arizona girl

Kuji, when you say you have pcod do you mean polycystic ovarian syndrome? Is the only way your docs have treated it, is with oral contraceptives? I have pcos as well. It is an endocrine disorder and should be treated in a similar manner as prediabetes. I am on glucophage for it. The cysts are caused by an overproduction of insulin and you can have elevated male hormones as well. BCP were the old school manner of treating it before they understood it was an endocrine disorder. I too could not tolerate BC pills. I also after having my ttt, skin biopsy for neuropathy and standing and supine catecholamines can see a pattern how all these things are connected. In my case the neuropathy keeps the vessels from contracting when I stand, the blood then pools, causing my norepinephrine to triple on standing in an attempt to get blood up to the brain. My supine epi and norepi are also elevated. These elevations cause the liver to produce excess glucose thus causing the endocrine dysruption and pcos. I have had weight gain and high cholesterol that is not caused by my diet. That is my theory on whats happening, but for the first time I can now see how everything symptom wise is connected. It makes logical sense for the first time.

I get microscopic or trace blood and sometimes protein in my urine often. I was worked up for it and they couldn't find a cause and my kidney and bladder functions were normal. I have never had gross though and that would raise a red flag to me. Now that I know I have small fiber neuropathy, perhaps that is a factor. Maybe I should go back to my urologist and catch her up, just to be safe.

You might be hypotensive. I'd just lay down for a while and see if you feel better. The test alone without the nitro is enough to make you ill. The test is so helpful, but it does make you feel like poh dunk!! Being horizontal is where I felt best after it. Your welcome, we have all been where you are and everyone here is glad to help! Now go lay down!!!!

24 hour urine won't catch what they need to know, it usually is to rule out a pheo. Dr. Grubb in toledo, who I was lucky enough to see, ordered the plasma test supine and standing. He is looking to see if you have supine elevations and how much they go up on standing. My norepinephrine almost tripled on standing. If you are pooling the body causes it to surge to constrict your vessels so can get oxygen to your brain. You do have to properly prep for the test a least a few weeks prior to having it done. If you go to vanderbilt they may do it there.

Oh Mack mom's I am so laughing out loud by myself all alone at home. You are so funny! No I don't recommend it for a way to get better nails, but it sure is a nice side effect!! It was just such a noticeable change, that I had to ask the rest of you. I did ask the nurse if the albumin they use to exchange my blood with might be doing it. He said no he didn't think so. Though the pheresis is a very easy treatment and seems to have no side effects for me just improvements. Now, surgically inserting the catheter, that was another story, ouch! I'm getting the pheresis because my neurologist has diagnoses my pots symptoms by skin biopsy, as autoimmune small fiber autonomic neuropathy. I do have a history of a positive ANA and I've had a lot of viral exposures. Don't know if those caused the autoimmunity, maybe, my mom also had toxemia while she was carrying me and I have insulin resistance precursor to diabetes, which my cardio said is most likely autoimmune. Kind of like what caused the pots, well what caused the small fiber? Neuro says it is ideopathic. That's interesting about the biotin. I'm not taking that, but my hair was very fine and thin as a child. It thickened up after I was put on dexamethesone, when they "get this" first diagnosed me with "Mixed connective tissue disease" over 25 years ago. I also got boobs for the first time in my life after taking that. That steriod though caused me to get cushings syndrome and may have caused the PCOS. I never felt better on it either. Interesting that both you and firewatcher mention connective tissue disorders.

