arizona girl

No, it can not. It can however diagnosis a pheo. It is necessary to compare supine vs. standing and see what changes. The test is done pretty much as carrie described. My results for example was slightly elevated epinephrine, which did not change on standing, no dopamine in either position. My norepi however went from 400 supine to almost 1200 on standing. Dr. Blair Grubb diagnosed me as hyperandrenergic based on my symptoms which included a very significant rise in BP and HR on standing, example 169/110 and HR as high as a 120. The cat blood test only proved his diagnosis. My resting hr starts in the low 50's. My supine BP is normal or at times hypotensive. I was having huge swings with posture change. They are correcting now that we are treating my cvid and autoimmune disease, as well as utilizing labetalol an alpha/beta blocker. I still have a lot of pain and fatigue and GI issues which we are still working on. My cardio has told me there is no cure for what I have, "However we can manage this very well." I would say I'm slowly getting there. I was though fortunate that we were able to determine why I had hyper pots to begin with. Many times it is difficult to find the actually reason why one has pots and that is considered idiopathic. The best that can be done then is to try to treat the symptoms. I believe though retesting should be done periodically, as sometimes immune causes can take time to show themselves. I had autoimmune disease that showed symptoms, but not blood autoantibodies this was because I also have an immune deficiency, making it more difficult to fight infection and show autoantibodies. Once we started treating the cvid, then the autobodies started to present in the blood. Several different skin biopsies however showed autoimmunity before the blood work.

Your welcome, you need to know what the number is for the each of the Total quantitative immungobulins. There are three IGG, IGA, IGM. Are they all below normal or a combination of them below normal? It means different things depending on which ones are low. 790 sounds like the range for igg. It will be hard for her to get it approved as 790 is boarderline and you responded to your vaccine challenge. IVIG btw is given thru a IV. Subq is also immunoglobulin and is given into the muscle. Subq you usually get weekly and are taught to give it to yourself. IVIG is given on a more monthly cycle and requires a nurse or infusion center to give it to you. I do ivig so I only have to deal with it once a month and I can't imagine being able to stick myself. Subq though keeps your totals more even throughout the month. You are having an unusual response. However that could be due to your antivirals. Maybe you will be lucky and that will correct some of the things you've got going on. IVIG is good if you need it, but not something you'd want to do if you don't need it.

Kris, if you'd like to read more about sub classes go to http://primaryimmune.org. There is alot of information about immune deficiency diseases. Your vaccine was done to see if your immune system is still functioning inspite of the low igg's. It was your total igg that was low not your iga and igm, right? Since your responded to the vaccine it shows your system is working at some level. It may be possible that your viral load and infection was suppressing or over stressing you immune system and now that you are treating that and bringing down the load, it may be starting to work more normally again. I see why you doc thinks it would be good for you. I'm on it and it has been helpful but it is not a cure and does not eliminate all dysfunction, you still need to treat other known illnesses in addition to ivig.

No, we are just sending out an educational brochure to them like many organization's do. There is also no guarantee they will even read it when they get it. If you want to make sure your doctor reads the brochure, you may want to let them know that DINET is sending one their way. We would only need to screen them and get their permission if we decide they are someone we would like on DINET's physician's list. I will be working on updating that list, after I get some training on the webpage. Once I'm trained I will put out a request for doctor's for the list and will start the screening process with the new doctors.

Issie and tachy, please send those doctors and and your suggestions to naomi at the email account above. I'm just doing Dr. Goodman and my own doctors locally. I don't know if Naomi is sending a cover letter. I'm assuming it is just the brochure. I think if you want brochures to contact doctor's yourselves pm Rachel and see if she is okay with that. It is a good question? The brochure may be better received when given through a personal contact, but that is something you should run by Rachel first.

Hi Issie, I'm going to be contacting Dr. Goodman with a personal letter from me and Dinet. He and Dr. Levine have been working together and referring patients to each other. Dr. Levine will back from Medical leave at the end of June and got through his surgery and is just starting to feel better. Which is really wonderful news. That is a good idea about mayo's brochure area. I'll ask Rachel to send me more brochures for that. That is great you've been sharing the video.

Tachy, yes that is fine, case managers are health care providers too! They also usually deal with more difficult medical cases. It would be good to be on their radar.

