Small Fiber Neuropathy: What helps?

Hello everyone. I was recently diagnosed with small
Fiber neuropathy in thigh and calf( has skin biopsy) with autoimmune etiology - antibodies to voltage gated potassium channel. Cancer has been ruled out . I have been dealing with right thigh pain , spasms stiffness cramps and burning pain since 6 years now ,finally got diagnosed.
Since last week I have also have developed same symptoms in the right calf as well. Can’t walk without a limp now, it’s so painful. I am currently
On carbamazepine 200 mg twice a day(it did help with my thigh stiffness to certain extent) I am being planned for IVIG waiting for insurance approval . Has anyone received such diagnosis and had any good response to IVIG?
Thank you in advance
Wishing all of you good health

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Hi Aruhela2021, you may want to check out the TS-HDS FGFR3 or the Neuropathy forums on Facebook which you have to ask to join. There are many who have had, are having or are waiting to have IVIG therapy, their info may be beneficial, most seem to have improved their pain and/or controlled the progression, good luck whatever you decide. Helen

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Thanks for your reply.
Yes I have been checked for that through nerve conduction study. The condition I have is called neuromyotonia and it explains all my symptoms and clinical course. I just want to know what are my odds of responding to IVIG and hear someone’s experience ,as the treatment will be initiated 6 years into my illness.

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Hello @aruhela2021 - I would like to add my welcome to Connect along with @steeldove and other members. I did a search of Connect and was not able to find a discussion for neuromytonia (Isaac syndrome) but did find information on treatments on the NIH Genetics and Rare Diseases Information Center.

- Isaacs' syndrome: https://rarediseases.info.nih.gov/diseases/6793/isaacs-syndrome

You mentioned the IVIG treatment is initiated 6 years into your illness. Are they starting any other treatments prior to an IVIG?

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Hi Everyon 1m a newby. Really hoping that someone may have similer symptoms to myself in that they could give me some advice First of all my condition is very complicated, I've never had a firm diagnoses even though it has been going on for three years, Neuropathy was mentioned but which one . Cut a very long story short approx 3 yrs ago I suffered with lower back pains, left side only of which became increasingly worse over time. Paid for an MRI and the outcome was I have couple of discs slightly pinching on the nerve. Was told not a big problem that injection in base of spine should help, after two separate injections i new it was not helping in fact pains became a lot worse. As time went by the whole left side became unbareble. I tried to keep active but i just couldn't carry on with the walking aside of that my body started to suffer from other symptoms, majority left hand side of the body but some migrating to the right, from head to toe literally, nerve and tissue pains every where, including private parts. ( Excrutiating and Constant ) I've been around and the world and back again with seeing GPS etc some of which I paid for. I am now housebound trying to cope with most hellish pains. I've had to chase the pain clinic as they let me down yesterday regarding phone call appt. So damned frustrating whivh reverts me to tears when I cant get hold of anyone to explain the urgency of my case. I meant to say I was a very active woman with happy disposition. That's been taken away purely because the medical profession would not listen from the start. Sorry for the rant and lengthy explanation.

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Hi @poppsy1, Thanks for sharing a little more on your symptoms. There is another discussion that sounds similar to your symptoms where you can meet other members and learn what they have shared. You mentioned the MRI showed you have a couple of discs slightly pinching on the nerve. @jenniferhunter maybe able to share some suggestions on questions to ask your doctor or other suggestions.

MRI results show bulging discs: what are my options?: https://connect.mayoclinic.org/discussion/mri-results/

Have you thought about seeking a second opinion at a teaching hospital or a major medical facility?

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Hi John Thank you for the suggestions. must addmit I havnt thought about a major facility. To be honest I am at a loss and exausted as to know what to do next. I have tried every avenue bar the one you have suggested. You mentioned about another discussion on similer symptoms, where do I find this. Many Thanks

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@poppys1 This is the discussion I was thinking might provide some help from other members - MRI results show bulging discs: what are my options?: https://connect.mayoclinic.org/discussion/mri-results/

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