Oh, I did forget to mention I too felt awful during the test a lot of pain and for weeks afterward, may be was worse because of the faint. I didn't where shoes, just socks, so I hear you on the feet. I think it is a good idea to have your own BP cuff at home, then you can track it yourself. My doc at UCLA told me to do just that. Supine, sitting, standing and extended standing. I was shocked when I saw what was happening and had no idea what a swinger I was. Yes, you can be all over the place, I'm not surprised that is what is happening with you. In most docs offices they take your bp sitting down, so it can look normal. I wish all doctors were trained to check bp/hr in all postures. I think more people would get diagnosed faster if they did. I just bought a great cuff at costco, if you have one near you. It was less then $40 and has the built in tracking software so you can down load to your computer and print out reports. It is the microlife deluxe automatic blood pressure monitor. Model number on the bottom of the box is: #BP3NA1-1X. You can probably get it online too. It is working great for me. It allows two people to use it, so I use 1 for supine and 2 for standing. Also I always check my bp supine when I wake up before moving. That gives me a baseline for the day, it also revealed the waking hypotension and brady that I didn't know I had. The most helpful tests that I had done in this process was the tilt, supine/standing catecholamines and the skin biopsy for small fiber. I don't know if vanderbilt does the skin biopsy but they do, do the other Qsart and sweat tests that can show neuropathy too. I found it really helpful to read all the mechanism and causes on the main dinet page, it helped me narrow down and rule out which conditions were closer to mine. Maybe you will see yourself in one of the causes. Hope this helps.

thanks firewatcher for replying. That is how mine were, except mine are normal shaped. It will be interesting to see if others have had problems with there nails. If I had known they were going to change I would have taken a before picture. I'm happy they are growing, I always wanted pretty nails, it is a nice unexpected improvement, but not something I was even looking to see. I wonder if maybe circulation or pooling problems might have messed then up.

Does to me, but you sure have a high systolic BP as well, including when you are supine. I think there is a variant where there is supine hypertension, but then you also had it standing, and your dystolic stayed mostly normal. Something you should probably ask about. I have the tachy my baseline hr is lower so I don't get as high as you. Also both my systolic/dystolic go up on standing. When I'm supine I'm almost always normal, sometimes I will get a bit brachy and hypo after sleeping. Just thought you might like to see that there can be differences and still have a positive test. I'm glad you didn't faint that means you don't have syncope, yea! It took a while but I did faint and it was similar to the presyncopes I have in real life. So I have a few things going on and it looks like mine is caused by small fiber neuropathy. If you can figure out cause that will be helpful too! With less going on hopefully you will be able to treat this easier. Happy that you know something, it is a relief isn't it? Positive tilt will now open doors for you for further testing, hope that process goes well and quickly!

I have never been able to grow mine. They would peel, split or break off easy. I never associated there not growing with my pots or even the newer small fiber diagnosis. Now I'm starting to wonder if there is a connection. Since starting the plasmapheresis my nails are growing and they aren't peeling, chipping or splitting anymore. They actually look healthy for the first time. So I'm wondering what is now allowing them to grow? This is such an unexpected improvement and visual sign of change. Which why I'm asking if any of you have had a problem with your nails?

Staci, What a fabulous newsletter and new logo. It looks great and the content is diverse and informative. Take a copy of this to any of the doctors that are trying to treat us, will surely open, eyes, minds and hearts. Keep up the good work! I look forward to reading the next one. Thank you so much for all you have put into it. M

Me too! I go up when standing but I drop when I'm supine. I'd say I'm a swinger! On my TTT I went up up, progressively got more painful, then after about 30 min I started getting the symptoms I get in real life before I collapse. Ears get stuffed, can't hear, start ringing, dizzy, sweaty, clammy, nauseu, can't see. On ttt bp/hr spiked then sudden drop. Once it starts it is very fast. That time I actually passed out. In life I'm fine one second, then I'm sliding to the ground kissing the dirt and I can't get back up. I'm just lucky I'm a slider, and I get down fast, before I actually pass out. After the tilt I also know I better sit my butt down if I get too high and reset, or I will have an episode. Interesting there was a poll a few weeks ago where someone asked does your BP go up, down or stay the same. About 40% of us went up and 30% went down, only a few stayed the same. I was surprised to see that more of us went up. I think from my recent catecholamine test (adrenaline), those of us that go up have a surge in norepinephrine as a back up system to get the blood/oxygen to the brain. It is an over reaction though cause it doesn't stop and we eventually can't take the higher levels then the body triggers the drop to get us to reset. Perhaps those that go down don't have the ability to do an adrenaline surge, so they drop right on standing and get all those awful episode symptoms. If that is what all you hypo's experience every day, my heart goes out to you. I have a lot of pain and headaches, but the nausea during an episode is the worst. Since starting plasmaphersis though I've had improvements in this area. I'm not getting as high or low, so the swings are closer together. My tachy though at times is more noticeable then when my bp was high with it. The doc added six more weeks of it and a low dose of an immune dampening med cellcept. My neuro believes my cause of pots is autoimmune. We will see to soon to know, if it's going to work.

