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Living with Polyneuropathy CIDP, GBS, & CMT

Does anyone have cranial nerve pain or symptoms?

#1

Hi there. I was diagnosed with an atypical variant of CIDP. I have a lot of cranial nerve issues and pain - not really deficits or dysfunction, just pain in the cranial nerve distribution like neuralgias. It almost overshadows the body symptoms. I have oligoclonal bands in my spinal fluid which mean central nervous system inflammation/immune activity. I am confused b.c I thought CIDP was mainly peripheral nerves. I am doubting my diagnosis or thinking maybe more than one thing is going on b/c I have not read anyone else with my symptoms. I do also have the all over body burning stinging buzzing twitching sensations.

#2

I had what was believed to be a milder case of GBS. I had identical oligoclonal bands in my CSF and serum. I had a lot of cranial nerve issues too, as well as weakness/numbness in my legs and less with arms. The cranial nerve problems overshadowed my other problems too. The pain and pressure got better for me but after 2 years, I have trouble with balance at times when I overdo things and my eye doesn’t track as well as it did before all of this. I am still getting help with PT for vertigo that I experience at times. I’ve been dizzy for the last 3 days. Hope to be better soon! When did you start having trouble?

#3

Hi Tar. Its been three years of HELL for me. They still suspect an underlying pathogen (I show lyme exposure in blood but evidence in my csf was slight). I started having really bad cranial neuralgia headaches occipital, then bifrontal sinus type headaches, then a month of partial seizures, and then the doozy which was the pulling sensations in my tongue and throat and burning mouth and teething gums feeling and ear pain. Then the full body twitching and the stabbing burning sensations all over. I am starting to feel “off” mentally too (lots of panic) and yes, now dizzy or brain foggy. I am starting ivig (Today!) and so doubting that this is the answer but my dr said it can help brain inflammation from whatever causes as well. No one can figure this out and without causation I remain terrified that there is something worse going on. Honestly, Ive had a full body PET/CT for cancer, SPECT, 5 brain MRIs, two lumbar punctures, etc. The only thing left is a brain biopsy! ( I say that only half jokingly). We are still waiting for the paraneoplastic panel which actually I came back as initiallly positive on the first time and then the western blot was negative. So there is clearly something irritating my brain. Thanks for responding! Did you do IVIG?

#4

OH and 4 EMGS/NCVs and muscle and nerve biopsy too!

#5

there is published medical literature showing a connection between CIDP and cranial nerve damage leading to taste disorders. i can reference you to the article or send you a copy of it.

#6

So sorry you are having so much trouble and for so long. I never did get IVIG or really any other medication treatment. Unfortunately, the physicians that I had were not familiar with this. I have been lucky to have gotten such good PT help. Hope you get help with everything soon. I’m still trying to understand how to move better with this through my life.

#7

Please reference. Thank you so much. Sometimes I feel that this CIDP is secondary and something else is going on.

#8

Journal of Clinical Neuroscience 19 (2012) 604–605

CIDP manifests itself in many ways that are often diagnosed as
self-standing ailments when in fact, the CIDP is the underlying disorder
(i’ve been diagnosed (i consider it as being misdiagnosed) with nearly a
dozen different disparate ailments because the doctors don’t know this
(e.g. Hashimoto’s disease - hypothyroidism, heart failure, BVL, Sjogren’s)

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#9

I am responding because this is the first thread I have seen referencing oligoclonal bands identical in csf and serum. I had test results showing multiple oligoclonal bands in my csf identical to those in my serum. None of my doctors even referenced this finding, and I only found out about it in reviewing my test results myself. I have luckily not experienced many of the cranial symptoms mentioned here. The only issue I have is with my vision and perception being off. Sometimes it is hard to focus on TV or my Nook for too long. It feels like my eyes keep changing focus from near to far, and I get tunnel vision with weird peripheral perception. I have all of the common cidp symptoms in my extremities, but I am now worried that I might develop the incapacitating cranial symptoms you have had to endure. When did you first notice your cranial symptoms compared to the peripheral neuropathy symptoms? My symptoms became really severe in Feb of this year. Sorry if this is off topic, and I am so sorry you both have had to endure these horrible symptoms. I wish you well, and hope you receive some relief from this.