Hi Naomi, Thanks so much for volunteering for this very important DINET mission. I encourage all fellow members to jump in and participate in one of DINET's most important missions which is to inform/educate. Together we can help get the word out. You can see a sample of the brochure and e-mail information at this link: http://www.dinet.org/brochures.htm Please provide the following information for your Physician... Name of Physician Street Address City State/Province Country ...and email that information to: DINETbrochures@gmail.com Naomi will take it from there. Thanks again Naomi!!!

I was on clonidine prior to seeing Grubb and it was a terrible drug for me. I was first put on the patch form and developed a skin allergy to the adhesive. It also never completely controlled the hypertension. Of course at the time I had no idea I was swinging posturally. When we switched over to the pills is when it got really scary, it was almost like my body developed an addictive response, requiring more and more of it to keep my pressure down. I think because I was a pooler, clonidine made my vessels even more relaxed causing more pooling, which resulted in my hyper norepi back up system having to produce more norepi to keep the blood going to my brain. Let's just say they way it was prescribed to me was not a fun experience. I do think it has pain killer and muscle relaxing properties. It does lower bp/hr though. I agree with your concern about lowering you further when supine. You can have equally disruptive sleep symptoms when your bp/hr get too low during sleep. I'm happy to give you a list, as it happened to me. I would think there are other treatments to help you sleep that wouldn't further lower your bp/hr. I think a lot of us have simply used benedryl. If your bp/hr are low during sleep and you don't have dry eye/nose syndrome, it might work better for someone who has low bp, as one of the listed and known side effects is that it can cause hypertension. I usually check my bp/hr after I go to bed and then as soon as I wake up before I move around a lot. I kept a chart for a while. BTW I'm hyper diagnosed by Dr. Grubb in Toledo. He prescibed me labetalol the short acting form, I am on baby dosages of it and have the flexibility of increasing the baby dose on bad days. Labetalol is an alpha beta. It though doesn't make me sleepy Labetalol has worked fairly well, at low doses it keeps me down most of the time and doesn't drop me when I sleep, however I still do get spikes. I can also not take it at all with no serious rebound response. We are however treating my underlying causes, so I have had some improvement from those treatments. I swing from low to high as a result of autoimmune small fiber autonomic neuropathy which was probably caused by autoimmune disease/immune deficiency, accompanied by hypermobility and an mthfr gene defect. Take your pick which one is the underlyer or maybe all of the above.

Rich, I know you sort have been hoping for this. What diagnostic codes is your doctor using to get you approved? Is he the one that is from the neuropathy association you went to? I was not approved for sfn as you know, it was when we found the cvid that I was finally approved. I hope your approval is quick and unchallenged. I have some good tips for you before you get your first infusion that will help keep side effects down. Let me know when you are ready and I'll help you out with that. I've been on it two years and have had no major issues after we switched ivig products after the first four months. Do you know which ivig product they are ordering for you? Some are better then others depending on your associated conditions. I won't be around for a few days, so I wish you well on this new journey

Yes there is a sub group of pots that have standing or orthostatic hypertension. Dr Grubb diagnosed me with it calling it a hyperandrenergic form. It drops as soon as I lie down. There are theories being researched right now as to why this is happening. In my case because I do have documented autoimmune small fiber autonomic neuropathy. We have also documented that I also have a significant surge in norepinephinre upon standing. We thin, that in my case that is a compensatory response to my blood pooling as a result of my sfn nerves not being able to constrict my blood vessels on standing. When your body does not do that as it is suppose to then norepi kicks and constricts them as part of the fight or flight response. This often causes an excessive release of norepi, which then results in high bp and hr on standing. Dr. Grubb put me on labetalol to help calm that response it is an alpha/beta and also helped with the supine hypotension and bradycardia I was getting while sleeping. This response has also improved as we have addressed and treated my underlying cause of this response which in my case is a combination of autoimmune disease and an immune deficiency call cvid. High bp that is continuous regardless of body position supine or standing is considered essential hypertension and not a feature of pots.