Of course that is what I meant there are many things that can cause it and some of them are life threatening. I'm speaking to people who are new to Pots, or who haven't had a "fix" or affective treatments yet and aren't satisfied. Some newbie's may not even know that anything else could cause pots. There has already been a thread about this on the forum. One of the things Dr. Grubb said to me was "I worry about my patients who attribute everything to their Pots diagnosis, because sometimes they miss what is really wrong with them like cancer, and they find out to late. You can have more then one thing wrong." Small fiber is only one of many that could be considered. Believe me once I knew what to test for from dinet, I tested for everything I could, thanks also to a neuro who, also knew what to test for without me asking. The skin biopsy was so easy and simple. The TTT test, skin biopsy and now catehcolamine test have been the first truly nonsubjective positive diagnostic findings I've had. Those of us who have had positive TTT's after being told for so long that nothing was wrong, fell such a sense of relief and so vindicate that we think finally this it, they've figured it out. Well it sort of is, in truth though it is another opportunity for new doors to open that couldn't be opened before. II want to get better if I can, treating symptoms only hadn't worked for me, it makes sense to try to find cause and treat that if possible. Just because there are so many things to wade through doesn't mean we shouldn't at least attempt too. Of course I agree it is personal decision, but if possible it should be an informed one. This is what Dr Yan Go at UCLA said to me, "Your BP went up on TTT? Don't let them tell you it's Pots, you have not had a complete work up yet, there are many things this could be including small cell cancer, go to mayo." She scared me. If she hadn't said anything and I had not read the research here on dinet, I too might have just stopped with pots. I spent two years in the process trying the traditional treatments for pots, as I'm ortho hypertensive they really did little and I had terrible side affects from the beta blocker vanderbilt put me on. If you already know your pots is secondary to something else like EDS or Anemia treating that will hopefully improve symptoms, I do know that. I wouldn't tell anyone how to test or treat other known conditions, unless I had them myself. I can only speak to my story and hope to help shorten the course to diagnosis for someone else who is new to pots and may have similar symptom patterns. Thanks to dinet I was able to read through all the different causes and recognized myself/symptoms as small fiber, it turned out to be the right one this time. Though it is probably autoimmune based, mine is idiopathic and can't be proved other than by symptom improvement from treatment. Like pots many things can also cause small fiber neuropathy. Dr. Grubb told me they are finding new antibodies all the time. I've been sick for a very long time, same symptoms, different diagnosis, tried treatments for all, to no avail no improvement, except for glucophage for the PCOS/insulin resistance. Yes, I too have at times given up and had enough or didn't have insurance. Then things would get worse and I'd have to get back on the horse again. The truth is when I first got sick they probably couldn't even diagnosis small fiber or treat it, but they can now. How much better I will get remains to be seen, but if I do I will surely let you all know. Then you can decide for yourselves if it fits you and if you should consider pursuing it. Surprising to me there have been changes, I was skeptical, I didn't even want to get my hopes up. It is still too soon to know, but it is a step in the right direction. I wish there were other here who had been down the path I'm now going on. I would love to ask them questions and get guidance. So far though no else here, has responded that they have done what I'm doing. Please if there is anyone else, I'd love to hear from you? If there is no one else, then I hope my story and treatments one day can help someone else. I love how all our different stories come together here on the forum and create a better more full understanding of dysautonomia.

