Connect
Everyone with Peripheral Neuropathy
We all experience pain and loss of feeling in hand feet etc
The reasons for the nerve damage vary with many groups. Simplifying this into two main groups:
(1) Those with progressive conditions like diabetes, alcohol of similar. Naturally the doctors try to treat the cause of the damage probably before they treat the pain
(2) Those with one off damage from toxins, viruses that have damaged the nerves as a one off event - the doctors in many of these cases say idiopathic and offer pain relief.
But we all have pain and reading your comments I suspect that we all have good days, bad days and very often there appears to be no reason.
I think it would be interesting to share the things that excite the pain.
I know if I drink lots of strong coffee, sit cross legged and stop the blood flow on a cold day my chances of pain are much higher. If I drink some red wine on a warm calm day outside they are less. This is not scientific but it could be.
If we had a structure database that we all contributed to we may see strong patterns that could be used to guide people to have less pain.
Anyone interested either technically, financial or as an information contributor? Maybe Mayo Clinic would read the data and comment?
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
Red wine and diclofenac are my nightly routine for my PN. I never know when it will hit.
Mine comes from chemotherapy for BC. After chemo when I went to my first appt with my oncologist, the first thing he asked was, "How are your feet?"
I am a diabetic, but well-controlled. I also now have Purple Toes so I will be seeing my Podiatrist next month.
Similar - my PN came after a toxic event (spike drink) - test show it has not progressed (apart from a little aging) over last 12 years - but the pain stays. I had blue feet at the start. Has your PN progressed since the Chemo?
I have tried it to and it has helped somewhat.
-
Like -
Helpful -
Hug
1 ReactionI would definitely be interested. So far I haven’t come up with any rational explanation for my idiopathic neuropathy pain in both feet. Exercising, not exercising, different diets, sleep positions, vitamins and supplements, special insoles for my shoes, you name it. Nothing seems to make a difference.
Does medicine like cabamazepine, carbamazepine, gabapentin permanent cure neuralgia pain? No need of MVD surgery? Has anyone gone for the surgery and was there any side effects?
Welcome @nashdak, They don’t cure the condition but just treat the neuralgia pain symptoms. Hopefully members with experience can share more about MVD surgery.
Have you discussed surgery with your doctor?
-
Like -
Helpful -
Hug
2 ReactionsYes in Feb when I had this episode neurologist said medicine is not working so Surgery. As my pain come twice in a year for 2montha. Strange. So now I am having the pain and neurologist appointment date is 26th Aug.
I have seen few online neurosurgeon who are also recommending MVD.
One of the neurologist I saw in other hospital said there are severe side effect and risk of MVD so better you try medicine which also has side effect but compare to surgery is better. But medicine is not working so I have to take the risk. I hear it is 80 to 90% success rates.
-
Like -
Helpful -
Hug
1 ReactionYou might find it helpful to scan through this search of Connect where members mentioned Microvascular Decompression surgery in their posts - https://connect.mayoclinic.org/search/comments/?search=Microvascular%20Decompression%20Surgery.
-
Like -
Helpful -
Hug
1 Reaction