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CIDP, Lyme, Lupus/Autoimmune Combo? Now have some foot weakness,tremor(new) pain
30 yr male. Nonbacterial prostatitis for 10 years but just started to get treatment in February, 2006 (1000mg/d Aleve + alfuzosin HCl). Prostate got temporarily better. Mid-April (after going back on Aleve for only few days), got acidic muscle burning pains in entire body, liver area pain (sharp jabbing) for 36 hours, regular, quick clubbing-like pain EVERYWHERE from ear lobe to toes,didn't sleep for 4 days in a row and then crashed, this pattern went on for months. Also noticed strange reflex- hit my left forearm muscle, fourth toe on left foot would jerk (still does). Hyperreflexia. Tested for ANA (1:40), STDs, B12, do have high mercury (although many chelation sessions haven't helped), brain MRI, c-spine MRI, normal EMG/NCV, etc Several neurologists seen- all had different opinions (post-viral was just 1...never mind the fact that I kept getting worse each week),few weeks later started getting water dripping sensations down my leg and then it was everywhere,then few weeks later (still having all other symptoms),all joints got stiff,beau's lines..then came the electric shocks (again, everywhere) and bee stings,suicidal. Igenex Lyme results were iffy (although had positive band 58, IND on 39, +41), low cd-57 (36)-tried 5 months of antibiotics (no herxing/improvement even on IV Rocephin and other oral abx). It's 9 mo. later,still get parasthesia, pain, twitch every 10 seconds w/o any breaks. Recent NCV and sweat, heat sensitivity tests now abnormal (have dysautomnia, small fiber+ large fiber neuropathy. IVig next? dx w/CIDP, sister had very high ANA. all pain meds useless
A related discussion, Where is the 30 year old man named burning pains was started.
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms and story that you describe are consistent with the diagnosis of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP). This is a condition where your immune system attacks your peripheral nerves (including the nerves that regulate your autonomic system). This causes weakness, pain, and a wide variety of sensory disturbances (as you have described). The treatment for this condition is less than optimal. Treatment is generally not durable (has to be repeated on a chronic basis) and does not reverse many symptoms, but rather prevents further progression. Some sucess has been found with combining 2 treatments at once. Current treatments include corticosteroids (prednisone), IVIG, Plasma pheresis (also called plasma excahnge), and cyclophosamide. Corticosteroids have the side effects of immune suppression, weight gain, skin problems and osteoporosis that limits their long term use. IVIG is generally well tolerated, but some people can have reactions including fever, shakes, allergic reactions and rarely thrombo-embolic events. Plasma pheresis requires invasive intravenous access and is only available at large centers. Cyclophosamide is often combined with the above therapies, and has the main side effect of immuno-suppression. Despite our best efforts, one third of patients do not respond to treatment. Treatment also includes medications for neuropathic pain including Neurontin, Lyrica, Elavil, Cymbalta, Topamax, Effexor, etc. Given your history of suicidal thoughts, I would also recommend that you see a mental health profesional to help you cope with the stress this has placed on your life.
I hope this has been helpful.
The symptoms and story that you describe are consistent with the diagnosis of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP). This is a condition where your immune system attacks your peripheral nerves (including the nerves that regulate your autonomic system). This causes weakness, pain, and a wide variety of sensory disturbances (as you have described). The treatment for this condition is less than optimal. Treatment is generally not durable (has to be repeated on a chronic basis) and does not reverse many symptoms, but rather prevents further progression. Some sucess has been found with combining 2 treatments at once. Current treatments include corticosteroids (prednisone), IVIG, Plasma pheresis (also called plasma excahnge), and cyclophosamide. Corticosteroids have the side effects of immune suppression, weight gain, skin problems and osteoporosis that limits their long term use. IVIG is generally well tolerated, but some people can have reactions including fever, shakes, allergic reactions and rarely thrombo-embolic events. Plasma pheresis requires invasive intravenous access and is only available at large centers. Cyclophosamide is often combined with the above therapies, and has the main side effect of immuno-suppression. Despite our best efforts, one third of patients do not respond to treatment. Treatment also includes medications for neuropathic pain including Neurontin, Lyrica, Elavil, Cymbalta, Topamax, Effexor, etc. Given your history of suicidal thoughts, I would also recommend that you see a mental health profesional to help you cope with the stress this has placed on your life.
I hope this has been helpful.
Not sure I can remember everything from your post, but I will respond to what I can remember.
First, I'm surprised your sister had an ANA of 1:xxxx and wasn't dxd with lupus! Mine was only 1:160 (mildly positive). I know ANAs can be positive from infections, too, though, (and even some meds), but I thought an ANA that high always was suspicious for lupus. Has your sister been dxd with an autoimmune/connective tissue disease or is she also in the process of being worked up for one?
Why were you seeing a LLMD--were you dxd with Lyme disease? How do you know some of your neuropathy isn't from that? I could see how being infected with Lyme could trigger off an autoiumme disease in one who is susceptible. After all, it's a bacterial infection. I had my symptoms triggered off by both viral and (once) a really bad bacterial infection, and almost certainly I have an autoimmne disease (I've always thought so and so does the neurologist).
I have never heard of beau's lines before and didn't know that they were a manifestation on autoimmune disease. I'll have to look that one up (although I have no horiz. ridges on my nails).
Yes, I am definitely going to have the LP done, probably at Mayo. I need to find out what is causing my auton. neuropathy and if it is associated with any other neurologic disease (MS, CIDP, etc.). The negative blood work I think pretty much ruled out everything else. Hopefully the LP will be elucidating as well as the consult with the auton. dysfunction specialist there. I'm not looking forward to the LP but I had one done 20 years ago when I volunteered for research at NIMH, so I've been through it before. Hopefully this time I won't get the excruciating headache that I had last time. I am glad that the right tests are finally being done, but I will also be glad when they are over and I can finally hopefully get some kind of treatment for whatever I have.