Hi, I must of missed this, sorry for late reply. What I would say is that emg doesn't rule out neuropathy, only large fiber neuropathy. I know that are several small fiber biopsy places in the nation. My pheresis is done outpatient at Good Samaritan in phoenix. The treatment is twice a week, so you need to be near a hospital or center that does this outpatient. I don't know where the other hospitals are. There may be one nearer you. I would call Dr. Levine's and find out if there is someone closer to where you live. Phoenix Neurological does have a web page and is getting ready to open their own autonomic lab minus tilt. A neurologist that specializes in autoimmune neuropathy is the type you are looking for. My experience at vanderbilt was similar they have a research agenda that they stick pretty close to. I feel very lucky that l found Levine. If I hadn't asked about small fiber I would never have known he existed. The TTT and skin biopsy totally changed the course of my treatment and testing. I'm hopeful I will improve, but research, testing and treatment for small fiber is very young. The autoimmune factor is also less researched in dysautonomia's. I have had mono and been exposed to TB, HHV6 and cytomegalo viruses. Dinet and a doctor at UCLA who told me not to accept that diagnosis, made me realize that I couldn't settle for just a pot's diagnosis and that it was probably being caused by something else. We know here there a lots of other causes. I don't understand why anyone once pots is diagnosed wouldn't pursue it further. I'm so glad that my story was encouraging to you. That is why I posted it, if I can help anyone else get to a medical conclusion faster then I did, then my ardeous course to diagnosis won't have been for nothing. Good luck with this and don't give up until you are satisfied. The fact that Vanderbilt says you should see a neuro, really supports your cause and gives you credibility.

Oh I guess there will always be a part of us that wants to know how will go! I must say that the last two years with a car accident, colon rupture, surgery a year later, and the pervy doctor, I had lost faith that the medical system would keep me safe, I thought I wouldn't wake up from the surgery. I really thought I might die this time with so many close calls. After I did wake up, my husband was like well your still hear! Then I realized that if god was ready to call me home he would have already. I realized then that I must still be here for a reason and to do his work. It also became very clear to me that we don't have to be healthy for him to work through us. Just look at how we support each other here on this forum. As far as which way medically I would go. I have mild left ventricular heart dysfunction, but we know it's there so hopefully we keep it from getting worse. My autonomic dysfunction has been slowly getting worse. The scariest is when I don't feel like my lungs are filling when I breath. I think that would be a scary way to die. So I'm happy to say the latest treatments have made that better, my blood pressure is better too. I'm hopeful that treating the pots as an autoimmune disease will prove curative or treatable. That would be so great, cause I do want to live fully while I'm still here. I dream of dancing again. I loved partner, swing and yes disco dancing so much. I've finally understood that while my body gets in my way, it is not who I am, it is the shell that gets me around and one day it will fail, but my eternal life has already started and I will go on in joy. That has been giving me some peacefulness.

Thanks rama, that is helpful. I already do get problems with yeast because of the dryness. The fungus issues will be a good question to ask my docs about.

Thanks rama, that is helpful. I already do get problems with yeast because of the dryness. The fungus issues will be a good question to ask my docs about.

Thanks rama, yes that was what I was trying to say the autonomic symptoms are also symptoms of neuropathy. No I haven't had Qsart, the neurologist did the skin biopsy instead which superceeded the Qsart, since it did show denervation. I have the pictures and can see that with my own eyes. I know though that I don't sweat normal. I also have bald patches on my lower legs were no hair grows. The only noticable sweating I do is nite sweats and it is usually just my head and neck areas. My eye doctor tested my eyes and was surprised to see how dry they were. If the biopsy had been normal, he would have done the Qsart. Phoenix neurological is setting up an autonomic lab minus TTT, and will be doing Qsart. I asked why did he need that if the skin biopsy was enough to objectively prove denervation. He said that it will give them the opportunity to catch it earlier. As far as typical neuropathy symptoms. I get pins and needles all the time and my hands and feet puff up and feel like they have sunburn. At night when I lay down my hands and lower legs/feet will buzz and vibrate. I wake up a lot with part of my body numb. It also happens when I sit to long in the same position. For me the autonomic symptoms are more disruptive as I have gotten used to living with body pain. Wow, I've been googling a lot where did you find that they are saying they think it is an autoimmune neuropathy? I know Grubb agreed on that with my neuro. Rama do you think that is the case with your AKS? Have you considered getting a small fiber biopsy or Qsart? I know when I was first diagnosed with mixed connective tissue by a rheumy, many of the arthritis's were autoimmune. Thanks for the input, you seem to understand and find things the rest of us don't. I hope I understood and answered your question better this time.