#10

Hi Breakingmirror! Following a Tdap vaccine, I had pain behind my eye and my face felt swollen a couple days before I began having the peripheral ascending numbness/weakness. After this traveled up my spine, then I began having more cranial issues and autonomic problems. I lost my speech, had double vision, difficulty chewing and trouble turning my eye all the while I could barely walk, stand and use my hands. I had so much pressure and pain in my face. It was horrific. I did have the trouble you are talking about with the focus issues, tunnel vision and weird peripheral perception. Are you diagnosed with CIDP? I am currently seeing a PT who specializes in balance disorders as I have had several times where I have relapsed with vertigo. I seem to have some cranial nerve damage that doesn’t bounce back as well when I overdo things. I’m doing exercises to combat this. I am 2 years out so this is one of my lingering issues. You may not have these problems if you didn’t experience the damage when this happened to you. That’s interesting that you had the same oligoclonal bands that I did. An immunologist and neurologist think that I experienced a mild case GBS and believe my spinal tap results indicate this along with my other info. I had read that this result could be a sign of GBS. My ability to focus with my vision changes on a daily basis depending on how much I’ve worked, read, been in the heat, worked out, etc. Does this happen for you? The weird thing is that my eye doctor says my vision is perfect. I’ve never worn prescription glasses. Readers help me for up close but it’s been so frustrating for me-some days I don’t even need them. My PT can see that my eyes don’t track at the same time during these relapses and when this first happened to me and he says that is why my vision is off at times. I really hate it! Makes me feel like something worse is wrong but he says that it is not. It just really affects your vision if the image doesn’t hit just right in the eye. I’m supposedly fixing it with these exercises. I’ll let you know if it does. It did before but I didn’t realize I was supposed to keep it up. I just want to sleep it off but that never works although sleep does help. Does yours ever get worse?

#11

HI everyone. Breakingmirror, I actually have oligoclonal only in my CSF. My experience is still different. I don’t have vision or peripheral issues- I just feel all sorts of weird eye muscle sensations, pulling tugging, pain, strain, tiredness.

It is very hard to say for me when this started. My neuro honestly believes that this has been brewing in me for many many years b/c of a dysimmune post infectious post vaccine or an underlying rheumatologic condition. At one time I had very high anticardiolipin antibodies (autoimmune), now very low. I also had an unexplained bout of burning, tingling, arthralgias, etc. etc. from 1997-1999 that was never explained. Some of that involved my face. I wish I had an answer. I dont buy that CIDP is it for me- too much central nervous system involvement.

#12

Hi tarhealing and all, sorry its been so long since I posted originally. Yes I do have a confirmed diagnosis of cidp as of 6/30 this year and have been dealing with insurance, employment, and dr office issues since then. I received my second ivig treatment last week, with my first being done in the hospital in early may of this year. I do find that tiredness definitely affects my vision problems, and I have been so exhausted since ivig that I will actually fall asleep while trying to reread the same paragraph for the third time because it seems as though the spaces between the written words are actually closer than the words themselves, if that makes any sense. My neurologist is not worried about the oligoclonal bands, or any of my other abnormal blood work. This seems strange because he is responsive to my questions, and doesn’t seem to be in a hurry to just get me out of the office. However, my nerve and muscle biopsy show moderate to severe axonal damage, and he says that this can be repaired by my body once the active attack on my nerves is stopped. He also seems to think that only 3 ivig treatments will produce this. In my research I find that it almost always takes a more extensive treatment plan, and that even then axonal damage may he permanent in most cases. Sorry, I know that particular worry is off tangent, but I have seemingly been through the ringer this past month in trying to cone to terms with the reality of my illness and what I can resonant expect as far as recovery of my previous physical state. Any insight as to any of this would be helpful, and I hope that you all have more good days than bad in the upcoming future. Thanks for your support and time.

#13

I was diagnosed over a year and a half ago, although it affects my arms legs and hands I also have horrible burning on my back and arms. Tramadol is the only thing that helps that part.

#14

Diagnosed with a CIDP that is. I do a SCIG treatment that has slowed things down but it’s still affecting my limbs, hands and feet.

#15

HI have not been on in a while I too have postive lyme. That is where and when I got g.b.s. due to tick bit. And yes I have carnial problems as well the brain fog and the brain haze is all to familar . Here is a Web site a dr. Give to me and it really has helped. Suze Cohen/ lyme I had erlichiosis and now have a form of Lyme. My life has now toke on a new way of living, I avoid any chemicals of any kind , I fell that helps ( chemical very bad for nervous system) my family now eats organic foods I also eat no red meats for some reason red meats and tick bit don’t go well together as I found out. All for now fell free to ask any questions you get better , and take care

#16

First the small electric shocks to the ear and I know what’s coming…teeth ear and head hurt so bad and nothing helps…tramadol doesn’t touch the pain…been dealing with it for the last couple of weeks…mostly left side…worse than any body pain