Yes, as you know, MS is a CNS disease, but the peripheral and autonomic nervous systems branch off from the CNS and are connected. I guess that is how the paresthesias, etc., are felt in extremities even in a CNS disease like MS.
I don't you if you have read up on all the variants of CIDP, but there are several, and there is one called MMN (multifocal motor neuropathy-actually not considered a true CIDP, for what that is worth) that has weakness but either no or minimal sensory symptoms involved. Prednisone actually makes the weakness/symptoms worse instead of better as it does in the other CIDPs. But I think you said you had little actual weakness and mostly pain instead, so I don't know if that would even fit.
Well, surprisingly the CCF doctor answered my question today (I thought it would be a while). I'm glad I had already looked up on the internet the different blood tests the neuro at Mayo did on me to find the cause of the auton. dysfunction (including the ones that were part of a paraneoplatic panel) and that I got the results of all that blood work last week (all negative), or I would have been very nervous reading the CCF doctor's response about AAN and associated cancers! But he said exactly what I already told myself-that it was unlikely considering the duration (almost 17 years) of my autonomic symptoms. Well, hopefully he gets to your question soon, too.
Burningpains, you are welcome to email me but it is actually against the forum rules to do that. I have seen other people do it, though, and they don't seem to get kicked off the forum, but I really don't want to take that chance. If you want to take that chance and post your email address, I will be glad to email you, but that is up to you.
First, I'm surprised your sister had an ANA of 1:xxxx and wasn't dxd with lupus! Mine was only 1:160 (mildly positive). I know ANAs can be positive from infections, too, though, (and even some meds), but I thought an ANA that high always was suspicious for lupus. Has your sister been dxd with an autoimmune/connective tissue disease or is she also in the process of being worked up for one?
Why were you seeing a LLMD--were you dxd with Lyme disease? How do you know some of your neuropathy isn't from that? I could see how being infected with Lyme could trigger off an autoiumme disease in one who is susceptible. After all, it's a bacterial infection. I had my symptoms triggered off by both viral and (once) a really bad bacterial infection, and almost certainly I have an autoimmne disease (I've always thought so and so does the neurologist).
I have never heard of beau's lines before and didn't know that they were a manifestation on autoimmune disease. I'll have to look that one up (although I have no horiz. ridges on my nails).
Yes, I am definitely going to have the LP done, probably at Mayo. I need to find out what is causing my auton. neuropathy and if it is associated with any other neurologic disease (MS, CIDP, etc.). The negative blood work I think pretty much ruled out everything else. Hopefully the LP will be elucidating as well as the consult with the auton. dysfunction specialist there. I'm not looking forward to the LP but I had one done 20 years ago when I volunteered for research at NIMH, so I've been through it before. Hopefully this time I won't get the excruciating headache that I had last time. I am glad that the right tests are finally being done, but I will also be glad when they are over and I can finally hopefully get some kind of treatment for whatever I have.
Yes, as you know, MS is a CNS disease, but the peripheral and autonomic nervous systems branch off from the CNS and are connected. I guess that is how the paresthesias, etc., are felt in extremities even in a CNS disease like MS.
I don't you if you have read up on all the variants of CIDP, but there are several, and there is one called MMN (multifocal motor neuropathy-actually not considered a true CIDP, for what that is worth) that has weakness but either no or minimal sensory symptoms involved. Prednisone actually makes the weakness/symptoms worse instead of better as it does in the other CIDPs. But I think you said you had little actual weakness and mostly pain instead, so I don't know if that would even fit.
Well, surprisingly the CCF doctor answered my question today (I thought it would be a while). I'm glad I had already looked up on the internet the different blood tests the neuro at Mayo did on me to find the cause of the auton. dysfunction (including the ones that were part of a paraneoplatic panel) and that I got the results of all that blood work last week (all negative), or I would have been very nervous reading the CCF doctor's response about AAN and associated cancers! But he said exactly what I already told myself-that it was unlikely considering the duration (almost 17 years) of my autonomic symptoms. Well, hopefully he gets to your question soon, too.
Burningpains, you are welcome to email me but it is actually against the forum rules to do that. I have seen other people do it, though, and they don't seem to get kicked off the forum, but I really don't want to take that chance. If you want to take that chance and post your email address, I will be glad to email you, but that is up to you.
Hi Annie,
You are correct about HLA-B27 and ankylosing spondylitis. The interesting (and somewhat scary) thing about HLA-DR4, according to my research, is that one is more susceptible to rheumatoid arthritis, lupus, etc, but that the actual autoimmune disease can manifest as any one, meaning, if I have HLA-DR4 and so does my sister, she could get lupus and I could get arthritis, or lichen planus, or any autoimmune disease. And the fact is that my sister did have an ANA one time that was 1: (4 digit number!), which is ridiculously high. She also has had normal or borderline ANAs, so it makes things even more confusing...gotta love those reliable tests, eh? I think I should take your doctors and you should take mine and then maybe we both get ALL the diagnostic tests we need....sheesh! haha I know my HLA-DR7 can cause "profound neuron loss". My LLMD tested me for HLA genes, because he said that it can help him chart my progress with regard to treatment and may explain why I am not responding. I know on lymenet.org, there have been posts from people in which an entire family has Lyme and the ones who get better don't have any HLA-DR4 (or other bad ones) genes and the ones who still stay sick...have them! So it makes me think that is when an autoimmune process (or the controversial "chronic lyme" theory) comes into play.
The tilt test was ruled negative, but I'm skepical. Yes, I do get dizzy when I stand up, but compared to my other evil, painful, nonstop (every 10 seconds) symptoms, the dizzy part is paradise (believe it or not)!