Until you meet again . . . and he will hold you in the palm of his hand. My thoughts and prayers of with you, your family and your mom.

Dr. Grubb ordered this test through my local cardio. He hasn't seen the results yet, because of his wife's illness, I haven't sent them to him yet. I do kind of understand the norepi results, they did go up on standing causing the hyperandregenic response. The ones I don't understand are the elevated supine epi and that no dopamine showed up at all. Any of you know what those results mean. Results posted below: My results showed my supine epinepherine was 94 which about 40 points higher, it did not change at all on standing. My norepinepherine supine was 400 something, normal range, my standing how ever shot up to almost 1200, almost triple. However this was still in the normal range on it's own. They combine the epi/norepi for a total and my total was about 20 points above normal. Dr. Grubb I believe looks at what happens with the norepinephrine from supine to standing and I think considers it a positive test if there is a significant increase. I think this confirmed his diagnosis of Hyperandregenic autonomic small fiber neuropathy. We already knew from my skin biopsy that I had small fiber damage. He agreed with the neurologist that it was probably autoimmune in nature. I'm having a hyperandregenic reaction because the small fiber nerves in my vessel don't constrict to push blood to the brain, my body compensates by giving a surge of norepinephrine to constrict the vessels to get blood to the brain. I then overconstrict causing standing hypertension and tachy. Grubb prescribed low dose labetalol and it did control the wild swings, it however made me very fatigued, which I realized once I weaned off of it to do the catechcolamine test. I had no measurable dopamine standing or supine for the range of this test. It said that the dopamine was below reportable levels for this test. I still don't know what that means. Any one know what that means? Thanks again for any wise wisdom out there.

My concern is that I've had exposures to TB, cytomegalo, and HHV6 viruses. I don't know if they would become active if my overactive immune systems was dampened. It says to avoid people with colds or other infectious illness. Also I was wondering about side effects too! Any one any thoughts are welcome. Thanks guys!

Oh I see where your going, I thought you already knew this, sorry! The large fiber nerves control mostly motor nerves that allow you to walk and move. The small fiber nerves are found in your arms and legs and are found in all organs and tissues that control your autonomic functions. Like breathing, sweating, vessel constriction, HR/BP, ability to produce moisture in the eyes, nose, etc, body temperature, gut motility, basically all those functions that our body does autonomically that we should be unaware of. In the legs and arms it is only it is referred to as peripheral neuropathy. Those symptoms there can be burning, pain, numbness in the stocking/glove pattern, but when your autonomic nerves are failing it can also cause your vessels to not constrict causing blood pooling. In my case I also have a hyperandregenic response to the blood pooling in a back up attempt to get the blood/oxygen to the brain. I think if you don't have that back up response you probably go hypotensive right away. So, while I do have symptoms of pins and needle pain/hot or buzzing or burning in the stocking glove area those symptoms are less severe then how my autonomic functions have been impacted. None of them work right in me, I have dry eyes, etc. I get fevers from talking and get overheated or chilled easily, slow gut motility, brain fog, was unable to get a deep breath, don't sweat, except nite sweats on/off for last 20 years, orthostatic hypertension and tachy, supine hypotension/brady, I had very wide swings supine to standing . I do also have syncope under certain triggering circumstances. When that happens it is sudden, sort of unexpected, dramatic in symptoms. As it happens my ears plug, I can't see, I go white, get clammy, nausea, ears ring, then I slide to the ground and can't get back up until my body resets. I always have most of my symptoms when upright like HR/BP, but some are always there like gut and dry eyes. They also get more severe as a women between ovulation and menses starting. Then I also get girl problems because of the dryness. I think people hear neuropathy and just think it is numbness and or pain, but that is only one kind of nerve, there are other nerves that can cause other symptoms that aren't just pain or numbness. Is this all clearer now? My neuro is almost ready to open an autonomic clinic focusing on small fiber nerves, testing like Qsart/quert, he won't have a tilt table yet. He said that while the skin biopsy proves small fiber damage, those other tests will find it earlier. If you go to phoenix neurological associates web page you will see that he deals with several autoimmune types of neuropathy. He called mine autonomic because those where my worst symptoms.

