arizona girl

Hi, anna, you could pm Ericka in orlando and see which doctor she is seeing at mayo jacksonville. She finally found a doc there to diagnosis her. She is dealing with an autoimmune neuropathy, stiff person syndrome. It is possible they could have a small fiber neuropathy, a lot of autoimmune diseases cause this. The doctor that diagnosis this is a neuralmusclar neurologist that deals with autoimmune disease. Rheumatologist's are not the only specialities that deal with autoimmune disease. There are a lot of post here on the forum if you search small fiber neuropathy, you can also google it and see if your husband fits. Your daughter is like I was and still am, I also have some of the same symptoms as your husband. I have SFN and low immuglobluins, a quantitative immunoglobulin should be checked as well as cbc with iron and ferritin, b12 to see if there is hidden anemia. I also tested for eds and lymes and other conditions. Test for as much as you can. It took a long time for them to figure the right tests for me, but once we were on the right track things came up positive. A real relief, pots is a set of symptoms usually being caused by something else, it is the correct move to look further into this for underlying cause. I lived in florida when I was younger and live in arizona now, the combination of heat and humidity was more then I could take. It's hot out here but mostly dry, so easier to take. good luck

I think a neuromusclar neurologist, but gosh don't really know for sure. There have been a lot of tv stories about fibromatosis. I don't know where you live but you need to see a doctor that specializes in treating that disorder. I bet there are some online support groups for that condition, they may be able to refer you to someone. When you get a response like that from a doctor, it means that your out of their field of expertise, and they don't know what to do with you. I wouldn't go back. Call around and see if there is one who deals with what you have. You could also call Phoenix Neurological Associates and tell them that you sfn along with fibromatosis and see if they can refer you to someone in your area. Your instincts to not wait, are correct, keep on pushing until you find a doctor that understands what you dealing with. Can whoever is treating your son treat you? Good luck wish I could help you more, I just don't know enough about what you have.

Oh erika, we knew you weren't crazy and we were appalled with what those doctors did to you. I'm so glad you found one that knew how to look at you as a zebra not a horse. I've see enough to know that at lot of doctors don't look outside their box of training and because they can't figure it out think you have anxiety or something, that is such a disservice to their patients. I agree with you that in many cases pots is secondary, I don't know why more doctors are not looking closer at autoimmune causes. I don't think pots is one of those conditions that is truly idopathic, I think if we look deeper we will find that something is off with one our body systems. Dinet has done such a good job of listing what those mechanisms and causes could be. We just have to keep pushing till we are satisfied that we've found our missing piece of the puzzle. I just finished 3 months of pheresis @ 2 xs a week. If yours is autoimmune it's pulling those autoantibodies out of your blood, your body is still making them so once you stop they will build up again. So, if your symptoms come back that means it was working and you may need to continue. There was a lady with me who has CIPD Chronic Inflammatory Demyelinating Polyneuropathy, she has been doing pheresis for 18 years. I thought that might be something your symptoms pointed to as well. You need to watch you hemoglobin and iron levels with pheresis. The pheresis did help me! Now I go on to IVIG, due to low quantitative immunglobulins. You know IVIG is the primary treatment for Guillain Barre, you did recover from that, maybe the IVIG did work for you. Maybe you needed maintenance doses to keep these newer symptoms from happening. It can take a few months to know if it's working. I think once you've had Guillain Barre you are succeptible to developing other immune problems. That is why I'm shocked that that doctor didn't dig deeper instead of deciding you were a head case. I'd file a complaint with your medical board about her, now that she has been proven wrong. If she did this to you she will do it to another patient. It sounds like you are finally in good hands, I'm so happy for you!