I'm sorry about your experience with the doc who tried to trip you up! That is so awful. Wish I could give you a hug. I'm really empathetic to other people's experiences now after my own unbelievably insensitive doctor visits. I think I already mentioned that the first two neurologists didn't test me for anything except for an MRI! He came in and said, "Good news! All normal!" I was like, "DUDE! Trust me. I am nowhere close to being normal. I'm suicidal, which is EXTREMELY unlike me." I can deal with bad pain, but this is absolutely torturous! And, yes, I, too, wrote a couple of letters to my previous doctors! My NYC doctors couldn't believe that I was treated so inhumanely and recklessly.
Yes, the skin biopsy was to look at the structure/density/histology of my small fibers, although it seems pretty clear due to the QSART and heat sensitivity tests, that I have small fiber issues. I think it can also detect proteins (like from amyloidosis), which wouldn't be good news if they found that?
RE: stomach or bladder issues -- don't worry -- you can ask me anything! We're in this together! :) I did have prostatitis for (10 years!) and so I have frequency of urination, but that's about it. But I do have cold extremities (temp regulation...maybe Raynaud's?), strange sweating patterns (left wrist sweats for no reason...yeah, I'm a freak), mentioned the getting up/dizzy/fast heartbeat thing...I imagine I have leaky gut or digestive issues, probably not helped at all when I was on ALEVE! I think I have central nervous system issues, too. It gets ridiculous to try to mention everything. Another reason I think I may have something autoimmune going on is because my toe nails have beau's lines= -- horizontal ridges -- and this started shortly after my extreme symptoms started last April. This can be caused by malnutrition or serious disease -- think mine is the latter. All this inflammation in my body is affecting every tissue -- even nail formation. I read online that one doctor told her patient that beuas lines are usually a sign of an autoimmune process.
I'm surprised that I haven't had a lumbar puncture at this point, especially since it helps to confirm CIDP. MAybe I will (like you) be getting one soon -- joy! Now that I have confirmed PERIPHERAL neuropathy and small-and autonomic- neuropathy, I wonder if it makes MS less of a possibility, because isn't that the immune system attacking the myelin in the CENTRAL nervous system (spine and brain?). If that is so, I always wonder why people with MS can have electric shocks and pain in their limbs. Is it the brain just interpreting signals poorly due to miscommunication from the myelin being damanged?
The reason I am skeptical of CIDP is because I have only miminal weakness, am actually HYPERreflexive, and have no sensory LOSS. Perhaps I am an unusual case?
I wish I could give you my email, but I'm not sure we are allowed to post personal information?
You are correct about HLA-B27 and ankylosing spondylitis. The interesting (and somewhat scary) thing about HLA-DR4, according to my research, is that one is more susceptible to rheumatoid arthritis, lupus, etc, but that the actual autoimmune disease can manifest as any one, meaning, if I have HLA-DR4 and so does my sister, she could get lupus and I could get arthritis, or lichen planus, or any autoimmune disease. And the fact is that my sister did have an ANA one time that was 1: (4 digit number!), which is ridiculously high. She also has had normal or borderline ANAs, so it makes things even more confusing...gotta love those reliable tests, eh? I think I should take your doctors and you should take mine and then maybe we both get ALL the diagnostic tests we need....sheesh! haha I know my HLA-DR7 can cause "profound neuron loss". My LLMD tested me for HLA genes, because he said that it can help him chart my progress with regard to treatment and may explain why I am not responding. I know on lymenet.org, there have been posts from people in which an entire family has Lyme and the ones who get better don't have any HLA-DR4 (or other bad ones) genes and the ones who still stay sick...have them! So it makes me think that is when an autoimmune process (or the controversial "chronic lyme" theory) comes into play.
The tilt test was ruled negative, but I'm skepical. Yes, I do get dizzy when I stand up, but compared to my other evil, painful, nonstop (every 10 seconds) symptoms, the dizzy part is paradise (believe it or not)!
I'm sorry about your experience with the doc who tried to trip you up! That is so awful. Wish I could give you a hug. I'm really empathetic to other people's experiences now after my own unbelievably insensitive doctor visits. I think I already mentioned that the first two neurologists didn't test me for anything except for an MRI! He came in and said, "Good news! All normal!" I was like, "DUDE! Trust me. I am nowhere close to being normal. I'm suicidal, which is EXTREMELY unlike me." I can deal with bad pain, but this is absolutely torturous! And, yes, I, too, wrote a couple of letters to my previous doctors! My NYC doctors couldn't believe that I was treated so inhumanely and recklessly.
Yes, the skin biopsy was to look at the structure/density/histology of my small fibers, although it seems pretty clear due to the QSART and heat sensitivity tests, that I have small fiber issues. I think it can also detect proteins (like from amyloidosis), which wouldn't be good news if they found that?
RE: stomach or bladder issues -- don't worry -- you can ask me anything! We're in this together! :) I did have prostatitis for (10 years!) and so I have frequency of urination, but that's about it. But I do have cold extremities (temp regulation...maybe Raynaud's?), strange sweating patterns (left wrist sweats for no reason...yeah, I'm a freak), mentioned the getting up/dizzy/fast heartbeat thing...I imagine I have leaky gut or digestive issues, probably not helped at all when I was on ALEVE! I think I have central nervous system issues, too. It gets ridiculous to try to mention everything. Another reason I think I may have something autoimmune going on is because my toe nails have beau's lines= -- horizontal ridges -- and this started shortly after my extreme symptoms started last April. This can be caused by malnutrition or serious disease -- think mine is the latter. All this inflammation in my body is affecting every tissue -- even nail formation. I read online that one doctor told her patient that beuas lines are usually a sign of an autoimmune process.
