[Pyr2]

Hi everyone, I have been living a nerve nightmare for three years and have posted before on this long journey. I definitely have a systemic condition- dr says I have problems in all three nervous systems- and it wasn't until just now that the PN really showed its face but Ive never heard of a PN type being "mixed" with both axonal and demyelinating features. Here it is-

"Distal axonal and demyelinating neuropathy of multifocal pattern. Consistent with cranial neuropathy, and sensory neuronopathy, autonomic neuropathy and underlying postinfectious dysimmune process or connective tissue disease related to lupus, Ehler Danlos, or a neurologic metabolic disturbance."

My symptoms are burning and stinging pains and buzzing all over. No real numbness or tingling. I feel like I am one raw nerve from head to toe and any activity sends me into stinging spasms and stiffness everywhere. Up until 2 months ago I was able to workout now after I feel like a fibromyalgia fest with muscle pain to the touch all over. My absolute WORST symptoms are cranial - my forehead and eyes burn and sting and I even have nystagmus. I also have neuropsychiatric symptoms. Something got to me really good. Ive had a polyclonal IgM in my blood for 18 years at least and all that time I would get the same response "oh thats so nonspecific - means you have an infection or inflammation reaction" and no doctor would treat it or find out what was behind it. Nonspecific - NOT! I also had years of a low postive Ana, anticardiolipin antibodies, and have had Lyme exposure by specific bands. This dr says those features in and of themselves should have prompted immune treatment by someone. Now its systemic.

I have also tested positive by immunofluorescene for neuronal antibodies, yet when they do the western blot, I am not confirmed for each particular antibody. Which is why he wants to do lumbar for autoimmune enchephalitis and paraneoplastic. CT scans were done and no cancer found - PET may be next. Something is definitely wrong CNS related. Its not just the PN. I can feel something is wrong with my brain. Things just got worse after a flu and pneumonavax which I knew better not to take. With an overactive immune system I just cannot take anything else into my system. My head/brain literally feels on fire and infected and I feel like Im about to lose consciousness, getting more and more lethargic by the day. I feel like something is really wrong upstairs.

Doing repeat MRI, SPECT and lumbar puncture in next two weeks. After seeing about 9 different neuros who kept shrugging shoulders for three years I went to dr in NYC at a teaching hospital who was so proactive that after consult he did emg on me right then and there and wanted me to get the mri and spect done at hospital that same day. He says he doesn't like waiting and believes in moving on things right away. I thought I died and went to patient heaven. Unfortunately the hosp imaging dept didn't take my insurance so I have to wait and go elsewhere. I am just thrilled b/c FINALLY I qualify for ivig or plasma or something to take this gosh awful pain away and that finally I am being believed after being prescribed 14 different psych drugs in the past 3 years...... Im just surprised SFN biopsy was negative with all the burning but he is going to repeat. Just scared about the CNS stuff. Can't play around with that. This all started with seizures, bad headaches, cranial nerve issues and muscle twitching all over and involuntary facial movements and some hand movements.

Thanks for listening. HOnestly, I just needed to vent. And Im nervous b/c - why did he get it and they didnt? Should I doubt him? I mean this is still in progress- but thats where he is leaning. He is head of neuro Lyme at teaching hospital I would imagine he knows it when he sees it. I feel I was too complicated for the local neuros. Would love to hear from anyone with something similar - systemic, infectious or autoimmune with possible CNS involvement.
L

[heb1212]

Originally Posted by Pyr2

Hi everyone, I have been living a nerve nightmare for three years and have posted before on this long journey. I definitely have a systemic condition- dr says I have problems in all three nervous systems- and it wasn't until just now that the PN really showed its face but Ive never heard of a PN type being "mixed" with both axonal and demyelinating features. Here it is-

"Distal axonal and demyelinating neuropathy of multifocal pattern. Consistent with cranial neuropathy, and sensory neuronopathy, autonomic neuropathy and underlying postinfectious dysimmune process or connective tissue disease related to lupus, Ehler Danlos, or a neurologic metabolic disturbance."