Hi everyone, sorry I wasn't up to being on the forum this week. I can't answer some of your questions because I don't know enough about your symptoms and or tests and treatments you have already had done. What I can tell you is that like a Pots diagnosis, SFN is not the end point, it is is one of the possible causes of pots symptoms, but like pots there can be many causes that bring on SFN. Autoimmune diseases, heredity, toxcity, and conditions like diabetes can cause SFN. Many doctors will stop once they know it's SFN and try to treat symptoms, like the pots ones. However some causes of SFN are serious and progressive, so for peace of mind they should be ruled out. A neurologist or immunologist who knows how to treat autoimmune causes is the type of doctor to see. In my case it appears to be autoimmune, I also have low to no IGG and IGM immunogloblins and low iron. This is called hypogammaglobulinemia or Chronic Variable Immune Defeciency (cvid). I also have excessive catechcolamine response to posture. Tests that showed the autonomic and immune dysfunction for me were: TTT, catecholamine/STD/SIT, Quantitative immunogloblins, iron, ferritin, and skin biopsy. Many other autoimmune diseases and cancers were tested and ruled out including our Erika's Stiff Person Syndrome. My treatment with plasmapheresis did indeed normalize my HR/BP, reduced pain levels, and some other autonomic improvements. During these treatments perhaps because they were monitoring my blood more closely or the introduction of Cellcept an immune reducing drug, anemia was found, further testing showed no immunogloblins. My insurance will now allow me to treat with IVIG to go at the autoimmune low immuno cause. So if you have an autoimmune or immuno cause, treatment protochols may allow you to treat with plasmapheresis and/or IVIG and a number of other medications, but it depends on what you narrow it down to. Sounds like the neuro at Mayo in Jacksonville gets it, as well as my neuro here in arizona. I start IVIG treatment tomorrow, wish me luck. I did also find the following info on SFN, and Yes Macksmom autonomic dysfunction does include hyper as well as hypo sweating. Hope this helps! SFN- Table 3.1 Symptoms suggestive of small fiber neuropathy Sensory symptoms - Pain* - Paraesthesias - Sheet intolerance - Restless legs syndrome** Symptoms of autonomic dysfunction - Hypo- or hyperhidrosis - Diarrhoea or constipation - Urinary incontinence or -retention - Gastroparesis - Sicca syndrome (dry eyes, etc.) - Blurry vision - Facial flushes - Orthostatic intolerance - Sexual dysfunction * Pain in small fiber neuropathy is often burning, tingling, shooting, or prickling in character. ** Restless legs syndrome is a disorder characterized by disagreeable leg sensations that usually occur prior to sleep onset and that cause an almost irresistible urge to move. Sensory symptoms in SFN typically consist of ?positive? sensory symptoms, including pain and paraesthesias. 1-9 The pain is often of a burning, prickling, or shooting character. It may be worse at night and may interfere with sleep. Allodynia and cramps may also occur. These cramps usually affect calf muscles, and may mislead clinicians to think of other diagnosis if they are not aware of this feature. Some patients present with late-onset restless legs syndrome (RLS).10 Especially in RLS patients without a positive family history, SFN should be evaluated. However, not all patients with SFN suffer from pain. Patients may also have ?negative? sensory symptoms, including numbness, tightness and coldness. Sensory symptoms are usually distal and ?length-dependent?11, but they may sometimes be patchy or asymmetrical.7,12,13 The latter may indicate that a pathological process takes place in the dorsal ganglion rather than a typical length-dependent neuropathy. Because autonomic functions are also mediated by small myelinated and unmyelinated fibers, symptoms of autonomic dysfunction may also occur.9 These may involve increased or decreased sweating, facial flushing, skin discoloration, sicca syndrome, sexual dysfunction, diarrhoea or constipation. Symptoms of orthostatic hypotension seem to be uncommon except in disorders such as amyloidosis and diabetes.7 Occasionally, excessive localised sweating (e.g., face and chest) is associated with generalised hypohidrosis or anhidrosis, but it is only the excessive sweating that the patient is aware of. The degree and distribution of autonomic impairment in patients with painful feet have been evaluated in a prospective study by Novak et al.14 A preferential impairment was seen of cholinergic and skin vasomotor fibers, sparing systemic adrenergic fibers. It is important to remember that symptoms of autonomic dysfunction are not always sufficiently severe to be mentioned spontaneously by the patient. Furthermore, in clinical practice, subtle autonomic dysfunction such as acral vasomotor symptoms or mild distal extremity discoloration may not always be fully appreciated. Finally, as distal autonomic neuropathy often does not result in orthostatic hypotension, Ewing tests, which are widely used to assess autonomic function, frequently remain normal and hence autonomic dysfunction can easily be overlooked. Some patients notice consistent worsening of symptoms with heat exposure, others with exposure to cold or with activity. Sometimes patients have increased sensitivity to pressure. Spontaneous exacerbations and remissions may also be presented. Finally, it is remarkable that many patients with SFN complain of severe and disabling fatigue. Cause/pathology Cytokines: Suarez89 postulated an immune mediated mechanism as the cause of idiopathic autonomic neuropathy. Moreover, it is remarkable that SFN seems to be frequent in immune mediated diseases such as sarcoidosis24,90, Sj?gren`s disease91 and systemic lupus erythematosus (SLE)92, leading to the hypothesis that there might be a common pathway in immune mediated diseases resulting in SFN. Gorson and Ropper1 suggested that an auto-immune mechanism causes idiopathic SFN, as three out of four of their patients improved on intravenous gamma globulin treatment Hoitsma, Reulen, De Baets, Drent J Neurol Sci 2004;227:119-30

