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paraneoplastic/SF-non lenght dependent neuropathy/demyelinating neuropathy

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Old 02-19-2012, 08:42 AM   #1
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Default paraneoplastic/SF-non lenght dependent neuropathy/demyelinating neuropathy

Hi all,

I have a long medical history, got diagnosed with chronic intestinal pseudo obstruction at age 22, have had multiple surgeries, have an ileostomy and a bladder catheter etc etc... It would take too long to explain my background in detail.
January 2010, I experiences what I think was the onset of my neuropathy (or better one of my neuropathies, more to come later); I had needles and pins pain(shooting pain in my feet, it was not too bad not bothered me especially as I have already quite a bit pain from my underlying condition. At that point, I was heavily treated with both oral and iv antibiotics due to chronic UTI and recurrent septicemia of the iv line I needed for parenteral nutrition.
However, in retrospective, I really cannot say if the neuropathy was there before but had remained subclinical before it was triggered by the antibiotics.
In any case, I do remember that even before, I had experienced some kind of weakness in the upper arms and legs which made holding something above the head exhausting. I had also noticed that I couldn’t stand up from a squatting position any more.
When I began to experience the shooting pain and pins and needles (without any other paresthesia) in the feet we thought that it was drug induced by the antibiotics. Unfortunately, we couldn’t do much about it as I needed them. However, we switched to antibiotics that are less or not really known for causing neuropathy and I began to have vitamin b12 shots. Under this regime, my pain improved (though I regularly took oral antibiotics).
When the bladder infections got really bad and I had to up the dose of the antibiotics I noticed a pretty immediate worsening of the neuropathy pain. And this reaction was totally independent of the kind of antibiotic I took (including some a. which are not known at all for causing neuropathy)

In summer 2010 I began IvIG therapy as we hoped to boost up my immune system and to limit the recurrent septicemia. Unfortunately, I had severe side effects, including inflammation of the small vessels and aseptic meningitis with the latter lasting almost 8 weeks.
We stopped the IvIG therapy after only three sessions. Ever since then I have been experiencing reactions to almost any drugs I had to take which unfortunately always causes a pretty acute worsening of y neuropathy. These reactions should increase in frequency and severity within the last year leaving me now impossible to take the drugs I’d need. I actually believed the IvIG therapy made my neuropathy worse or triggered the process that had been lurking to show up.