My symptoms are burning and stinging pains and buzzing all over. No real numbness or tingling. I feel like I am one raw nerve from head to toe and any activity sends me into stinging spasms and stiffness everywhere. Up until 2 months ago I was able to workout now after I feel like a fibromyalgia fest with muscle pain to the touch all over. My absolute WORST symptoms are cranial - my forehead and eyes burn and sting and I even have nystagmus. I also have neuropsychiatric symptoms. Something got to me really good. Ive had a polyclonal IgM in my blood for 18 years at least and all that time I would get the same response "oh thats so nonspecific - means you have an infection or inflammation reaction" and no doctor would treat it or find out what was behind it. Nonspecific - NOT! I also had years of a low postive Ana, anticardiolipin antibodies, and have had Lyme exposure by specific bands. This dr says those features in and of themselves should have prompted immune treatment by someone. Now its systemic.

I have also tested positive by immunofluorescene for neuronal antibodies, yet when they do the western blot, I am not confirmed for each particular antibody. Which is why he wants to do lumbar for autoimmune enchephalitis and paraneoplastic. CT scans were done and no cancer found - PET may be next. Something is definitely wrong CNS related. Its not just the PN. I can feel something is wrong with my brain. Things just got worse after a flu and pneumonavax which I knew better not to take. With an overactive immune system I just cannot take anything else into my system. My head/brain literally feels on fire and infected and I feel like Im about to lose consciousness, getting more and more lethargic by the day. I feel like something is really wrong upstairs.

Doing repeat MRI, SPECT and lumbar puncture in next two weeks. After seeing about 9 different neuros who kept shrugging shoulders for three years I went to dr in NYC at a teaching hospital who was so proactive that after consult he did emg on me right then and there and wanted me to get the mri and spect done at hospital that same day. He says he doesn't like waiting and believes in moving on things right away. I thought I died and went to patient heaven. Unfortunately the hosp imaging dept didn't take my insurance so I have to wait and go elsewhere. I am just thrilled b/c FINALLY I qualify for ivig or plasma or something to take this gosh awful pain away and that finally I am being believed after being prescribed 14 different psych drugs in the past 3 years...... Im just surprised SFN biopsy was negative with all the burning but he is going to repeat. Just scared about the CNS stuff. Can't play around with that. This all started with seizures, bad headaches, cranial nerve issues and muscle twitching all over and involuntary facial movements and some hand movements.

Thanks for listening. HOnestly, I just needed to vent. And Im nervous b/c - why did he get it and they didnt? Should I doubt him? I mean this is still in progress- but thats where he is leaning. He is head of neuro Lyme at teaching hospital I would imagine he knows it when he sees it. I feel I was too complicated for the local neuros. Would love to hear from anyone with something similar - systemic, infectious or autoimmune with possible CNS involvement.
L

"Something got to me really good." I've said that to myself every day for five years. I had a virus called parvo virus b19 that nearly killed me... at least it felt that way. It's not supposed to affect people the way it did me, so it always leaves me wondering what the heck happened to me? I've had many of the same issues you have. I burn, zap, tingle, buzz in every fiber of my being, and like you, the facial symptoms are some of the worst. I've tried to explain to my doctors that even my eyes burn, and they tell me it's allergy season! What you and I experience is true burning, like hot water being poured on my eyeballs. I have pain in every possible place in my body. I twitch, get disoriented and dizzy, and have severe sleep issues. It's not that I can't fall asleep, I just jerk awake repeatedly every single time I start to doze off. I'd never be able to sleep without Ambien and gabapentin. I, too, have positive antiphosphlipid antibodies. My rheum said they can be produced as a result of long-term viral activity, not from an autoimmune condition per se. I've seen every type of doctor possible, even traveled to the Cleveland Clinic, but with no definitve answers. The doctors say post- infectious and central sensitization. My skin biopsy was negative, except for some axonal swelling. I'm truly sorry that you suffer and just wanted to share my story out of sympathy, I guess. I'm so angry that people like you and me suffer and then I hear of research money and hospital programs for conditions that pale in comparison. Having a compassionate doctor is worth its weight in gold. If nothing else, at least you know you have someone who cares. And thank God for this board. It's given me validation and information that has spared me from thinking I'm just going insane.