Hey Rama, I was hoping you were around tonight. I read your post earlier today about aks/pots. Glad to see there is some one else on the forum in the same shoes as you. It's nice when that happens and you can compare notes. Which results that catechcolaimines? Don't know if you read my posts in the beginning, but after my TTT was positive, I went back to the first neuro who said there was no one in AZ to treat pots, he made some comment in my records about anxiety. To prove him wrong I gave him my TTT results, he had me come in for an emg which was normal. It would have ended there if I hadn't ask about small fiber, which I read about here on the forum. He then referred me to another neuro at phoenix neurological associates, (they have a web page and talk about their research on it). They actually do the skin biopsy and do the diagnostics. That skin biopsy showed lower then normal small fiber density. The neuro also did a bunch of other tests to try and see if it was amyloid, carcinoid, bunch of other stuff, posted here a while back. All that came back normal. So, when they can't find some other cause, he diagnosed idiopathic small fiber, which means that don't know the cause but suspect an as yet unidentified antibody to the small fiber nerves. The symptoms for small fiber are peripheral neuropathy and autonomic neuropathy, I have symptoms of both, but the autonomic is worse. Dr grubb defined the hyperandrengic response, which is now confirmed as my norepi almost tripled on standing, explains the standing tachy/hypertension. Grubb when I saw him agreed with the autoimmune small fiber the neuro's labs showed and even acknowledged the IVIG treatment as a possibility. So the plasmapheresis was a test as well as a treatment, if I responded to it, which I did it proves unidentified autoimmunity. I guess there are a lot of neuropathies that are autoimmune, like polyneuropathy, guillian barr. I need to ask him more questions, but I'm guessing from his experience he is treating me the same as he would if I had one of the other neuropathies. The skin biopsy hasn't been around long yet, so all treatments for it are really off label or experimental so far, no standardized treatment yet. I sort of think I may be a test dummy. Also when I first got sick forever ago, I did have a positive ANA for many years. First they though it was mixed connective tissue, treated didn't get better, meds made me worse, then fibromyalgia, didn't get better, then when I lost a baby, found PCOS and was treated for metabolic syndrome due to the very high insulin. Glucophage helped with that. All that stuff though never explained the autonomic stuff and the near faints. I did have an adrenal nodule, I thought might be the cause and when researching that I found dinet and saw that I had so many symptoms of pots. After reading here under mechs/causes I suspected the small fiber. Well I did have a positive TB skin test, my chest x-ray was negative, did take preventative INH for 3 months until abnormal liver tests stopped the treatment. So, you don't think the other viruses are much to worry about? Do you think you AKS is autoimmune? If I did have just a positive skin test, do you think TB could be an issue? By the way on that catecholamine test it also said I my dopamine was below the range of this test supine/standing both. My epi was about 40 points high supine and didn't change on standing. Do you know anything about those numbers?

