up on the treadmill again and life feels much better. I guess that's the most important thing to me anyway! Have a great weekend!
deleted_user
deleted_user
Hi
I was one of the people who commented on your first post about this.
Very happy to hear you found some relief. Good for you.
Also interesting to hear it is connected to CVID. I must look into that.
Have a wonderful day.
Cindy
deleted_user
deleted_user
Thank you Cindy. Yes, they are relating it to the CVID as "small nerve damage" because of my immune system attacking the small nerves of my body. The reason for this is because although I had back surgery when I was 21, the MRI shows no impingement on any nerves and my "large" nerves are fine on EMG. The damage is to the small nerves. It is interesting and I am relieved to at least know. I still have pain but not as intense so that is good. Just plugging along as you know trying to be as healthy and active as possible.
deleted_user
deleted_user
I am just glad you went for tests instead of listening to a drs opinion.
And I am very happy your feet a working....yay
Now, to talk my orthopedic dr into replacing my knees.
Take it easy on those feet.
I am the type that could get so excited I was moving again that I end up over doing it and flaring myself up....
Best to you
Cindy
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