That's not true, it does help with treatment course. If a cardiologist tested for it, he/she will treat it differently then if a neurologist tested for it. Cardio's try to treat symptoms and neurologists who treat neuropathy and autoimmune causes will try to treat cause first, then symptoms. The treatments are vastly different depending on cause. Like pots itself there are many conditions that cause SFN. Like in hansel and gretal it's like following the bread crumbs through the forest, one crumb leads to the next. If you have SFN it is very likely that denervenation of the nerves in the blood vessels is causing the lack of constriction and causing the blood to pool thus causing the pots symptoms. If SFN is found then the possible causes should be ruled out or in, treatment will follow depending on what is found. It's unfortunate that sometimes the findings aren't pursued to their conclusion. We can't wait on the doctors to figure it out for us. Oh, and Qsart alone does not rule out SFN. Mine was found by skin biopsy. Please read on dinets home page the mechansim and causes section. It really educated me on what tests to have done. I tested for eds, anemia's, autoimmune diseases, different types of neurological conditions, etc., I posted a while back all the tests my neuro did. In the end, SFN was found with hyperandregic response, my catecholamines jump on standing, so my BP/HR go up. I was swinging high to low every time I changed posture. Also,during treatment a low iron, low igg and igm immunoglobulin anemia was found. I now qualify for IVIG. As my SFN is autoimmune caused. Believe me a positive test can change the direction of your diagnosis and treatment. Like many of us here on the board, I don't look sick and mostly don't act sick. I try to be up beat and not act sick, when it came to doctors diagnosising me, that attitude didn't help me much. My positive TTT not only made me credible it opened doors and lead me to doctors I didn't know existed. I know the testing gets tedious and expensive, but when they finally do the right tests and figure out what is wrong, it is so worth it.

Hey cleaned out my in box you can pm now if you want. Phoenix neurological associates in arizona is the name of my docs practice. They have a web site you can look at with quite a bit of info. What part of the country are you in?

Yes, they are looking for small fiber autonomic dysfunction. It will document if you have it, just saying I don't sweat isn't proof you don't. It can catch signs of autonomic dysfunction earlier. A skin biopsy is the gold standard and 100% diagnositic if you've progressed to that stage. I believe it is pretty painless, good tool and more comfortable then doing the sweat test. It is worth doing. Skin biopsy in addition is best you can do. If you have a small fiber neuropathy, the cause needs to be determined. Cause will determine best way to treat. If it is autoimmune there are different ways to treat it, then just treating symptoms.

Hi, not sure where you live. I know a doc that will do most of these tests and he is a neuro. Not all neuro's are equal, you need find one that specializes in treating autoimmune neuropathy. It is obvious from the doctors response she does not understand the labs you requested. The urine mets if abnormal might show you in the right direction, but they alone are not enough. The test that measures catecholamines in the blood is a tricky test, you do have to make sure you don't eat or take in certain foods and drugs prior to it. I think if you google labtests.com they have pretty good list on how to prepare. The plasma catecholamines must be done lying down and then standing. At least a half hour of lying down no talking or moving, be very quiet and still, before the blood draw, bring a blanket if you get cold easy. Don't talk to the tech when they come into do it either. The two tests are then compared to see if there is a difference. My supine epinephrine was elevated and my norepinephrine almost tripled on standing, had no measureable dopamine. Yes, you are correct this test does measure all of those. If norepinephrine jumps over I think 600 you are considered hyperandregenic. Norephinephrine causes you blood vessels to contract bringing the blood back up to your brain, when your vessels fail to do so on their own. Not sure what it means if they are low, think the labtests.com discusses that. Hope this helps, let me know if you need further info.

