Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@lakelifelady

Wondering if a feeling of being sweaty, clammy and damp all the time even though my clothes and skin feels dry is a neural phenomenon.

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Hi @lakelifelady, Mayo Clinic has a symptom checker that may help you figure out what might be causing the problem.

https://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

Have you discussed the symptoms with your doctor?

John

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@cwallen9

I have very similar symptoms for about the last 4 months. I also have bad upper back issues. My short fiber neuropathy started immediately after a cervical spine steroid injection (Kenalog). I just saw a neurologist at the Cleveland Clinic who did not offer any real help. I am thinking of trying IVIG treatments for autoimmune disorder. The Cleveland Clinic doctor thought that I may have an autoimmune disorder. Has anyone tried that?

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I've had IVIG treatments for over 2 years for CIDP and small fiber neuropathy. A neurologist has to recommend IVIG for your condition. Insurances are not always receptive because it is an expensive treatment. Most doctors won't push for this treatment for small fiber neuropathy unless all other drug options have been exhausted.

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@dustins76

Neuropathy is no joke. We understand what it's like but people who have not experienced it dont understand to the extent of how debilitating it can be. I wish they could find a cause for why we have it so we can fix the issue to get the neuropathy under control.

One thing that helps me deal with the pain is to stay positive and try to keep a smile on my face. Also my almost 4 year old little girl and my very supportive wife helps.

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The pain is debilitating, I agree. What I do to stay positive is to practice gratefulness throughout the day. Keeping a greatful journal helps too.

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@dustins76

Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.

I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.

Sorry for going on and on.
Thank you for listening (reading).
Dustin

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@dustins76
Dustin, it is a maizing you are upright. I do not have nor have I ever had what you have, you may just keep it. So, what I say you do not have to believe. I have some neuropathy from my 2 strikes, my body and brain are not talking with each other at the same time. It can also be true for anyone who has surgery on their back, the messages from the body goes through the spine to get to the brain. (Talk about the "bug" that was found in the "walk in" computer that shut in down.) You could have a "bug" that is causing all your problems. Now, if you believe that I have this bridge I want to talk with you about.

I believe we are ahead of the medical community. The brain is still a mystery to most of the doctors, it may take another 10 years before doctors finally get through medical school and understand the brain better and how it works. Keeping a journal is all we can do and share it with anyone and everyone who wants to read it. I have educated a few doctors because I keep at it. If explaining something one way does not work I will try another way (with more information) the next time I see the doctor. The more you know when something happened and what you were doing before it happened the better you may be able to figure out the relationship between the two. If there is one.

Good luck,
mlmcg

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@steeldove

@sherlock If you're near Boston, see if you can get an appointment with Dr. Louise Oaklander https://neuropathycommons.org/anne-louise-oaklander-md-phd

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Thank you for the name referral of Dr. Oaklander. I will definitely check her out!

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@johnbishop

Hi @lakelifelady, Mayo Clinic has a symptom checker that may help you figure out what might be causing the problem.

https://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

Have you discussed the symptoms with your doctor?

John

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Yes, I have had a metabolic work up, have seen a Nephrologist, have seen my Endocrinologist, yet symptoms persist and they are new to me, never having experienced such before. Sodium levels are always low and my kidneys abnormally hold water. Lowering fluid levels and increasing salt in diet are two strategies suggested as well as a trial in Clodinine and doing a hormonal lab. I have had a heart attack and a TBI from a car accident and an oblated thyroid gland. I am of normal height and weight. The symptom checker does not seem to fit for me.

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I was diagnosed three years ago with it. I'm finding that I'm have the little shocks all over my body. Tried to set up an appointment with the Arizona Mayo Clinic, as I read they have great neurologists there. However, I found out they will NOT take my Medicare Advantage plan. I was told I'd have to pay up front to see a doctor. Am I the only one that thinks this is total BS? Minnesota and Florida clinics will take it but not Arizona. My guess is it's close to California and they might think people with lots of money will come and pay it. I for one, do not have that. I live in the Midwest and will spend the month of Feb visiting my sister by Scottsdale. I'm so upset.