Well, first I did do the supine/standing cathecolamine test and do have some questions, I'll do a second post on that. Geez, what a long winded diagnosis name. After the neurologist and Dr. Gubb came to this diagnosis, neuro suggested IVIG, ins turned down as experimental, his next option was plasmapheresis w/albumin replacement. The worst part of the treatment was the surgical implantation of a tunneled catheter into my right juglar. They must have put my neck out and it was the worst most painful neck and shoulder muscle spasm everrrr! Four days after relaxers and pain killers it calm down about a week/half total of pain. The Treatments The first treatment I did have a sudden hypotensive episode and almost passed out lying down. They pushed fluids and I rebounded. Was sick though for the next few days, like what happened after the TTT. After the first plasma though, I never had a problem again during treatment. It was very easy, you just lay there don't feel much of anything, lasts 1-2 hours. Some days I was tired afterwards. After the 3rd treatment the pain in my hands subsided. I didn't realize how much they hurt until they stopped hurting. The week of the 4th and 5th treatment I had changes in my blood pressure. Woke up hypotensive and dizzy a few days (not the norm for me I usually go up) I don't know how to describe it, maybe like what happens to rama I had this strange pressure in my head and my carotids felt like the size of garden hoses, pushing up, that couldn't get the water out. I also started having irregular heart beat symbols on my BP cuff. Tachy was more obvious. Went and saw my cardio she ran ecg, it was borderline as usual however I was having S waves instead of T waves I usually get. She wasn't concerned as it was borderline and the nature of the treatment. After the 6th treatment I stopped having really high standing blood pressure. It usually would get up to the 150-170/100-120 range. Stayed lower then 130/90s, until the day before the next treatments when I started creeping up to 140/90s. Except for a few sudden spikes when talking, I maintained these numbers through the rest of the treatments 10 total. It also seemed like my BP/HR weren't dropping as low when I was sleeping. I use to have pretty wide swings supine/standing. Those are closer together now. Heart rate however has been higher standing and I can feel the tachy more now that the BP is lower, but my baseline HR is higher then it was, so that might explain the higher tachy. It's wierd when both were high together I didn't always feel the tachy, but then I had no idea that I had tachy until one doc had me start doing the poor man's tilt at home. When I saw what the readings were I was like whoa no wonder I feel tired when I stand up. The other changes I noticed was that I was able to finally get a deeper more refreshing breath, my finger nails are growing, my skin color and texture look better, gut was eliminating more, but still had lots of bloating, I have lots of painful lumpy/fibery tissues under my skin most noticable in the arms, legs and hips. They seemed to decrease in size and where much less painful. I still didn't feel good when standing, it kind of felt like I had made a dent in the right direction though, but it would take much more to turn it around. I stopped the treatments and was off for a total of 8 days waiting to see the neuro. Five days after my last treatment everything flared again, BP up, pain up, swelling in hands and feet, etc. I realized then that my pain levels had slowly dropped and then came back with a vengance. I now know how much pain I had been living with and had just gotten use to. Oh I didn't take any BP meds at all and after the spam subsided I only took advil and darvocet a few times, much less then usual. Last thursday, saw the neuro, he said that the types of changes confirmed to him that my neuropathy was indeed autoimmune in nature. I asked can you have a rebound after stopping the plasma? He said yes, I said that fast, he said yes again. He then said that as I couldn't stay on the plasma long term, that he wanted to put me on "Cellcept" a anti-rejection drug that dampens the immune system. He said it takes 3-6 months to start working and gave me 6 more weeks of the plasmapheresis. So did I start moving in the right direction, yes. Don't know if it would have helped if autoimmunity wasn't suspected. Did I have a set back when I stopped, yes. So my question to you all now is do any of you know anything about Cellcept? I do have concerns that because it weakens the immune system to stop you from attacking yourself, that I could get sick from something else. I have had a positive TB skin test, no active disease, and have also had positive titers for cytomegalo and the HHV6 herpes viruses. I don't know if those are just exposures or if they are lying dormant in my body some where Please feel free to opine, pick away, or ask questions. Any input from the wise ones on the forum are welcome.