Sandy, Have you looked into an autoimmune neurological cause like CIPD or autoimmune autonomic neuropathy. Autoimmunity can attack any tissue in the body including the heart valves. Even MS is considered autoimmune. The reason why I ask, when I saw Dr. Grubb, I had just had a workup with an autoimmune neurologist who did a skin biopsy showing small fiber damage, he agreed with the neuro that it was likely autoimmune. Since then I have been treating with plasmapheresis and have had improvements in pain and bp/hr. Also while treating there, one of the nurse's wife, who has scherloderma, also autoimmune was given the opportunity to go see Dr. Richard Burt at northwestern in chicago. He is treating autoimmune diseases like ms, diabetes, cipd, etcs with adult stem cell transplants. My nurses wife had this treatment and has now completely recovered. No one knows the long term response yet, but it was almost miraculous. She is back to work. If you google this doctor you can read more about what he is doing. He is completely ligite. With you now showing demyelinating disease in the brain, which would by in the neurological world for sure, you might qualify. BTW, I just got anemic too. My iron and ferretin are low and I have a high WBC, so they think it is a bleed somewhere. I was on an antirejection drug called cellcept, trying to get me off the pheresis, we think that is what caused mine. Any way best of luck to you, though you might like a new resource to look into.

Well I'm not sure what a pots diet is, but I eat plenty of protein. They are checking my iron and ferritin, so I don't know about that yet. I did look up the cellcept and anemia and it can cause a kind of anemia. I hope I don't have to take iron pills, multivitamins make me ill, I have trouble digesting pills. This seems to have happened so fast I can't help but suspect the cellcept. Thanks for the input.

It has really tanked down 3 points to 9.8, my PC said at 8 you are hospitalized. My WBC is up too. They took some blood work to see if they can figure out whats causing it. Neuro says that the pheresis wouldn't cause this to happen. I was so excited cause I have been having signs of improvements, that kind of stalled the last few weeks, as I had expected the tachy to be the next thing to improve. He had put me on cellcept, there is a possibility that may have caused a GI bleed. To soon to know. I have never had anemia before that I know of. My sister has it, they found it when she got meningitis. I am at menopause age but my cycles have been every 25 days, I was hoping for less frequently not more at meno. Don't bleed a lot though so I don't think that is it. The funny thing is I don't feel any worse then usual, except for some pelvic pain. I rarely get fevers over 100.3 and the only time I usually get them is after talking and they go a way after I lay down and stop talking. My PC is like if you get dizzy or lightheaded go to the ER. I sort of always feel like I'm on the edge of that with the pots, how am I suppose to know the difference? I'm so tired of this, I'm tired of being tired. I'm tired of fighting to find out whats wrong. I just want to get better and get my life back.

Hi tara, While I'm not new to the illness, I too am new to the autoimmune small fiber autonomic neuropathy diagnoses. There are some other things that can cause SFN, I did test for as many of them as possible. The ANA did help us lean to an autoimmune antibody as the possible cause. So we are treating me under that protocol. I see from your meds that you are being treated for your symptoms with many of the meds that are common on this forum. My next question, since I've had the chance to go before you, would be what other conditions have they tested you for and what have you ruled out or in? Next would be do you want to just treat symptoms or take a shot at treating cause? I had a bunch of blood tests to rule out a bunch of other rather scary causes. As I was already aware of these causes, it gave me peace of mind to know that I didn't have any of them. But, had I had one of them treatment protocol would have been first based on treating that primary condition that is causing the autonomic dysfunction, not just treating the autonomic symptoms. I also am now trying to understand the gang and length involvement. I read a bit about it and the other post from the gal who was treated for AAG with IVIG. I am older then her and have not progressed to the severe dysfunction she has had. I'm grateful that mine appears to be a slow progression, but I can see that I am headed in the same direction, if I do nothing. I have some of the symptoms she has but not all of them. I do get syncope, but I'm usually hypertensive still on standing, which means my body is still able to compensate to some degree. Interesting that she had all the hallmarks for AAG and still tested seronegative, and then she responded to IVIG. BTW in your first post you asked about IVIG, have your docs suggested this to you? As far as not having the burning symptoms of classic peripheral neuropathy, I did not really have that yet either when I was your age, it has only developed for me in recent years. Most of the studies on PN suggest that it starts at the fingers and toes and works up, then to autonomic dysfunction. In my case it is the exact opposite. I started having presyncope symptoms as a child. I bet if we did a poll people on the forum would see they had autonomic dysfunction long before any PN came on board. As for most of us here that is always the big questions what came first and what caused what? Even the researchers are still working on it, I don't know that there is an answer yet. When you say you have autonomic symptoms, which ones do you have? This forum is such a wonderful resource to come and talk with each other and try and figure it out, I'm so glad you found us. Your story of symptoms, diagnosis and treatment will help the next person who comes looking. I look forward to hearing more about yours.

