Hello everyone,

I am about six months into my experience with neuropathy and need some help in trying to get a little relief from this pain and getting a semblance of a normal life back.

Here is a little background: My neuropathy came on in a subacute manner after an incredible stressful month last September. During that month I was having panic attacks at night and sleeping only 3 to 4 hours a couple of times a week. Then one day I woke up after not sleeping well with tingling in my wrists and hands. I knew something was wrong and the tingling continued for the next few days and then turned into a burning sensation on the tops of my hands and wrists. I also experienced very light symptoms in my feet but it was so light that it really did not bother me as much as my hands.

I went into the doctor about two weeks after the tingling began for an exam and blood test to see if any thing was abnormal. The Dr. noticed some loss of vibration feeling in my toes and all they found on the blood test was low vitamin D and high calcium. They prescribed clonazepam to help me sleep and told me that this is probably a reaction from stress and would probably go away in a month or two.

I saw a neurologist at about the four month mark and at that point was actually feeling better. I felt like I was healing and he was pleased to hear that and scheduled me for a nerve conduction study. He gave me the nerve conduction study the following week and said that there were issues in the test where my nerves we're not sending information at the proper speed...I asked him how bad it was and he said it was moderately negative. His diagnosis was that I had a sensory form of GBS brought on by stress and a broken elbow I had 3 weeks before the initial onset and said that the PN should heal in six months to year. Unfortunately after about two weeks from the test I have what I felt was a major attack on my legs with tingling and pain for about one week and then severe burning in my feet and partially up my legs. This setback was huge...it really has made life miserable.

Now after seven months I have burning all the way up to mid thigh also my back has a periodic sunburn feeling and my scalp seems overly itchy and slightly painful. And of course the hand and feet pain are debilitating. It seems as this neuropathy has taken over my whole body. I have now gone on sick leave from work and if I don't get better I may be on LTD by August.

I have a few questions:

First off I looked into trying to get my neurologist to okay I V I G treatments but he told me that none of my blood work that he performed showed any reason to prescribe that treatment. I was wondering if that treatment could be offered by a provider to maybe help my condition if I pay out of pocket for it? I am desperate to keep working. Regarding my job...I love it and it is well paying and to have to leave it would be a tough thing for me...I really feel like I need to work...it has been part of me since I was a young man...I am now 53.
Needless to say i would pay my own way to get better and even go overseas to find any type of treatment.

Secondly, is it worth going to a place like Mayo or JHopkins if all the test they run can be done where you live?

Thirdly...I can't take many drugs due to my job...I mean I can now since I am on SL but to work again I need to be drug free...so is there a good topical type of cream that I can take to help with the burning...any suggestions?

I know this is a long post and I appreciate any advice or ideas on helping me battle this terrible condition. I've read several posts on this website and I can tell that it is great to see the care and love that the members of this form provide for each other. May we all get better and find peace in our lives and hopefully a cure from this malaise.

Thank you,

Sven

It is totally within your rights to seek a second opinion. I did for my neuropathy and while it didn't change anything, I felt better having a second neurologist on my case.

I'm not a doctor, but three weeks after an accident is the exact timeline I see with my auto-immune attacks. It takes my body about three weeks after a major accident or surgery to produce the anti-bodies that attack my nerve endings. As I'm learning, neuropathy is incredibly complex and the underlying condition is likely different between us, so just take this an anecdote.

I also have a great career I wasn't willing to leave and looked into paying the out of pocket costs for IVIG treatments. In my case it would have been nearly six figures for the treatment and upon advice from my neurologist I'm waiting until my condition gets worse before taking that measure. If it makes you feel better, I asked a similar question on this board

Thank you for your reply Rancar...

Have you still been able to work?

And I've heard of people going overseas for medical procedures that are too expensive in United States... I'm wondering if any type IVIG treatment is available maybe Thailand or Costa Rica or some other place… I know that these countries do offer other medical procedures at lower cost than the US and I'm wondering if someone has investigated that avenue.

I have an appt with my neurologist this afternoon and will ask him.

Sven

Did they check your b6 level???? If not, I would run and have it pulled privately. Were you ever taking b6 in a multivitamin or anything? Next to diabetes, b6 toxicity seems to be the most common causes of neuropathy, especially very sudden neuropathy.

Make them pull your b6! Especially because you were having panic attacks. I had the worst panic attacks ever when I was toxic with it. It also spread all over my body with twitching and vibrations from head to toe. Symptoms in your scalp signify probably ganglion damage. There are few toxic substances that cause neuronal and ganglion damage, b6 being one of them.

Yes. My case is less severe and likely a different mechanism. I switched to a standing desk and stood during all meetings. Personally, I found if I bounced around on my feet/walked constantly it reduced the burning and tingling to manageable levels.

My main issue is at night. I'm fortunate I can continue to work. I hope your underlying condition is alleviated and you too can return to feeling like a semi-normal person.

--to see if there are cervical spine issues, given the start of your symptoms and the progression from up to down?

The unfortunate thing is that problems with spinal cord or nerve root compression can almost exactly mimic those of peripheral neuropathies, especially when the onset is not slow or gradual. I know I have had symptoms that have been very hard to distinguish--right now I am in the middle of a painful, burning upper body/arm flare that I think is attributable to cervical/thoracic outlet/brachial plexus injury as opposed to a more systemic process, though I am undertaking investigations to see if this can be confirmed.

Hi Glenn

I have had an MRI on my spine with and w/o contrast and everything looked fine...also I had a lumbar puncture with the results showing nothing out of the ordinary. I do have soar neck muscles on occasion but it seems like that skeletal/muscular issue is not the cause of my PN.

Hi Lisa Ann

I have had my B6 checked and it was not a concern for the doc and I do take a B12 and Benfotiamine regularly but no B6 as of right now. I am a good eater of whole foods and feel as though my nutrition is not a major cause or issue with my PN.

I did see my Neuro yesterday and he is convinced that it is still a sensory form of GBS and started me on 20mg of Prednisone for 4 weeks and has referred me to a diagnostic Neuro specialist at the CU medical center in Denver where I live. I see her at the end of the month.

He did say my EMG showed enough damage that if the other neuro agrees I may be a candidate for IVIG. But he said the insurance company would be the biggest hurdle in that quest.

Anyway...thanks for your posts...I'll keep everyone informed as to my continuing journey with this challenge.