REPLY
@dustins76

Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.

I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.

Sorry for going on and on.
Thank you for listening (reading).
Dustin

Jump to this post

@dustins76 Wow, your neuropathy symptoms sound so familiar. When I talk about the symptoms in the legs and groin, the doctors just look at me funny. Do you see neurologists at Mayo? Were your surgeries done there? If not, where?

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@wendyl

I was diagnosed three years ago with it. I'm finding that I'm have the little shocks all over my body. Tried to set up an appointment with the Arizona Mayo Clinic, as I read they have great neurologists there. However, I found out they will NOT take my Medicare Advantage plan. I was told I'd have to pay up front to see a doctor. Am I the only one that thinks this is total BS? Minnesota and Florida clinics will take it but not Arizona. My guess is it's close to California and they might think people with lots of money will come and pay it. I for one, do not have that. I live in the Midwest and will spend the month of Feb visiting my sister by Scottsdale. I'm so upset.

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@wendyl– I went to the Scottsdale Az. Mayo last April and have Medicare AARP Advantage plan F through United Health and had 2 days worth of tests done with absolutely no cost to me! I would definitely make some calls to your Advantage Plan to find out why this is happening? Good luck to you! Jim @thankful

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@thankful

@wendyl– I went to the Scottsdale Az. Mayo last April and have Medicare AARP Advantage plan F through United Health and had 2 days worth of tests done with absolutely no cost to me! I would definitely make some calls to your Advantage Plan to find out why this is happening? Good luck to you! Jim @thankful

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That's interesting because we have exactly the same insurance. United Healthcare Advantage Plan. The gal at Scottsdale told me my insurance was acceptable and they take no Advantage plans
What is type F? My husband doesn't know about that one.

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@thankful

@wendyl– I went to the Scottsdale Az. Mayo last April and have Medicare AARP Advantage plan F through United Health and had 2 days worth of tests done with absolutely no cost to me! I would definitely make some calls to your Advantage Plan to find out why this is happening? Good luck to you! Jim @thankful

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There is an Advantage plan but no Advantage z plan part F. Are you paying a monthly premium ? We don't.

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@sherlock

I've had IVIG treatments for over 2 years for CIDP and small fiber neuropathy. A neurologist has to recommend IVIG for your condition. Insurances are not always receptive because it is an expensive treatment. Most doctors won't push for this treatment for small fiber neuropathy unless all other drug options have been exhausted.

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The Cleveland Clinic doctor said that he didn't think IVIG treatments were very effective. Have they been effective for you? My sister's niece had Lyme disease with neuropathy symptoms and she had IVIG treatments helped her. When you have small fiber neuropathy you'll try anything.

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@cwallen9

The Cleveland Clinic doctor said that he didn't think IVIG treatments were very effective. Have they been effective for you? My sister's niece had Lyme disease with neuropathy symptoms and she had IVIG treatments helped her. When you have small fiber neuropathy you'll try anything.

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Most neurologists treat small fiber neuropathy with drugs like cymbalta, lyrica, neurontin,etc. Since I have CIDP, the first treatment is IVIG. It's most effective for small fiber too but insurances don't want to pay for this treatment. Most doctor's don't want to do the paperwork to justify IVIG treatment for SF.

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@steeldove

@dustins76 Wow, your neuropathy symptoms sound so familiar. When I talk about the symptoms in the legs and groin, the doctors just look at me funny. Do you see neurologists at Mayo? Were your surgeries done there? If not, where?

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I know the feeling of doctors looking at you weird. My Family doctor has been the one who has helped me the most in getting tests ordered and talking with the other doctors. All my doctors are at Medical University of South Carolina.

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Incase anyone wants to know. I got my skin biopsy evaluated at Therapath.
Rt Calf 3.92 >3.8 abnormal 3.8-4.5 low normal
Rt Thigh 3.92 >6.2 abnormal 6.2-6.8 low normal
Also I am 42 years old.

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