I don't know but aren't you suppose to take them to the hospital when there is an acute lyme infection, especially with those kind of symptoms. It might call for intravenous antibiotics. Have you googled treatment for an acute infection? This doesn't sound good.

I my, the poor kiddo's been through enough. I agree higher does per Dr. Rowe. I'd just by pass the local internist and call Dr. Rowe's office give them your local pharmacy number/fax and have them call it in for you. You can just tell the other guy Dr. Rowe had already ordered done this for you before you talked to him. You are a good advocate for the both of you. Hope you consider the IVIG and if you do hope it works for you.

Oh my gosh, thank you so much for sharing your story. I do believe that they tested me for that gangliopathy and it was negative, so I thought that ruled it out. Apparently that is not the case. I'm so sorry to hear how severe yours got, before treatment worked. I'm so glad you are doing better, you give the rest of us hope. I have symptoms also in all the areas you mentioned, just not as severe. I don't sweat, except nite sweats, I was getting fevers when I talk, they are not as high now, have had a colon rupture, digestion and motility issues, so far my BP/HR go up up up on standing, if I don't sit down or have an extra stressor like heat or motion I will get syncope, I have high levels of catechcolamines, which why I'm probably not hypotensive on standing. I have a lot of all over pain, my eyes, nose and girls stuff are very dry. My regular eye doc did the strip test and they were very dry, but this was before I found out about the neuropathy. Maybe I should have my eyes checked by optomologist, MD. I have had slow improvements with the plasmapheresis. My supine HR is no longer in low 50's and hasn't gotten lower then 65. On standing it is now going higher then it was and feels more noticeable. My BP has also moved much lower, I was topping out as high as 170/140, now I'm mostly in the 130/90 range with a few spikes higher and a few below 100/for both systolic and dystolic. I also think I am eliminating more normally too and not getting full so fast. The pain levels have also decreased. I still feel unwell when I stand. The day I feel really good when I'm up right will be the day I know we have finally got over on this. Thank you again, please keep letting us know how it goes.

Hey dani, sorry to hear your not feeling well. Not sure what the flashes mean. I was wondering how motherhood was going for you? Hope other then this recent flu it has been going well. Did you ever get back into see that doctor, who wouldn't see you while you were pregnant? Hope you feel better soon, that's tough especially with a little one on board now.

Hi tara, sorry missed your question. In my case I do think that an autoimmune antibody is attacking my small fiber autonomic nerves and thus causing the symptoms of dysautonmia which are symptoms of autonomic dysfunction in my case. A positive ANA at the very least is an indication that there is some sort of autoimmunity going on. I had a very high ANA for years, diagnosed by a rheumy. I was told back then that it was an indicator and as you that it wasn't specific enough, to know what it meant. I think that they are now finding that a lot of people with the neuropathies also have a positive ANA, so maybe it is a more specific indicator then was thought in the past, and maybe more likely to be associated with neurological autoimmune conditions then rheumatic ones. 80% SFN is pretty high, do you have autonomic dysfunction as well as the burning neuropathy in the arms and legs? Are you being tested and treated by a neuro or a cardio? Do you know what they meant by the postgang involvement? I think it is worth bringing up. If you want to read up or get a referral to a doctor in your area, perhaps you can take a look at my docs website: "phoenix neurological associates". He might be able to suggest someone in your area that deals with autoimmune neuropathies. Potsmom, I still don't completely understand the length dependent differences in neuropathy. My biopsy results were: "abnormal nerve fiber density at the distal site with normal findings at the proximal site. This pattern is consistent with a length-dependent neuropathy affecting small nerve fibers." I have biopsy sample pictures too! So, it seems your kids and I have the same kind of findings. Did they do skin biopsy or something else to determine this? Also a while back I posted all the tests that Dr. Levine ran on me to rule out other causes, if you want to see what he tested for.