I'm surprised that I haven't had a lumbar puncture at this point, especially since it helps to confirm CIDP. MAybe I will (like you) be getting one soon -- joy! Now that I have confirmed PERIPHERAL neuropathy and small-and autonomic- neuropathy, I wonder if it makes MS less of a possibility, because isn't that the immune system attacking the myelin in the CENTRAL nervous system (spine and brain?). If that is so, I always wonder why people with MS can have electric shocks and pain in their limbs. Is it the brain just interpreting signals poorly due to miscommunication from the myelin being damanged?
The reason I am skeptical of CIDP is because I have only miminal weakness, am actually HYPERreflexive, and have no sensory LOSS. Perhaps I am an unusual case?
I wish I could give you my email, but I'm not sure we are allowed to post personal information?
Hi Annie62,
Thanks for your response. Were you ever tested for HLA-DR(n)?...that might help to reveal a susceptibility to an autoimmune process.
OK, regarding the tilt table, yes, it came out clean. However, they record a baseline heartbeat first and compare it to the new heartbeat. My heart rate was already around 100 beats per minute and probably only went up to 125 or so when they tilted me. I think it needs to go up over 30 bpm in order to fail that test, but I'm not sure. It's hard to detect such a difference when the rate is already so high.
For the sweating test, I only had the wrap around my left leg, although I had little metal "tags" put on my back, and I forget if they measured sweat volume? I don't remember my right side being tested, but this was done through the prestigious NYU neurologist's facility, and he said the testing is the exactly the same that is done at Mayo.
I looked up MG, and it doesn't sound like me. My concern is more with my abnormal nerves, less with the muscles (the needle part of the EMG showed normal results, as opposed to the nerve conduction).
I do have more weakness on my left side, but compared to all of my symptoms, the weakness is quite minimal. Maybe that will progress (hope not), but really is barely noticeable at this point. I signed up on this forum 9 months ago and just now was able to ask my question. At that time, burning muscle pains were my main problem, although, now, that is the only symptom that is getting better. Other symptoms have come and are more evil, so I almost miss the horrible burning pains!
I'm a little surprised that you haven't had an EMG in 2 years. My first EMG was 6 months ago and was completely clean! Fast forward to just a few weeks ago, and I have major problems with my nerve conduction. That was just in 6 months! I know it's painful, but your nerves/muscles may have changed too. I know several people who had clean EMGs and then tested only 4 months later and everything had changed. Perhaps nothing will have changed and your problems are more from the small fibers that can't be detected. Did you have a skin biopsy?
I'm glad the doctors finally believe you. Yes, it's horrible when they just think you are a hypochondriac. I was told that because I had notes with me that I was too organized and a type-A personality, which actually couldn't be further from the truth! I'm sort of the opposite of an alarmist and tend to, stupidly, IGNORE strange symptoms. Yet, I was still being told I was a hypochondriac, which I think stems from frustration and intellectual laziness on the doctor's part when s/he can't figure out what is wrong. I'm not at all a crier, but, boy, I sure left in tears a few times after the doctors told me something like "post-viral" -- meaning we can't do anything for you. Every doctor have a different diagnosis. The first two neurologists actually didn't test me for ANYTHING except make me do a brain MRI! Fortunately, I now have doctors who are trying to get to the bottom of all this and who actually listen to me, which is very refreshing. That's why I am almost happy with all my severely abnormal nerve tests. They now know I have these neuropathies. Believe me, if I could ignore these symptoms, I would!!
Thanks for the info. :)
Thanks for your response. Were you ever tested for HLA-DR(n)?...that might help to reveal a susceptibility to an autoimmune process.
OK, regarding the tilt table, yes, it came out clean. However, they record a baseline heartbeat first and compare it to the new heartbeat. My heart rate was already around 100 beats per minute and probably only went up to 125 or so when they tilted me. I think it needs to go up over 30 bpm in order to fail that test, but I'm not sure. It's hard to detect such a difference when the rate is already so high.
For the sweating test, I only had the wrap around my left leg, although I had little metal "tags" put on my back, and I forget if they measured sweat volume? I don't remember my right side being tested, but this was done through the prestigious NYU neurologist's facility, and he said the testing is the exactly the same that is done at Mayo.
I looked up MG, and it doesn't sound like me. My concern is more with my abnormal nerves, less with the muscles (the needle part of the EMG showed normal results, as opposed to the nerve conduction).
I do have more weakness on my left side, but compared to all of my symptoms, the weakness is quite minimal. Maybe that will progress (hope not), but really is barely noticeable at this point. I signed up on this forum 9 months ago and just now was able to ask my question. At that time, burning muscle pains were my main problem, although, now, that is the only symptom that is getting better. Other symptoms have come and are more evil, so I almost miss the horrible burning pains!
I'm a little surprised that you haven't had an EMG in 2 years. My first EMG was 6 months ago and was completely clean! Fast forward to just a few weeks ago, and I have major problems with my nerve conduction. That was just in 6 months! I know it's painful, but your nerves/muscles may have changed too. I know several people who had clean EMGs and then tested only 4 months later and everything had changed. Perhaps nothing will have changed and your problems are more from the small fibers that can't be detected. Did you have a skin biopsy?
I'm glad the doctors finally believe you. Yes, it's horrible when they just think you are a hypochondriac. I was told that because I had notes with me that I was too organized and a type-A personality, which actually couldn't be further from the truth! I'm sort of the opposite of an alarmist and tend to, stupidly, IGNORE strange symptoms. Yet, I was still being told I was a hypochondriac, which I think stems from frustration and intellectual laziness on the doctor's part when s/he can't figure out what is wrong. I'm not at all a crier, but, boy, I sure left in tears a few times after the doctors told me something like "post-viral" -- meaning we can't do anything for you. Every doctor have a different diagnosis. The first two neurologists actually didn't test me for ANYTHING except make me do a brain MRI! Fortunately, I now have doctors who are trying to get to the bottom of all this and who actually listen to me, which is very refreshing. That's why I am almost happy with all my severely abnormal nerve tests. They now know I have these neuropathies. Believe me, if I could ignore these symptoms, I would!!