Hi lynnie, You are correct abnormal thyroid function can cause a high heart rate. Before pots is diagnosed it is one of the conditions that should be ruled out. I still have my thyroid, however recently tested positive for autoimmune thyroid disease with a normal tsh. So a normal tsh does not rule out abnormal thyroid function. It would be interesting to know if you could also have positive thyroid antibodies tpo/ab, since your thyroid is all gone. Other signs of abnormal thyroid function are a rise in your cholesterol/lipid panel that is not related to diet, weight gain, dry hair and skin, high heart rate, etc. Since you require replacement due to loss of your thyroid. I think synthroid is the normal treatment course. There is a something called a reverse T3 test. If this ratio test is wrong it shows that your body is not able to convert the t4 to t3. So what you are describing can happen. You do feel worse when when ft3 and ft4 are at the opposite ends of their ranges. I did when that happened to me. Your endo did check your free t3 and free t4 right? These test measure the actual active thyroid hormone levels. Regular t4 and t3 are the total amount and useless. After we started treating my hashimoto with synthroid, I had the same labs you have ft4 at the top and ft3 at the bottom of the range. When this happened I had more hypothyroid symptoms then before the synthroid. For optimal thyroid function they should both be towards the middle of the range. My endo and I are currently trying to do that with me. We reduce my synthroid to .25 and then added in two 5 mcg of cytomel. That stopped the thyroid worst of the thyroid symptoms, but I still didn't feel right. On retest ft3 and ft4 were in the lower part of the range and my tsh was now at the bottom. With those numbers we stopped the synthroid and I am now working up to 3 5mcg pills of cytomel/t3. So we are getting there. My endo did not want to put me on armour as she was concerned with my autoimmunity it would trigger another autoimmune attack. Thus the synthetic cytomel, which seems to be working just fine for me. So, I am on t3 replacement only, of course there may still some tweaking that needs to be done. Also another thing I found out is that I had to take the brand names of synthyroid and then cytomel as the generic forms are often poor quality. I think armour is brand only, so I you don't need to worry about that. So yes you can be hypothyroid with just low ft3. It isn't common but it does happen. I said to my endo isn't that unusual? She said well it's not common but I have 3 other patients like you. Oh by the way I also tested positive or homozygous for a gene defect called mthfr. When this happens your body has a switched enzyme that does not allow you to convert folic acid to the active form the body uses called methylfolate. That is considered a conversion issue and my explain why t4 wasn't working for me. So conversion issues do happen. I hope my story helps you out. After starting armour and you do your next set of labs, if they and you haven't had the improvements your looking for maybe, you go to just cytomel, but you will need to discuss that option with your doctor. I'm still tweaking so I'm not sure what I will be at once we get it right. Good luck and take care.

Isn't it something when you finally get documentation and it still isn't good enough. I do agree with your concern about adrenal surgery and would want to be certain before moving forward. That surgery is extremely delicate. However if you do have a pheo the surgery would cure the pheo specific symptoms, from what I've read. If they take both it would require life time replacement. That is doable a lot of people take cortisol and thyroid meds after removal and do well. It sounds like your stanford doctors might be on the right track. You could though also have another condition on board and you may not clear all your symptoms. You can have more then one thing wrong with you at the same time. Some things can get corrected some things can't, but can be managed. My doc told me there was not cure but that we could manage my multiple issues. So, that is what we are doing. Having said that why don't you pm Thankful she and her mother are both dealing with carcinoid and her mom also has adrenal pheos that they found through the migb. FYI I have a known adrenal nodule that has only been noted half the time on mri's and ct's I've had. We know it's there and half the time the radiologists miss it. My cats jump only with posture and my blood and urine were neg for pheo. So mines probably due to the small fiber autonomic neuropathy. It is starting to sound like that migb scan is turning into the gold standard and is more advanced then an mri and ct. It can't hurt to get a third opinion. You've waited this long, I'd take the time to be certain that this is the choice that is right for you. Have they tried the medications that treat a pheo prior to a surgery decision? On that third opinion have you considered coming to see Dr. Goodman the neuro in arizona at the scottsdale mayo? A lot of members see him and love him. He is open and progressive form what I've read here. Stanford in california isn't that far from arizona. I know how it feels to being so close to fixing yourself that your willing to try anything. Try and let reason not desperation be your decision maker. Saying a little prayer sometimes helps too! Take care.