Hi yes I finally had mine done. Make sure the test is done right, if she is doing the blood test. You also have to stop taking certain meds and stop eating certain foods. The test should be comparing her supine vs standing. She must lay still and quiet for at least 20 min, 30 is better. Try not to move, talk or have a reaction when they draw the supine blood. Then it is drawn again after standing at least 20 minutes. I was told it needs to be done fasting. My results showed my supine epinepherine was 94 which about 40 points higher, it did not change at all on standing. My norepinepherine supine was 400 something, normal range, my standing how ever shot up to almost 1200, almost triple. However this was still in the normal range on it's own. They combine the epi/norepi for a total and my total was about 20 points above normal. Dr. Grubb I believe looks at what happens with the norepinephrine from supine to standing and I think considers it a positive test if there is a signficant increase. I think this confirmed his diagnosis of Hyperandregenic autonomic small fiber neuropathy. We already knew from my skin biopsy that I had small fiber damage. He agreed with the neurologist that it was probably autoimmune in nature. I'm having a hyperandregenic reaction because the small fiber nerves in my vessel don't constrict to push blood to the brain, my body compensates by giving a surge of norepinephrine to constrict the vessels to get blood to the brain. I then overconstrict causing standing hypertension and tachy. Grubb prescribed low dose labetalol and it did control the wild swings, it however made me very fatigued, which I realized once I weaned off of it to do the catechcolamine test. I had no measurable dopamine standing or supine for the range of this test. I still don't know what that means. Any one know what that means? Under the assumption that this is autoimmune in nature. My neurologist ordered a series of plasmaphersis. I just finished 10 treatments. I see my neuro on thursday to go over the changes. I can say that things are certainly different. I did not go back on labetalol after the catecholamine test. After the 3 plasma my hands stopped hurting and my over all body pain went down. After the 6th treatment I stopped having standing hypertension. It will sometimes still spike during an animated talk. The tachy is more noticeable now. I also had some unexpected hypotensive readings and symptoms. But it is doing something. So yes, to question is it worth doing the test? It should direct the type of meds/treatments that will work better. That though also depends on her symptoms. The test just needs to be done correctly. You need to make sure it is done right. Check with your lab first. You can google the test and read up and print a copy of how it is to be done and bring that with you. Good luck to you. If any one has any persepective on my results, love to hear from you all!

Interesting that you bring this up now! My cardio who is really a PA, but a very smart one, recently said to me "You are dealing with a lot of post traumatic stress, because of what the medical industry has put you through." Considering I had one primary doc say to me "Are you one of those people that looks things up on the internet, but there is nothing really wrong with you.", a few months later my colon ruptured, even though I had told her symptoms she should have recognized as infection. Then the icing on the cake was to have the ep cardio that did my tilt table take criminal liberties with me during the exam. He victimized so many women, when the justice system is done with him, and he is convicted or pleads, they are going to require he give up his medical license. The truth is that though I do believe my current cardio has my best interest, and who also worked with this guy and turned him into the medical board, I will probably always read my own labs and doctors notes and question her and do my own research to make sure I get the best care I can. I don't see how I can ever just leave it in their hands anymore. My concern is that his license won't be revoked and he will some how get it back, because the medical boards do so little to police the doctors they oversee. He is a symptom of a greater problem. I recently googled "when medical boards fail to protect", there are so many stories out there on the web, where this has happened. The failures of oversight are so great it may very well be criminal negligence. Sometimes god drops your purpose in your lap. It has been made very clear to me that at least in the US, we are blissfully ignorant in our belief that there are adequate protections in place for patient safety. In 2008, Public Citizen in DC did a study on how effective the National Practioners Data Base was. It had been created to help bring down malpractice claims and have a more effective national data base that state medical boards can check doctors against. Now fifteen years after it's creation the report showed it is basically an empty shell as only 5% of hospitals are peer reporting inadequate doctors. It showed that there is basically a conflict of interest with the hospitals reporting doctors, as those doctors are directly responsible for bringing patients to the hospitals and therefore bring in revenue. I realized recently that much of the time we patients are actually revenue sources. When it's good for the bottom line and our procedures can be billed to insurance, we are more likely to be given the opportunity, whether it is the best treatment course for us or not. Of course, if it's hard to get it through insurance, we are less likely to get a treatment that might truly help. There is story after story here on our forum of how many of us of experienced this truth ourselves. Myself and some of the other victims are working on figuring out what went wrong with our medical board, the guy had six complaints. We know for sure there needs to be more transparency, so patients can make informed choices when selecting a doctor. Patty Skolnik in colorado, who's son was killed by a negligent surgeon succeeded in getting their medical board to make huge changes in the direction of patient safety. If you take a look at what's now on their medical board you will see what I mean. Mostly, these changes are going to be directed at preventing physical harm to patients, but we here know also the emotional distress and heartache we have had to endure trying to figure out why we are sick. It has taken so many of us years and years to finally be vindicated. While vindication is such a relief and sweet, trusting again well that's another story, isn't it? We are a resourceful group here maybe some day soon we can come together to make a difference.