Thanks for the info. :)
Hi burningpains,
No, I never got tested for any of the HLAs. I didn't even know doctors tested for those other than for research purposes. It's interesting that you mentioned it, though. I have read some on the different ones being associated with different autoimm. diseases because autoimm. diseases run in my mom's family (MS, ankyl. spondylitis, Meniere's). Do they run in yours as well? I think it is HLA-B27 that is highly associated with ankylosing spondylitis (which my uncle has), and there are a couple, I think that are somewhat associated with MS (DR3?)--can't remember which ones right now. I would be very curious to know if I tested positive for any of them but I doubt any of the doctors would think it necessary. Why did they decide to test you for the antigens? Even if positive, findings would be pretty nonspecific, right? Do you know what autoimmune diseases are associated with the ones you tested positive for?
As far as your tilt test, it sounds like it was borderline and not really negative. Didn't you say you had POTS? That must not be fun to deal with dizziness/low BP after standing up each time.
I haven't had an EMG in 2 1/2 years. It doesn't surprise me that no doctor repeated it; the last neuro I saw (who did the EMG) thought my symptoms were a result of my "OCD personality"-that's what he wrote in my note. When he came into the office (he must have heard I was a nutcase with a long history of "imaginary" somatic complaints beforehand) he decided to see if he could trip me up on my account of my symptoms (he changed the sides of the body-L v. R., dates I had written on the patient questionaire I filled out re: when symptoms started, and implied in my note afterward that *I* switched the sides of my body (in other words, I was confused because I was making it all up). No such thing ever happened. First of all I have a very good memory and second of all it's my life/history and I know it like the back of my hand cause I have lived it. I have already typed up a four page letter that I am going to send to the SOB as soon as I find out for sure what my dx is (sorry if I sound angry, but I am :). I got his note on my before going up to Mayo last month and I almost had an apoplectic seizure after I read it.
No, I've never had a skin biopsy. Why did they do that on you? For small-fiber neuropathy?
I just got a question in to the doctor, too, about three weeks ago (it only took me four months, so I guess i was lucky). I always read the responses to everyone, although it looks like it is going to be a while before he/she gets to them all. I really think they have a bigger window for people who live near the Cleveland Clinic, because a couple of the people who seem to post questions often (some over-posted) I noticed mentioned they either lived in Ohio or PA. If that is the case I don't blame them, though, (potential new patients for them) as they are providing this service for free.
I know what you mean about ignoring symptoms/physical complaints. I probably do have type A personality, but when it came to my body/health I never went to doctors before and paid little attention to my health (smoked, didn't eat healthy), but since I got sick that has changed. When I got the Horner's in early '90 I didn't see a doctor for more than 1 1/2 years about it. I stopped sweating on the left side of my body, my pupil constricted and I had ptosis on the same side. I actually thought maybe I had a brain tumor, but I still didn't go to a doctor, but I didn't have any insurance at the time and I also felt fine. I didn't know anything about medical stuff then. But even when I was referred to a neuro he never worked me up for it (other than a CXR) and then later claimed to have lost my records when I requested them in '99. You mentoined being "glad" when abnormalities appeared on your nerve conductions tests. I understand that completely; that is how I felt when I read that my QSART showed hypohidrosis on the left side, because it "proves" my claim that I had a prior Horner's syndrome. None of the doctors (other than the first neuro who lied and said he couldn't find my records) even believed I ever had it in the past.
I agree that some of them are intellectually lazy and write you off if they are clueless and the tests aren't yielding anything, but most of my doctors were pretty smart--they just could not bring themselves to believe my symptoms had an organnic basis. I dealt more with biased doctors than intellectually lazy doctors. My current PCP is a very good diagnostician (only reason I stuck with him), but he became convinced that it was psychosomatic too. Well, now the bast***s know they were wrong.
One more thing, since you have autonomic neuropathy, do you have any stomach or bladder problems (sorry if I am getting too personal). Gastroparesis (slowed stomach emptying)-mine was severe on scan--is a hallmark of autonomic failure and so is urinary retention. I wondered if you had either. But I was tested for the urinary retention at Mayo and the test was normal (which I knew it would be since I have mild urge incontinence now. From everything I can find on this, retention (inability to pee) is a hallmark of autonomic failure, not urge incontinence. I think maybe that (and a few other things as well) is one of the reasons they are reconsidering MS as a dx for me. The neuro mentioned they needed to still rule out MS and suggested I return to Mayo for a lumbar puncture, but she told me when I was up there that my presentation (Horner's) would be very atypical for MS.
Sorry this is so long. There aren't many people on here who have autonomic neuropathy (I just found one other poster on the patient-patient board), so I am trying to learn as much as I can and compare symptoms. Thanks for responding.
No, I never got tested for any of the HLAs. I didn't even know doctors tested for those other than for research purposes. It's interesting that you mentioned it, though. I have read some on the different ones being associated with different autoimm. diseases because autoimm. diseases run in my mom's family (MS, ankyl. spondylitis, Meniere's). Do they run in yours as well? I think it is HLA-B27 that is highly associated with ankylosing spondylitis (which my uncle has), and there are a couple, I think that are somewhat associated with MS (DR3?)--can't remember which ones right now. I would be very curious to know if I tested positive for any of them but I doubt any of the doctors would think it necessary. Why did they decide to test you for the antigens? Even if positive, findings would be pretty nonspecific, right? Do you know what autoimmune diseases are associated with the ones you tested positive for?
As far as your tilt test, it sounds like it was borderline and not really negative. Didn't you say you had POTS? That must not be fun to deal with dizziness/low BP after standing up each time.