I know it is probably obvious, but I don't know how to insert a link to an article into a new post. Anyone know how to do this? Can you give me a step by step instruction. Thank you

Thank you so much for posting this. I have yet to fight for this treatment, we are trying other things first. From what you are saying here though it seems it might really help. How she responded is very similar to how my neuro said it would work. He was going to do two ivig back to back days and then once a month for 3 months. He would continue if symptoms improved and revisit IVIG if they returned. He said that we would start to see results by the second month. Which sounds like what happened with your daughter. You know there is a familial dysautonomia, have you looked into that? Your right it is now being used with a lot of autoimmune diseases. It is nice to know that this could be an option for me, thank you for sharing your experience, you are the first one that has posted about using it. Do you mind if I ask which autoimmune conditions your family deals with?

Thank you rama! You always put things so clearly and to the point. I did have a positive ANA for years. My neuro also tested me for all the other known auto antibodies so far other than the ana I am not positive for the other known ones. He tested me for a bunch of other stuff too, all normal. He then called it idiopathic, which is how most of the small fibers are classified right now. But you are right while he couldn't use IVIG because insurance denied, he ordered the plasmapheresis as a diagnostic tool as well as a treatment. When I responded as he expected, it confirmed his leanings toward autoimmune cause. Whether this will work long term, jury still out as far as I'm concerned. AJ, even according to the article you posted IVIG is used to treat many conditions that are not large fiber nerve based. Many of the neuropathies like CIPD involve both small and large. IVIG for autoimmune small fiber isn't FDA approved yet, doesn't mean it won't be. As it is used off label with success, it probably will be approved. My neurologist confirmed to me that all treatments for autoimmune based small fiber are experimental, as diagnosis and treatment are still very early for this nerve disorder. The skin biopsy itself is only about ten years old. As more people get diagnosed and treated, treatment course will change. This is probably the main reason you aren't seeing it associated with small fiber more often, it is still in the research stages. I am getting treated at a large hospital in phoenix. I am just lucky that there is a neurologist that specializes in autoimmune neuropathies in the phoenix area. Dysautonomia is such a general term to classify symptoms, there are so many causes and many people come here to see where they fit in all this. This dysautonomia forum is very broad. I think most of us pick and choose which posts apply to our underlying cause. I only post about what relates to me. I wouldn't know what to suggest to an EDS or anemia person, but they and many others post here too.

Glucophage can cause some digestive issues, but other then that it is an old good medicine. Test levels of what? I had very elevated insulin found during fertility work up, many years ago. Hysterectomy doesn't cure pcos as it is an endocrine disorder that effects the reproductive organs. No my neurologist has nothing to do with it. I have had some signs of improvements and changes with the pheresis, I still feel unwell on my feet. It is still to soon in the treatment course to see end results yet, plus with the cellcept being added in I may be getting side effects from that. There are enough improvements with no severe side effects so far, not to continue for now. I will post updated news on my treatment when I have something new to offer.

Yes, you are right aj, this treatment we are discussing is specifically for autoimmune small fiber neuropathy, not dysautonomia's in general. Dysautonomia is the umbrella name for all these orthostatic intolerances. If you say had EDS as your cause, then IVIG would be useless. These treatments are directed at pots patients who have confirmed autoimmunity, even small fiber neuropathy can have other causes then autoimmunity. IVIG is FDA approved for several forms of autoimmune neuropathy, small fiber is not one of them yet. It is however being used off label to treat it. I don't think we used the term dysautonomia while discussing this question, just small fiber. If there were other IVIG pots patients on this board I'd love to talk with them.

