I want to welcome you to Neruo talk. I am so sorry you are having multipal conditions. This site has alot of good people that may help you sort through the complex issues you have. If at the end of this long road, you still cannot receive a diaganosis, I would consider Mayo clinic. That may be one of the best diagnostic centers in the country. I can tell you from experience, they would get the root of your problems. In the mean time, please ask any of the neurological forums questions and comments. This site will try hard to help you. I do wish you all the best. Again I extend a warm welcome to you, and I will pray you get a resolution to your condition. ginnie

First, yes, a paraneoplastic syndrome with neuropathy features can present as a non-length dependent neuronopathy/ganglionopathy that is primarily sensory and may involve the large fibers, the small fibers, or both. There can be both demyelinating features and axonal damage in these; often, there is axonal damage secondary to ongoing demyelination, even though the demyelinating process is primary.

See:

http://neuromuscular.wustl.edu/nother/paraneo.htm

http://neuromuscular.wustl.edu/antibody/sneuron.html

Second, neuronopathies typically have a considerable proximal component, which is one of the symptomatic clues to investigate them. The true paraneoplastic syndromes, though, generally have very specific autoantibody markers--have you been titred for Hu, Ri, Yo antibodies?

Other people on the site know a lot more about PN than I do, I decided to post because my PN has also been triggered by steroids, in my case an inhaler for COPD. I've become very sensitive to drugs in general as well. My pattern of pain also sounds similar to yours, hand involvement, erythromylegia-type symptoms, etc.

There's a condition called Dyshidrosis Eczema that can cause extremely itchy blisters on hands and feet, I have it on one palm. Not much of an explanation but there are good pictures on Wickipedia of it on fingers and toes. Mine is triggered a lot by stress.

I've had lung cancer but was told it did not progress far enough to have cause paraneoplastic syndrome. I did have some immune problems however, got Klebsiella pneumonia which occurs in people with compromised immunity.
I hope you have something more benign than that.

I don't know if there is any relationship between what I have and what you are experiencing. I suspect I have an autoimmune component, they are beginning to see an autoimmune issue in people who develops COPD in the first place. I got worse on B12 but I got the wrong kind and haven't replaced it yet. I also seem to get some pain when I drink Keffir which has an effect on immunity. I'm sure they checked you for LgA deficiency?

I hope you can find some answers,
Judi

Zygo,

Thanks for sharing your experiences with me. I wouldnt be too sure about what you have been told. Paraneoplastic syndromes can occur at any time, up to 1-2years before there is evidence of a a tumor, and after diagnosis of a tumor.

Wich type of neuropathy do you have?


I had some antibodies testet and they came back fine but there are many more unsual antibodies that were not tested. Moreover, except for SCLC antibodies are often absent in paraneoplastic syndromes. In any case, negative antibody testing does not rule out paraneoplastic neuropathy.

I don't want to lead you down the wrong path if we have had similar symptoms for different reasons, as Mrs. D said, you do have typical symptoms of MG. But as you also said, you may have more than one thing going on and maybe something will help, I've learned a lot here from reading different posts.

I didn't have any noticeable PN symptoms until 1 1/2 to 2 years post surgery. The link that Glentaj provided did say there could occasionally be years between diagnosis and symptoms but I've never been able to find anything that clarified whether it could be that long AFTER the cancer and I didn't think it was likely. I also had septicemia in the hospital and between that and the surgery and prior pneumonia had massive amounts of antibiotics. Also in Glentaj's llink was the statement that calcium channel blockers could intensify that type of PN... I was on them when the PN symptoms began and they were so severe with that med that sometimes I could barely walk in the morning.

I've been Dxed with sensory neuropathy but have not had the sophisticated testing that many here have had, just 2 nerve conduction tests at a rehab clinic. (The PCP I used to have didn't like to refer to neurologists unless it was for stroke, ect., My current one offered a referral but my symptoms are better and I declined for now). I've never had any related bloodwork, I think they feel as long as I'm cancer free and breathing other things are secondary.
I had a very hard time getting them to pay attention to my complaints re: the steroid. I started having what appeared to be some autonomic problems and cut the dose myself in desperation and now they are all telling me to wean off it. I really don't know if I'm have autonomic neuropathy symptoms or adrenal problems, I just improve with less steroid.