In the beginning of 2011, I decided to try to wean off all drugs/antibiotics to give my immune system and peripheral nerves a rest. The discontinue was not without risks as I still have chronic infections but eventually, I succeeded. In the following two-three weeks, I began to experience dramatic improvement of my neuropathy by taking active vitamin b12/methylcobalamin. After three weeks the pain had disappeared.
Then, I experienced something what I thought was a bug but I remember that I didn’t have typical symptoms of a bug. I did feel sickly but what actually striked me was the intermittent feeling of heaviness I experienced in my limbs. Fortunately after two weeks all my symptoms had gone. But then, I began to have what I consider as pains from impaired circulation; they were throbbing and they were totally different from the nerve pain I had experienced before.
In the beginning they were just annoying but after one week, they increased in severity and after three weeks I could barely stand the pain any more. I began to notice swelling veins in my feet and hands and the pain now expanded from the feet to the hands including all four distal limbs.
During that time, I also had blood drawn and although my veins had never been in a good shape this became nearly impossible due to severe vasospasms. (note: I have always had some kind of vasospasms and impaired circulation probably due to some autonomic dysfunction associated with my CIPO)
After 4 weeks, the nerve pains returned and from then on, increased in severity. I also noticed some kind of strange blisters on my fingertip and toes which were extremely painful and itchy, and after some time, the areas on my toes became numb. From then on, I knew something was really really wrong and that this wasn’t the neuropathy I had dealt with the year before (especially as I had had dramatic remission from it before).
I begged for help but nobody knew what to do and since I am a complex and difficult case anyway they obviously decided to just wait and see. The docs just put aside that I knew that this was something new and different and that it would have severe consequences if left untreated. Finally, my Gi doc who knows me well agreed to give it a trial and prescribed prednisone. Prednisone actually decreased the throbbing pain and made the blisters disappear. However, it made the actual nerve pain worse and I once again noticed that I had an immediate worsening after taking the drug. I was totally confused.
However when I tried to wean off the cortisone the throbbing pain reappeared. Within two months I continuously struggled between lowering the dose of prednisone and somewhat decreasing nerve pain AND upping the dose but increasing nerve pain. Finally, I made a cut though I still experienced the throbbing pain on and off (though not as bad as before). I noticed that creamed that promoted blood circulation also helped somewhat with the pain. Eventually, 6 months after the acute onset of the pain I began to notice that the pain had finally subsided. However, though I had been off all drugs since the prednisone withdrawal my nerve had been steadily deteriorating and spreading further.
At this point I have severe pain in my feet (severe burning pain, with episodes of shooting/pins and needles pain) and all kinds of paresthesia you can imagine (feeling like walking on sand, tingling, pain/dysthesia from touching etc etc). I also have moderate-severe pain in my hands. Oddly, the middle parts of my limbs seem to be pretty spared: the most distal and the most proximal ends of the limbs are most affected (the most distal being the worst). When I am very bad, I also have shooting pains in my shoulders and head, sometimes radiating into my face. I also experience some muscle twitching but that is not on daily basis.
The first neurological consultation was totally useless. Now, I have been in patient in a rheumatological unit where I was sent to the neurologist again and I gained some hard data on my neuropathy from NCS and autonomic testing.
During the whole year I had been consultating numerous docs including rheumatologists which ruled out an autoimmune disease; all my antibodies and rheumatological markers were fine. Nobody knew what was wrong. Druing my in patient stay at the neurological unit which turned out useless I had a PET/CT done. This was the only good thing they did there; unfortunately, they didn’t make anything out of the finding. I got into touch with the radiologist and to make a long story short: he recommended following up the enlarged thymic gland due to the possibility of a tumor and my symptoms being a paranopleastic syndrome. In December 2011 I finally had a chest MRi in one of the top cancer research facilities and the radiologist there confirmed that the thymic gland was indeed too large and that the clinical picture and some of the radiological findings could indicate a paraneoplastic syndrome secondary to a mediastinal tumor. Unfortunately, the radiological findings are not definitive – neither for “only a benign enlarged gland” nor y thmic tumor although there is s slightly increased tendency towards the tumor. In any case, to be sure one has to do surgery and examine the tissue. Now, I am looking for a good surgeon as my case is very complex.
Back to the recent hospital stay at the rheumatological unit: They excluded once again a definite autoimmune disease like lupus or scleroderma and look for various autoimmune markers but everything came back normal. They then sent me to the neurologist and obviously they were much more sophisticated than the neurologist at the former clinic. As I haven’t had a NCS before (well I had one at the other clinic but it was useless due to manipulation) they were just asked to conform the neuropathy by objective means. I didn’t ask them for the possibility of a paraneopasltic neuropathy; I wanted to wait for the test result and their proposals. Moreover, I didn’t pointed out quite well that I think that there are two different processed causing the overall somewhat confusing clinical picture of my neuropathy They did a NCS and autonomic testing and both tests showed some abnormalities: I do not have the report yet, but I already know that the NCS showed slowed nerve conduction study (I think it may be only in the sensory nerves but I am not sure) indicating an ongoing demyelinating neuropathy. The autonomic testing revealed severe autonomic and small fiber neuropathy. They said that they would like to test for Fabry due to the severe small fiber involvement and for monoclonal gammopathy as well. Also, a lumbar puncture is planned because they want to exclude the possibility of CIDP (though the clinical picture does not fit that well for CIDP: I predominantly have sensory and no obvious motor symptoms). But I am the one who knows best that humans as well as conditions don’t always follow the textbook descriptions. All in all, they want t to start a comprehensive search for a possible underlying cause next time.
I am going to be in patient for a full work up sometime in the upcoming weeks. In the meantime, I have thought over the findings and my symptoms and the course the condition took over and over again. I am pretty smart and used to research by my own, this is how I got my diagnosis CIPO: when you have rare diseases much is up to you.
I do think that I CIDP is a possibility but I am not really convinced at the moment that I do have it. I am now even more convinced that there are two different kinds if neuropathies in my case. I think the ongoing demyelinating neuropathy of unknown origin is the neuropathy that started already two years ago (or at least became symptomatic the might had been subclinical before); this would explain the dramatic improvement under methylcobalamin. The drug intolerances and strange reaction/worsening of the neuropathic pain to drugs (when I had never had problems with drugs allergies and intolerances before) could be attributed to a diffuse, unspecified autoimmune process, as part of the paraneoplastic syndrome due to the possible tumor. A paraneoplastic sensory neuropathy would well fit the clinical picture of what I have been experiencing since spring 2011: All in all, there is the
1. Acute onset of what I now consider as acute autonomic neuropathy with subsequent occurrence of small fiber nerve damage and neuropathy
2. The sensory predominance and
3. The absence of autoimmune markers which is nothing uncommon in paraneopalstic syndromes while obviously there is something immunological going on
4. The rapid progression and involvement of unusual sites for a usual neuropathy and I think even CIDP
5. 6 weeks ago: acute onset of what is very likely erythromelalgia, a vasomotor condition which causes swelling, redness and increased temperature and severe burning pain of the feet due to involvement of the small nerve fibers; erythromelalgia is sometimes associated with tumors thus being another paraneoplastic syndrome and is caused by dysregulation of the vessel tone due to autonomic dysfunction
6. development of what probably is autonomic neuropathy of the heart with QT prolongation
7. I haven’t found any info about the possibility of the occurrence of a demyelinating (sensory?) large fiber neuropathy and a small fiber neuropathy which is by definition an axonal neuropathy at the same time. Many neuropathies do involve both large and small fibers but these seem to be axonal neuropathies as the same process damages the axons of the large and small fibers.
8. I have slightly elevated NSE and markedly elevated LDH which can be seen as tumor markers in the absence of a benign disease that would explain the elevated levels
9. The reason why I am thinking that the demyelinating neuropathy came first (thus excluding the possibility of toxic neuropathy as the few toxic neuropathies that are demyelinating are not caused by the drugs I took) is that the "useless" first NCS was indeed abnormal though it was read as normal: I had three measurements in total, two out of three showed slowed nerve conduction, the last one was normal except for decreased amplitude in one hand. But the last value is not valid as they overheated my feet there, whereas the first two measurements correlated well and were done on warm (but not overheated) feet.