And this my friend is the difference of opinion between the research cardiologists and neurologists. Neuropathies cause cardiovascular symptoms, cardiologists if they can't find a cardiovascular cause will simply treat symptoms, which doesn't get at cause outside of cardiology. There are a few cardio's that look broader like Dr. Grubb in toledo, but most don't. As small fiber neuropathy has already been diagnosed, my guess is that is what is causing the pots symptoms. Perhaps the kawasaki damaged the small fiber nerves leading to it. So there could be a relationship. A cardiologist though may not make that connection because they are not neurologists. A neurologist treating small fiber neuropathy is who I would see. Of course in my case I didn't make it to a neurologist until I had spent many years testing with all the other specialists out there. Had I seen a neuro sooner maybe I would have been diagnosed sooner. Both neuro's and cardio's treat pots. Cardio's don't treat neuropathies or autoimmunites. Your cardio is only looking at vessel blockage and is completely ignoring the fact that nerves control how the vessels open and contract. So nerves are involved with vessels and those nerves in the vessels are the small fiber and c nerves. Many other specialists may be involved if you have found another cause for your pots like EDS or Anemia. I think a lot of us get stuck treating with cardio's and never look further into underlying cause. My treatment course is experimental, but follows same proven treatment plan established for other neuropathies. Those treatments can be symptom based only, IVIG, plasmapheresis, immune dampening meds like cellcept.

Well my neuro did order this for me after he diagnosed small fiber neuropathy. My insurance united health care denied saying it was experimental for my form of neuropathy. I guess it is not yet FDA approved for small fiber. However all treatments for small fiber are experimental as treatment and research are still very young. Ivig is used for other forms like polyneuropathy. He believes these neuropathies are autoimmune based and seems to be treating small fiber with the same course of treatment as other neuropathies. IVIG is expensive about $30,000 per treatment. After ins denial we started plasmapheresis which pulls the antibodies out of your blood. I had some mild improvements and things did change, my response confirmed an autoimmune cause, and he has now added in cellcept. If this does not work then he will probably go back at insurance for IVIG. If none of these treatments work then I will back to trying to treat symptoms and hope it doesn't get worse. He said that it takes six months to a year for the nerves to regenerate once the antibodies are over come. From what I understand small fiber and c nerves can regenerate. So, I don't think with small fiber, length of time you've had it is an issue. Of course, the sooner any of these neuropathies are found and treated the better chance for recovery. Unfortunately, I think if it is autoimmune, once you stop treatment it will return. There is no cure yet. I'm curious Tara have you been diagnosed with small fiber and has your doctor suggested treatment with IVIG? My best guess at getting a doctor to treat in this manner, is to try and find a neurologist that specializes in autoimmune neuropathies and treats with ivig, the centers that do skin biopsy for small fiber would also be another source. In phoenix, Phoenix neurological associates do all of this and have an informative webpage if you want to go look

Lenna, I don't know much about kawasaki or the other stuff, but I do know a bit about how neuropathy can cause pots symptoms. If there is neuropathy of the vessels which your son has had a history of, the vascular nerves are suppose to contract on standing and oppose gravity to get the blood to the brain. If the nerves fail to do this the blood will pool and cause the pots symptoms in attempt to overcome the blood pooling. Some of us have an adrenaline surge on standing, which also causes the vessels to constrict to get blood back up. Those of us that do that tend to get orthostatic hypertension as the adrenaline causes an overcompensation. Some us are only tachy and some of us go hypotensive. By skin biopsy I was diagnosed with small fiber autonomic neuropathy probably caused by an autoimmunity. Is kawasaki autoimmune? Anyway the small fiber and c nerves are the ones that cause the vessels to contract on standing. Has your son been screened yet for small fiber neuropathy? It could be logical to think that the kawasaki may of damaged those nerves. The test I had to confirm this were TTT, skin biopsy to look for small fiber damage and supine and standing catecholamines (adrenaline). There are also sweat tests that can look for it. I don't think you are crazy for looking for a connection, it seems logical to me. If your neuro, though already thinks your nuts, it might be time to have a new neuro put a fresh set of eyes on this. I would look for a neuro who specializes in autoimmune neuropathies and one who knows how to test for and treat small fiber neuropathies. This is a newer field in neurology, so you might have to do some research to find one in your area. The good news is that there are other ways to treat it other then just treating symptoms. None of the treatments your son had were either appropriate for me or worked for me either. I am in that process right now of treating cause. I've had some mild improvements, but it is to soon for me to say this treatment course will in the end work. BTW Ivig is also a treatment for small fiber neuropathy. Good luck with this!