I haven't had an EMG in 2 1/2 years. It doesn't surprise me that no doctor repeated it; the last neuro I saw (who did the EMG) thought my symptoms were a result of my "OCD personality"-that's what he wrote in my note. When he came into the office (he must have heard I was a nutcase with a long history of "imaginary" somatic complaints beforehand) he decided to see if he could trip me up on my account of my symptoms (he changed the sides of the body-L v. R., dates I had written on the patient questionaire I filled out re: when symptoms started, and implied in my note afterward that *I* switched the sides of my body (in other words, I was confused because I was making it all up). No such thing ever happened. First of all I have a very good memory and second of all it's my life/history and I know it like the back of my hand cause I have lived it. I have already typed up a four page letter that I am going to send to the SOB as soon as I find out for sure what my dx is (sorry if I sound angry, but I am :). I got his note on my before going up to Mayo last month and I almost had an apoplectic seizure after I read it.
No, I've never had a skin biopsy. Why did they do that on you? For small-fiber neuropathy?
I just got a question in to the doctor, too, about three weeks ago (it only took me four months, so I guess i was lucky). I always read the responses to everyone, although it looks like it is going to be a while before he/she gets to them all. I really think they have a bigger window for people who live near the Cleveland Clinic, because a couple of the people who seem to post questions often (some over-posted) I noticed mentioned they either lived in Ohio or PA. If that is the case I don't blame them, though, (potential new patients for them) as they are providing this service for free.
I know what you mean about ignoring symptoms/physical complaints. I probably do have type A personality, but when it came to my body/health I never went to doctors before and paid little attention to my health (smoked, didn't eat healthy), but since I got sick that has changed. When I got the Horner's in early '90 I didn't see a doctor for more than 1 1/2 years about it. I stopped sweating on the left side of my body, my pupil constricted and I had ptosis on the same side. I actually thought maybe I had a brain tumor, but I still didn't go to a doctor, but I didn't have any insurance at the time and I also felt fine. I didn't know anything about medical stuff then. But even when I was referred to a neuro he never worked me up for it (other than a CXR) and then later claimed to have lost my records when I requested them in '99. You mentoined being "glad" when abnormalities appeared on your nerve conductions tests. I understand that completely; that is how I felt when I read that my QSART showed hypohidrosis on the left side, because it "proves" my claim that I had a prior Horner's syndrome. None of the doctors (other than the first neuro who lied and said he couldn't find my records) even believed I ever had it in the past.
I agree that some of them are intellectually lazy and write you off if they are clueless and the tests aren't yielding anything, but most of my doctors were pretty smart--they just could not bring themselves to believe my symptoms had an organnic basis. I dealt more with biased doctors than intellectually lazy doctors. My current PCP is a very good diagnostician (only reason I stuck with him), but he became convinced that it was psychosomatic too. Well, now the bast***s know they were wrong.
One more thing, since you have autonomic neuropathy, do you have any stomach or bladder problems (sorry if I am getting too personal). Gastroparesis (slowed stomach emptying)-mine was severe on scan--is a hallmark of autonomic failure and so is urinary retention. I wondered if you had either. But I was tested for the urinary retention at Mayo and the test was normal (which I knew it would be since I have mild urge incontinence now. From everything I can find on this, retention (inability to pee) is a hallmark of autonomic failure, not urge incontinence. I think maybe that (and a few other things as well) is one of the reasons they are reconsidering MS as a dx for me. The neuro mentioned they needed to still rule out MS and suggested I return to Mayo for a lumbar puncture, but she told me when I was up there that my presentation (Horner's) would be very atypical for MS.
Sorry this is so long. There aren't many people on here who have autonomic neuropathy (I just found one other poster on the patient-patient board), so I am trying to learn as much as I can and compare symptoms. Thanks for responding.
Hi, Annie62. I'm sorry for what you are going through too. :( No, they haven't really figured out anything at this point. Every neurologist has something different to say, but I, too, had an abnormal QSART -- I apparently didn't sweat at all! I'm not familiar with LEMS, MG, nAchR antibodies. I didn't know they could find antibodies for amyloidosis-- I thought this was found through a skin biopsy. You taught me something! It's a bummer that I have to go to neurologist to neurologist to get a few tests here, a few tests there. I wish somebody would just test me for everything under the sun in one place!
Anyway, I haven't definitely been diagnoses with CIDP -- I am actually hyperreflexive and only have minor weakness, but I had slowing in my NCV, so they know there is peripheral neuropathy (diabetes, B12, other usual suspects have been ruled out), so they think it is being caused by inflammation -- either from Lyme or autoimmune -- and at this point it is CHRONIC, so they can technically call it chronic inflammatory demyelinating (due to the NCV) polyneuropathy (because it is everywhere) without it following the standard CIDP pattern. It could be a variant of it. I think the autonomic dysfunction could be a separate issue, but I think the small fiber PAIN could stem from an attack from my immune system. Yes, I do have other autonomic issues -- POTS, fast heartbeat, cold extremeties, however, in the autonomic lab, sweating and heat sensitivity were my only abnormal tests. May I ask what kind of parasthesias you have? Do you have the creepy water sensations? How was your most recent EMG/NCV? Do you have large-fiber peripheral neuropathy? Thank you and thanks to alchris for writing!
Anyway, I haven't definitely been diagnoses with CIDP -- I am actually hyperreflexive and only have minor weakness, but I had slowing in my NCV, so they know there is peripheral neuropathy (diabetes, B12, other usual suspects have been ruled out), so they think it is being caused by inflammation -- either from Lyme or autoimmune -- and at this point it is CHRONIC, so they can technically call it chronic inflammatory demyelinating (due to the NCV) polyneuropathy (because it is everywhere) without it following the standard CIDP pattern. It could be a variant of it. I think the autonomic dysfunction could be a separate issue, but I think the small fiber PAIN could stem from an attack from my immune system. Yes, I do have other autonomic issues -- POTS, fast heartbeat, cold extremeties, however, in the autonomic lab, sweating and heat sensitivity were my only abnormal tests. May I ask what kind of parasthesias you have? Do you have the creepy water sensations? How was your most recent EMG/NCV? Do you have large-fiber peripheral neuropathy? Thank you and thanks to alchris for writing!