Have you tried cooling you feet to help the erythromylagia symptoms? I started sleeping with my feet poked out from under the blankets and going barefoot all the time around the house. I later read on a site for that a lot of people do it, it really helped me.

Do you have any entrapment symptoms in your hands, carpel tunnel, ulnar, etc? Most of mine seem to have been form the steroid making something swell (tendon?) and pinching nerves. I can still feel a little but am much better on a lower dose of med, I couldn't even identify the entrapment symptoms on a higher dose, I just had diffuse pain everywhere and also had difficulty lifting my arms at times. Are you still having those problems off the pred?

I don't know how familiar you are with this site, there is a ton of info about different types of neuropathy. I hope you and/or your doctors can figure some of it out, I know what it feels like to be in pain and not get help.

Judi

Zygo

no, i dont have MG and I dont say this just because several docs excluded it but because i personally feel that this is not the issue. I have been developing a very sensitive gut feelin after all what I have been through and I think I can quite a bit rely on my gut feeling.

Ptosis and thymoma do not have to point towards MG in the absence of any other symptoms and labarotory result .
There is still a question mark to what could possibly have caused my CIPO and there is the possibility that I have a mitochondrial disorder that can also go along with ptosis etc.

i know that cooling an elevating the limbs can decrease the pain with erythromelalgia somewhat but when its really worse that doenst help either. moreover i have very poor microcirculation due to autonomic neuropathy and cooling too much just worsen the vasoconstrtcion.

Sorry, you are complex and as I am not as well versed in the many types of PN as other people here its hard for me to keep things straight.

I do understand trusting your gut feelings and your frustration. I was diagnosed with a variety of disorders over a period of around 3 years, I always knew the steroid was playing a role but could not get anyone to listen.

Judi

:wink:hi ginnie, i'm not sure if i'm doing this right? it's my first time here. i was recently diagnosed with sensory neuropathy in the feet and legs. i have just started on neurotin (Gabapentin) so i haven't noticed any results yet. (3/4) days ago. what worrie's me is i was born with a kidney disease, and very sick growing up, and as i have gotten to the point where i had to go on dyalisis. then thankfully my sister was a perfect match and gave me a kidney!!! it will be 13yrs. this july 9th. i have endured all kinds of things since my transplant, but no complaints here...now i am diagnosed with my neuropathy. i really not happy with my neurologist, and don't know how to go about getting a new one? any info. would be very helpful. thanks,

maureen

Welcome to NeuroTalk:

Some of the transplant drugs may cause neuropathy:

http://informahealthcare.com/doi/abs...2X.2011.573893

This link is for cyclosporine.

Prograf is another.

I am not finding much on Cellcept causing PN however.

Did you discuss this with your transplant doctor?
When people have serious issues like yours, there may not
be an alternate therapy if the PN is due to the drugs.

Have you had your B12 measured? It should be 400 or above in US units. Sometimes low B12 sneaks up on a person, and doctors may not test for it or when they do they use the old test ranges, and miss the real lows. So it would be a good idea to see if your B12 is adequate. When low, neuropathy begins.

Hi maureen,
For specific names, ask people you know/meet/trust, your other doctors and their staffs, your insurance company may have suggestions... and believe it or don't, even Angie's List.

For articles/advice, Google: "finding a good neurologist" (with and without quotes).

Try to find one who specializes in (limits their practice to) the specific condition you're seeing them for (e.g. PN, or even your specific type of PN). Once you've found a few candidates, call their offices to see if they're accepting new patients and/or under what circumstances (sometimes they say no, but will flex for certain cases, doctors' requests, etc.) Depending on your insurance, a referral may or may not be required. If so, ask your PCP for a referral to that neurologist.

HTH,

Doc