[Pyr2]

Heb
Thank you SO much for responding. So you have APS and mainly neuro symptoms with no other diagnosed autoimmune disease? Are you ANA positive? Let me ask you this about APS. Did you have any miscarriage, thrombotic events? Also- what do you know about levels? In 2003 time frame I had two miscarriages around 11 weeks and for about 2 years my levels were in the 44-70 range. I had zero neuro symptoms at the time. I was tested a scattering of times in the next 10 years after that and the levels were always lower, 22, 13, 14, and even negative. If you test me today when my worst symptoms are, I am positive but barely. Do actual levels matter as to symptom severity? I have also heard that levels can be in response to a viral infection but Im not sure if that can persist (over 13 years for me) that long????

I am always freaked that this is something new thats developed in the past three years and then I need to ground myself that this has been lurking forever. I guess when antibodies hang around the brain that long its not good. I see all the way back in my medical records to 1997 that I complained of facial burning sensations, eye burning, joint and muscle pain, hot and cold limbs, and had several EMGs. Even though it disappeared for years at a time I have to imagine it was the start of something neuro. Im betting its infectious for me too and that all this autoimmune stuff is from that b/c although I have very low serum complements (c1q, c3,c4) I don't exactly fit the bill for classic lupus symptoms. These multiple cranial neuralgias though are pretty classic autoimmune.

Besides pain meds, are you on anything for the APS or your neuropathy- meaning any therapeautic treatment?

And I know you probably posted it on here before, but catch up with me - I imagine you are female - how old? kids? etc.

NIce to meet you under these horrible conditions~ Try and enjoy your long weekend!
L

[heb1212]

Originally Posted by Pyr2

Heb
Thank you SO much for responding. So you have APS and mainly neuro symptoms with no other diagnosed autoimmune disease? Are you ANA positive? Let me ask you this about APS. Did you have any miscarriage, thrombotic events? Also- what do you know about levels? In 2003 time frame I had two miscarriages around 11 weeks and for about 2 years my levels were in the 44-70 range. I had zero neuro symptoms at the time. I was tested a scattering of times in the next 10 years after that and the levels were always lower, 22, 13, 14, and even negative. If you test me today when my worst symptoms are, I am positive but barely. Do actual levels matter as to symptom severity? I have also heard that levels can be in response to a viral infection but Im not sure if that can persist (over 13 years for me) that long????

I am always freaked that this is something new thats developed in the past three years and then I need to ground myself that this has been lurking forever. I guess when antibodies hang around the brain that long its not good. I see all the way back in my medical records to 1997 that I complained of facial burning sensations, eye burning, joint and muscle pain, hot and cold limbs, and had several EMGs. Even though it disappeared for years at a time I have to imagine it was the start of something neuro. Im betting its infectious for me too and that all this autoimmune stuff is from that b/c although I have very low serum complements (c1q, c3,c4) I don't exactly fit the bill for classic lupus symptoms. These multiple cranial neuralgias though are pretty classic autoimmune.

Besides pain meds, are you on anything for the APS or your neuropathy- meaning any therapeautic treatment?

And I know you probably posted it on here before, but catch up with me - I imagine you are female - how old? kids? etc.

NIce to meet you under these horrible conditions~ Try and enjoy your long weekend!
L

Hi Pyr2... To answer some of your questions, I have extremely high beta 2 glycoprotein, one of the APS antibodies, and only mildly elevated cardiolopin antibodies. The reference range is 0-20 and my blood work has been as high as 117. I've never had a miscarriage but also have a history of severe endometriosis, and I never tried to get pregnant. I have two beautiful girls I adopted. I've never had a stroke or thrombic event. That being said, I feel like a sitting duck with such a high beta 2 number. I have chronic nerve pain that never waxes or wains and terrible joint pain everywhere, especially my feet, hands and knees. That aspect of things is more typical of the parvo virus persistence, especially found in middle aged women. I take 1800 mg of gabapentin and 10 mg of nortriptyline (baby dose) and Ambien to help me sleep through it all at night. The doctors feel I have a fibromyalgia "like" dx but I don't have the typical tender spots, so they have labeled it a central sensitization syndrome. My skin is ultra sensitive, at times so much so that even hair touching my neck hurts. My feet burn like their in acid sometimes. I think the weather and season changes affect things greatly, but I can't pinpoint the exact mechanism of it all. I HATE the vibrating sensation I feel almost non-stop. It's the very first thing I feel upon waking in the morning. I feel like I've been robbed of life by a ghost and hate the word idiopathic. I manage to smile still though