Burningpains,
Regarding amyloidosis, I just meant i had blood work for it; no, there isn't an antibody since it isn't considered an autoimmune disease (as far as I am aware, anyway). Last month I had every blood test under the sun to find the cause of my auton. neuropathy, but it was all negative. The neuro at Mayo says she still thinks it's autoimm. in nature. LEMS (Lambert Eaton syndrome), MG (myasthenia gravis) sometimes have autonomic neuropathy associated with them (that's why I was tested for them). That's why I wondered if the cause of your autonom. neuropathy had been identified yet. It sounds like maybe you have only been tested for the more common causes (diabetes, etc.)? Maybe you should consider a more thorough work-up (blood work) to see if anything comes to light as a cause.
You said you had POTS. I'm surprised the tilt table test didn't pick it up (if you had that done in the auton. lab). My tilt table was normal too, but I really don't have any BP issues. I don't have a rapid pulse like you, I have just the opposite now-mine is always in the 50s and sometimes goes into the 40s. But my QSART was abnormal as yours was. I wasn't aware that I still had any discrepancy in sweating pattern, (right side of my body vs. left), but apparently I still have some hypohidrosis that I am not even aware of on the left side of my body. All the way back in '90-'92 (very first symptom) I had a left sided Horner's syndrome where I stopped sweating on the left side of my body. It was bizarre (and apparently the precursor of things to come). So it looks like there is still some residual hypohidrosis that I wasn't even aware of. I was very surprised the test picked it up after 14 years. Is your anhidrosis only on one side or bilateral or patchy or what?
As far as paresthesias, i have minimal. You mentioned creepy water sensations (and I assume you have burning pains, too, from your name). I sometimes feel a mild burning in my toes, but mainly I have mild intermittent tingling and a heavy feeling in my left leg and arm-like the blood is being cut off. If I do have CIDP I have a variant, as my paresthesias (as well as mild muscle weakness) are only on the left side, not bilateral. I had an EMG done two years ago and it was normal--unlike yours.
You are right about the process being piecemeal, going from doctor to doctor, a test here and there. I've spent 13 years (since '94) trying to get a dx, saw 5 neuros who all thought my symptoms were in my head. My PCP came to believe the same thing, as none of the tests were showing anything and the neuros all told him they thought it was psychosomatic. It wasn't until after the recent dx of gastroparesis that I was deemed "credible." I actually understand the frustration and anger of one of the above posters (although I thought what he/she said in the post was very inappropriate). Unless someone has had their veracity, credibility and sanity questioned and attacked over and over again (in addition to watching their body deteriorate and not being able to do anything about it), then they can't possibly know what that feels like. Anyway, the dx of gastroparesis led to my being referred to Mayo. Neuro there told me she thought I might have autoimmune autonomic neuropathy with possible CIDP component (before she did the tests). She says she still thinks it is autoimm. in nature, but wants me to return for an LP to definitively rule out MS.
They do everything under one place at Mayo and the Cleveland Clinic, so if you are able and it's at all practical, you might want to consider one of them. You have the consult with the neuro, he/she decides what tests need to be done and they give you a schedule to follow for the days you are there. The only thing is (depending on the tests) they don't have the results when you leave and you either have to go all the way back there for follow-up or wait six weeks like I did to get the results/diagnosis in the mail-and then possibly have to return anyway for further testing if they can't figure it out. It was stressful having to go out of town and all that entailed, but I definitely don't regret going.
Regarding amyloidosis, I just meant i had blood work for it; no, there isn't an antibody since it isn't considered an autoimmune disease (as far as I am aware, anyway). Last month I had every blood test under the sun to find the cause of my auton. neuropathy, but it was all negative. The neuro at Mayo says she still thinks it's autoimm. in nature. LEMS (Lambert Eaton syndrome), MG (myasthenia gravis) sometimes have autonomic neuropathy associated with them (that's why I was tested for them). That's why I wondered if the cause of your autonom. neuropathy had been identified yet. It sounds like maybe you have only been tested for the more common causes (diabetes, etc.)? Maybe you should consider a more thorough work-up (blood work) to see if anything comes to light as a cause.
You said you had POTS. I'm surprised the tilt table test didn't pick it up (if you had that done in the auton. lab). My tilt table was normal too, but I really don't have any BP issues. I don't have a rapid pulse like you, I have just the opposite now-mine is always in the 50s and sometimes goes into the 40s. But my QSART was abnormal as yours was. I wasn't aware that I still had any discrepancy in sweating pattern, (right side of my body vs. left), but apparently I still have some hypohidrosis that I am not even aware of on the left side of my body. All the way back in '90-'92 (very first symptom) I had a left sided Horner's syndrome where I stopped sweating on the left side of my body. It was bizarre (and apparently the precursor of things to come). So it looks like there is still some residual hypohidrosis that I wasn't even aware of. I was very surprised the test picked it up after 14 years. Is your anhidrosis only on one side or bilateral or patchy or what?
As far as paresthesias, i have minimal. You mentioned creepy water sensations (and I assume you have burning pains, too, from your name). I sometimes feel a mild burning in my toes, but mainly I have mild intermittent tingling and a heavy feeling in my left leg and arm-like the blood is being cut off. If I do have CIDP I have a variant, as my paresthesias (as well as mild muscle weakness) are only on the left side, not bilateral. I had an EMG done two years ago and it was normal--unlike yours.
