Hey Chris! Good to hear from you again! I do remember you very well! We had an email chat with each other about the VA and getting a second opinion. So glad they have given you a diagnoses.
Many years back before I got diagnosed with Lupus my first neuro I saw wanted to say I had HNPP! But he was wrong and I did not agree with him. I was having Lupus symptoms and the testing back then was not that great as it is today. Big difference in the medical field compared to what they have today.
I did alot of research on HHNP back then and it just didn’t seem to fit with me. I had the Lupus rash and other Lupus symptoms. Mine turned out to be Nervous System Lupus instead of HHNP. I was never tested either for the Genitic factors too.
There is a wonderful website that has alot of information and nice people in there that can share the same things you are going through but we also hope you stay here with us too. You leaving us will make us miss you! 😉
There are several different kinds of HHNP’s that have been diagnosed. And some are treatable while others are not. Some people they just treat the symptoms but this web site can help you understand your illness and help you in many ways.
Here is the site: [url]www.HNPP.org[/url] or you can just type in your browser
HNPP.ORG and it will come up.
Very interesting site with alot of useful information.
Hope this helps! But please come back here and visit us!
Hugs my friend! Hugs
Linda H

I am so sorry to hear about your situation. I know you are very frustrated. I want to ask if you have considered the possibilty of multiple sclerosis?

My father had GBS in 1993 and recovered fairly well. He never completely regained good control of his right foot and lower leg and slowly over the next few years, began to have regression to the point he could only walk with a walker for short distances. Like your results, his nerve conduction tests showed no active damage to the myelin sheath. After seeking care with his regular doctors and the initial neurologist and getting nowhere, we sought a second opinion. Fortunately, we got an aggressive neurologist who was not satisfied with shrugging these problems off. He admitted my dad to the hospital and ran every test imaginable. He was diagnosed with normal pressure hydrocephaly and MS. The neurologist says that GBS did not cause the MS; but that the likelihood of two autoimmune disorders in an individual can be possible.

Though we were initally upset to think he now has MS, we at least do have answers that we didn’t before. If you aren’t satisfied, please try to work out a referral for a second opinion.

I just read your post today. In 2005, almost 30 years after having GBS, I began to have tingling in my feet and developed carpal tunnel in both hands. After my neurologist ran tests, she said I had nerve damage from GBS and also had evidence of an inherited neuropathy. I did not do genetic testing but believe the diagnosis was accurate because my mother and aunts also had some neurological problems. My cousin was diagnosed with MS years ago, but now they say she does not have MS, but rather an inherited neuropathy and fibromyalgia. The awful truth is that neurological disorders are extremely hard to diagnose. The same goes for autoimmune diseases. Most people with one autoimmune disorder have others. GBS is usually easily diagnosed, but MS, CIDP and inherited neuropathies are not.

Hi Chris,

I’m sorry I can’t supply answers to your questions. 🙁

Prior to today, I’d never heard of HNPP; no surprise there as I hadn’t heard of GBS prior to being diagnosed. I’m not at all familiar with HNPP and googled the link supplied by Linda. I’m happy you may have received a diagnosis and have hopefully started treatment.

They did quite a bit of testing to determine the cause of your issues and was the genetic blood test the main reason you received the HNPP diagnosis?

Like you and Boomerbabe, I’ve been fairly functional until this past year and I considered my issues to be residuals from GBS the (tingling, numbness in hands and feet, etc). As Boomberbabe mentioned, it appears that neurological issues/disorders aren’t easily diagnosed. sigh

Take care all

Tina,

Just read your post and want you to know that you are not alone. I thought I was fine for years, and then began having more and more problems, tingling, fatigue, weakness, odd sensations, etc. I have come to the conclusion that GBS never really leaves you. I think neurologists are finally coming to understand that GBS is more of an ongoing process.

Hi Chris,
I just read your post and wanted to give you my support. I suggest you seek another opinion and be sure to see a [U][B]neuro-muscular[/B][/U] specialist. I have CIDP without the lumbar protein elevations or usual diagnostic red flags. I too, have slight drop foot and a lot of sensation issues but look very functional. In fact it wasn’t until 6 years after being diagnosed that I got sick and needed treatment. I too can function for a while and then my body gives out. It seems I function best when I function least if that makes any sense. The less I do the better I am. Which can be a mental challenge. Anyway, not to digress, I just thought I would throw in there that CIDP can look like many differant things. What is the advised plan of treatment for you now? Just curious.
Take care.
Linda

It sounds like you had a very thorough work up and some specific diagnostic markers that would give me confidence in the diagnosis. That being said, if you still have reservations, why not seek a second opinion. It is always good to do that with anything unusual and it may give you more piece of mind.

Did they recommend any treatment for you now that you have this diagnosis? Perhaps starting treatment would be like a “second opinion.” If it helps you, then you may also have more confidence in the diagnosis.

It reallys sounds to me like they may have finally pegged it. Best of luck to you.

Oh, if there is a foundation for HNPP (sp?), you may want to contact them and ask who is the guru doctor for that disease and see if they will review your medical findings. With anything unusual you really need to find people who see a lot of this rare disease for a second opinion.

Best of luck to you.

We too had problems with diagnosis if you read any of my posts. I will tell you that Cleveland Clinic only took 2 half days of our time , sent dna to Mayo and came up with a completely different diagnosis rather than cidp. Even before he tested my husband he said due to him looking at the emgs (just 2) he did not feel he had cidp.
As it turned out he has a inherited gene that only comes from a parent(in this case his mother had the gene but was not yet affected by it) . His uncle died from this 20 to 25 years ago. It is called amyloidosis. There are many types of amyloidosis but the inherited type only makes up 5% . Of those 5% there are over 100 mutations. Bill has one of them. So any trials they do are usually done on Primary Amyloidosis (not the inherited type) Not to go any further, my point is please do a 2nd opinion and need be have a dna done as it will tell you what you do have. Before doing this though please ask a genetics doctor about ramifications with employers and insurance companies. We are not aware our insurance co knows it was a dna so we cannot answer for you about that but it has meant a world of good for us to know what he has. There are laws out there to protect you and Pres. Bush did sign one last May for not discrimination on dna tests but it does not become affected until sometime in May 2009. Anyone in more need of help on this subject please let me know and I will direct you to their website.
Joanf

I Googled HNPP & found HNPP.org. There seems to be tons of info.

Here is the link:

[url]http://www.hnpp.org/[/url]

Hope that helps.
Kelly

Chris,
Hang in there. It look like you are headed in the right direction. I sent you an email about the VA. I’ve got an appointment with them on Monday and was looking for some advise.

Hi Chris,

My fiance Ben was also diagnosed with Post GBS last year. In fact, this sentence you wrote describes Ben to a tee!

“One of the strange issues with me is that I am fairly functional. I do not appear to have many physical manifestations. I am okay until I try to do things and then my body literally falls apart and I suffer the consequences.”

Ben enjoys working out and running, but he typically finds that the strenuous exercising leads to more pain and fatigue. His doctors have told him he has an intolerance to exercise, but he doesn’t want to believe it, and he tells himself it’s just a temporary condition. Since I’m healthy, but I also feel a lot of pain when I do long distance running, I tell Ben it’s up to him to decide what he can tolerate and what he can’t. Anyway, I know that wasn’t part of your question, but just wanted to let you know my thoughts on the subject!

Best wishes,

Shannon