Also, as mentioned in my older post, I have mild bilateral ptosis which I didnt have three years ago.
So why do I want an opinion of you at all?
1. Because I don’t want to exclude the possibility of CIDP unless the tests have been negative.
2. There is much knowledge and smart people here who are used to research by their own like me.
3. You may know more about the differential diagnosis of demyelinating neuropathies other than CIDP as you don’t find much info on that in the internet –I’d like to be tested for MNGIE as this could be another differential diagnosis – does anyone has input in thie subject?
4. You may know if a demyelinating neuropathy can be indeed associated with a severe axonal small fiber neuropathy that is unusual in distribution and may rather be a small fiber ganglionopathy/neuronopathy//non-length dependet small fiber neuropathy ? Do you agree that there is at least the possibility of two different neuropathies in my case?
5. is there anyone with a paraneoplastic (non lenght dependent small fiber) neuropathy or sensory ganglionopathy/neuronopathy? Does anyone know for sure if a non lenght dependent small fiber neuropathy can really be a paraneopalstic syndrome?

Sorry for the length of my post but my case is just so complex and writing down helped me to get things in sorted out in my head that is spinning around. BTW, my neurological work up for actual CNS diseases like MS etc have been always normal, also MG was easily ruled out. I would be so glad if you could help me somewhat along…..
I am in so much pain each day and sometimes I can’t hold back the tears and I am certainly nobody who readily cries. I have been used to pain since childhood. But this is just too much especially as I have chronic bowel and bladder pain from CIPO as well, and I cannot take the drugs I’d need for my CIPO or for adequate pain management due to the severe drug intolerances.
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Old 02-19-2012, 09:02 AM   #2
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Welcome to NeuroTalk.

I'd suggest you visit our myasthenia gravis forum anyway.
There are patients there who are seronegative for antibodies.

The ptosis and thymus tumor, are typical signs of it.

From what I have read over there thru the years, MG can be


It is possible also, to have more than one thing going on.
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Old 02-19-2012, 12:12 PM   #3
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Originally Posted by pelztier86 View Post
Hi all,

5. is there anyone with a paraneoplastic (non lenght dependent small fiber) neuropathy or sensory ganglionopathy/neuronopathy? Does anyone know for sure if a non lenght dependent small fiber neuropathy can really be a paraneopalstic syndrome?
Hi! Welcome to the site! You are wonderfully educated and are very impressive!

I have been diagnosed with ganglioneuritis/ganglionopathy for three years now. I was diagnosed by a university doctor who really enjoys helping patients like us and has quite a number. But I have been told that there was no treatment for it and that it traditionally goes away on most patients within six months. I have not been that fortunate and have been only able to treat for the pain caused by it.
There is at least one other person on this site and maybe this person will be able to help you. They are much more educated than I and have gone through more testing than I for it.

Feel free to contact me anytime to talk further and again welcome here - it is a great resource for education and friendship!
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Old 02-19-2012, 12:44 PM   #4
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Default Re: Hi pelztier

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
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Old 02-20-2012, 07:29 AM   #5
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Default A few things--

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.




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?
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Old 02-20-2012, 11:39 AM   #6
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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,
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Old 02-20-2012, 03:28 PM   #7
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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.
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Old 02-21-2012, 11:36 AM   #8
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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.

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Old 02-21-2012, 02:32 PM   #9
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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.
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Old 02-21-2012, 05:46 PM   #10
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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.

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