You are right about the process being piecemeal, going from doctor to doctor, a test here and there. I've spent 13 years (since '94) trying to get a dx, saw 5 neuros who all thought my symptoms were in my head. My PCP came to believe the same thing, as none of the tests were showing anything and the neuros all told him they thought it was psychosomatic. It wasn't until after the recent dx of gastroparesis that I was deemed "credible." I actually understand the frustration and anger of one of the above posters (although I thought what he/she said in the post was very inappropriate). Unless someone has had their veracity, credibility and sanity questioned and attacked over and over again (in addition to watching their body deteriorate and not being able to do anything about it), then they can't possibly know what that feels like. Anyway, the dx of gastroparesis led to my being referred to Mayo. Neuro there told me she thought I might have autoimmune autonomic neuropathy with possible CIDP component (before she did the tests). She says she still thinks it is autoimm. in nature, but wants me to return for an LP to definitively rule out MS.
They do everything under one place at Mayo and the Cleveland Clinic, so if you are able and it's at all practical, you might want to consider one of them. You have the consult with the neuro, he/she decides what tests need to be done and they give you a schedule to follow for the days you are there. The only thing is (depending on the tests) they don't have the results when you leave and you either have to go all the way back there for follow-up or wait six weeks like I did to get the results/diagnosis in the mail-and then possibly have to return anyway for further testing if they can't figure it out. It was stressful having to go out of town and all that entailed, but I definitely don't regret going.
Burningpains,
I have some similar issues. Have they figured out what the cause of your dysautonomia is? Has any of the blood work you had pointed to a cause? Also, have you definitely been dxd with CIDP (and how was it dxd?) and do they think the autonomic dysfunction is part of your CIDP or a separate issue? I have read that autonom. neuropathy is rarely seen with CIDP, but there are people who do have both--have been reading extensively on it. Also, do you have any autonomic neuropathy (BP issues, etc.) or just the abnormal sweating patterns?
I was just dxd with autonomic neuropathy (probably autoimmune in nature), but I just found out yesterday that none of my blood work pointed to a cause (I had blood work done on everything-a paraneoplastic panel, antibodies for LEMS, MG, nAchR antibody, amyloidosis, Stiff man's syndrome, diabetes, etc.). My QSART was the only abnormal test in the autonomic lab (showed hypohydrisos of leg), but I have severe gastroparesis as well and had a past Horner's syndrome-probably why the QSART was abnormal. I was also told last month at Mayo that I might have some CIDP along with the autonomic neuropathy, as I also have non-autonomic symptoms-weakness, paresthesias, etc, as you do. I don't have a definitive dx yet, though, as to whether this is a wholly PN or a CNS thing causing the dysautonomia, and plan to return to Mayo for further work-up (including LP for MS), but I was curious what they think the cause of your auton. dysfunction is and if they think it is part of your CIDP or a distinct phenomenon.
I have some similar issues. Have they figured out what the cause of your dysautonomia is? Has any of the blood work you had pointed to a cause? Also, have you definitely been dxd with CIDP (and how was it dxd?) and do they think the autonomic dysfunction is part of your CIDP or a separate issue? I have read that autonom. neuropathy is rarely seen with CIDP, but there are people who do have both--have been reading extensively on it. Also, do you have any autonomic neuropathy (BP issues, etc.) or just the abnormal sweating patterns?
I was just dxd with autonomic neuropathy (probably autoimmune in nature), but I just found out yesterday that none of my blood work pointed to a cause (I had blood work done on everything-a paraneoplastic panel, antibodies for LEMS, MG, nAchR antibody, amyloidosis, Stiff man's syndrome, diabetes, etc.). My QSART was the only abnormal test in the autonomic lab (showed hypohydrisos of leg), but I have severe gastroparesis as well and had a past Horner's syndrome-probably why the QSART was abnormal. I was also told last month at Mayo that I might have some CIDP along with the autonomic neuropathy, as I also have non-autonomic symptoms-weakness, paresthesias, etc, as you do. I don't have a definitive dx yet, though, as to whether this is a wholly PN or a CNS thing causing the dysautonomia, and plan to return to Mayo for further work-up (including LP for MS), but I was curious what they think the cause of your auton. dysfunction is and if they think it is part of your CIDP or a distinct phenomenon.
Forgot to mention that I have just been checked for paraneoplastic syndrome, and the following: quantitative immunglobulins, immunfixation electrophoresis, cryoglobulins, C1q binding assay, SSA, SSB, ANA, ANCA, dsDNA, thryoglobulins & microsomal Abs -- as horrible as this sounds, I want something comes back abnormal in the hopes that IVIg or plasmapheresis may help. Prednisone at 40mg of a week didn't help at all.
Also, no Lyme co-infections detected, but have had history of short-term memory loss, dyslexia, word-retrieval problems, strange sweating patterns, eczema, prostatitis (as mentioned before)...also HLA-DR4 and HLA-DR7 positive...maybe this is all an autoimmune problem...everything in my body feels like it is being attacked -- nerves, bones, muscles, connective tissue, skin...seem to be getting worse every single month no matter what I try in terms of medicine. HELP!
Also, no Lyme co-infections detected, but have had history of short-term memory loss, dyslexia, word-retrieval problems, strange sweating patterns, eczema, prostatitis (as mentioned before)...also HLA-DR4 and HLA-DR7 positive...maybe this is all an autoimmune problem...everything in my body feels like it is being attacked -- nerves, bones, muscles, connective tissue, skin...seem to be getting worse every single month no matter what I try in terms of medicine. HELP!
Not sure when your problems started but is it possible you had a allergic reaction to Aleve? Also for the prostate have you seen a urologist. My husband had problems for quite a while with his prostate and after many docotrs and way too long he found one who completely took care of him where no one else did.
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