PID and neuropathy

[lcmacg]

Does anyone else have neuropathy in addition to their immunodeficiency? I am trying to find out if there is a connection.
Thanks!

[gillie]

Hi. I'm seeing a consultant this Saturday about my peripheral neuropathy, caused by the very aggressive cancer treatment I had to have to get rid of Burkitt's lymphoma. It's made me somewhat unsteady on my feet, which I find a real trial when I'm gardening. It appears that the sciatic nerve from my knees down was killed by the chemotherapy, so there's a distinct lack of communication between my feet and my head! In my case, as you see, I can pin cause and effect together, but I don't know of more direct links between PID and neuropathy.
Best wishes,
Gillie.

[hlh]

Peripheral neuropathy is seen with several autoimmune diseases, which can be more common in folks with PI... so there's that.

Have you seen a neurologist to do some testing to see which kind of neuropathy you might have? I ask because most neuropathy isn't reversible. However, some of the neuropathies caused by autoimmune disease can be reversible. Only a neurologist specialized in neuropathy will know how to look for this.

But since peripheral neuropathy is really common, it may just be a coincidence you have both. You should be checked for diabetes, B12 deficiency at the least. It may be that your nerves are more sensitive to alcohol, so you should probably avoid that.

[ladybug64]

I do, A LOT and everywhere. Please post if you find an answer. Does the IVIG help anyone here with this symptom?

[seanpr11]

Aug 26, 2015 7:01:26 GMT gillie said:

Hi. I'm seeing a consultant this Saturday about my peripheral neuropathy, caused by the very aggressive cancer treatment I had to have to get rid of Burkitt's lymphoma. It's made me somewhat unsteady on my feet, which I find a real trial when I'm gardening. It appears that the sciatic nerve from my knees down was killed by the chemotherapy, so there's a distinct lack of communication between my feet and my head! In my case, as you see, I can pin cause and effect together, but I don't know of more direct links between PID and neuropathy.
Best wishes,
Gillie.

Hi gillie. I have severe Neuropathy in both my feet as a result of aggressive chemotherapy for Burkitt's Lymphoma as well! (I know I shouldn't be excited, but I haven't met anyone with my type, sorry you had to go through it).

lcmacg...My immunologist actually hoped that the IVIG would HELP with my neuropathy, but it's been over a year now and there has been no effect at all for me (positive or negative). (sorry ladybug64)

Sean

[gillie]

Hi Sean. I'm interested that you've had the same experiences as me. It's hard to describe to anyone, however concerned/interested they are, just what it was like, isn't it? The consultant I saw was very helpful and seemed to think that he knew of a drug that might help me, but wanted to refer me for tests which would show up just where the damaged nerves in my legs are before he went ahead with treatment. I'll try to remember to pass on to you what comes out of this. In the meantime,I'm really glad to have 'met' another survivor. It's always encouraging to hear of a cancer that's survivable, even if the treatment's horrid!
Best wishes,
Gillie.

[seanpr11]

Hi Gillie,

Yes it is hard to describe! Neurontin seems to be at least somewhat effective for me. I'm trying Lyrica again too. Interestingly, with the generic Neurontin (gabapentin), only one company's generic worked for me. 3 others had no effect at all. So unfortunately I have to use name brand (10X the cost) because the pharmacies will order whatever is cheapest for them. So bear that in mind, just because one genetic doesn't work, doesn't necessarily mean they all won't. (that took 3 years of trial and error) I'm very interested to hear how the nerve test goes, I've never had that test.

Good Luck!

Sean