Buster, Well I was on clonidine first with the patch. Had a site reaction to the patch, which never lasted the week it was suppose to. Then I switched to orals and the nightmare began. Didn't last long on it and getting off it was scary. This was long before the labetalol and before I even new that I had dysautonomia and was swinging up and down. I'd gone through about 6 bp meds none of which worked well or caused side effects. I was on labetalol about 6mos to a year before we finally were able to start treating the small fiber nerve autonomic issues. I did have some history of autoimmune marker's like +ANA and fibro like symptoms. So my neuro felt the sfn was most likely autoimmune in nature, but might be idiopathic. We then started with pheresis and I had rather rapid improvement of autonomic bp/hr symptoms. That response pretty much proved there was an autoimmune base. My neuro and grubb's diagnostics happened about the same time. Getting treatment with the neuro took longer because of insurance and further testing. That is why I was on the labetalol without autoimmune treatment first. So there is no relationship with my symptoms from clonidine and my autoimmune treatments as they were not on board at the same time. At the low dose labetalol I'm on I've had no real side effects at all before or since autoimmune treatments started. Can't say what higher doses would do. It does have some beta features which can cause weight gain at higher doses. I've had nothing similar at all to what happened with clonidine. The labetalol did improve symptoms but didn't do anything to treat cause. Like an onion ring autoimmune causes finally became diagnostic. When we realized I was immune deficient we switched to ivig and with that I've had symptom and lab documented improvements. I had further improvement when we started treating the other autoimmune diseases. We are still tweaking that plan. I still have fatigue and bouts with painful spasms. Some of which may have due to car accident injuries. I'm working on that now. It has been a complicated and tiring path. Balancing all the specialists is overwhelming at times. However, I am for sure going in the right direction and feel really close to where maybe I will feel normal again. I don't know much about mdopa, I think that is the research level drug that vandy is using. Are you one of their research patients? Considering my experience with clonidine, your docs might be right with keeping you on the mdopa. A question you were having these adrenal surges and abnormal bp/hr issues before starting the drug, right? I've never had those surges or maybe I was having them all my life and didn't know it was abnormal, so I was used to them. The fact that you have symptoms that don't change much with posture really points to something else being off. That is not the typical set of dysautonomia symptoms we see. We do have other members who have this happening, most call them adrenal surges, if you want to search the forum for those discussions. Also with those bp numbers you are right you may be on too much and that can also cause you to not feel right. Have they ruled out carcinoid syndrome yet? We have a member that has that and may have similar symptoms to you. I agree at DINET I think we get to see a bigger picture of the many things that can be wrong. I'm so happy that you have a family that keeps you going. If we didn't have them it would be easier to just give up on this confounding condition. Then where would we be. It is why I volunteer here. If I can make it easier for someone else, then maybe my difficult path will have some purpose.

Wow, yes I can see how tough this has been on you. I know that trying to walk upstream in a creek feeling and I don't have a pace maker. We've had some on here who got worse with a pacemaker. Have you had a chance to look at any of Dr. Blair Grubbs research articles? I'm wondering if maybe the labetalol might be something you ask your docs about before trying tiz. It is also short acting and doesn't knock you out. Grubb first line for those with the hyperandregenic symptoms is usually the clonidine, which you tried already right? I couldn't handle it, so he prescribed the labetalol as it is an alpha/beta. I too go high to low and it helps regulate that swinging, without the side effects of clonidine. I really like it as I can take more if I need to and I don't get adverse reactions when I don't take it, like some beta's. Are your highs and lows related to your posture, or they do it regardless of position? I kinda think that when it isn't triggered by posture change there is actually something else going on other dysautonomia. I get the exhaustion of trying to figure out cause, it took me decades to get diagnosed. Thing is symptom treatment only helped so much and I really didn't start getting real improvement until we started treating the cause of my sfn. I agree with your doc sfn can be hard to pin down, the biopsies need to be done right with punches on the lower leg and hip. Also overtime if done again they can become more diagnostic as things get worse. If you do try the tiz, I wouldn't do it when you are watching your kids alone, until you know if it is going to knock you out. It usually knocked me out within a half hour of taking it. Everybody responds differently, so that might not happen to you. I really hope you find something that improves how you feel, so you can be there fully for your kids.

Hey Rama, The way you put things is sometimes very confusing. I wish I fit these particular research theories you keep putting out there, others might, but I don't fit them. On tilt and in life I get significant rises in hypertension/tachy on standing, higher then you've mentioned and a continuous rise until supine again. When I do get a hypotensive drop to near syncope it is sudden without warning with dramatic symptoms. Tilt showed I would have continued to drop into asystole, if they'd left me up. I do not get dizzy like you either until I'm already going down to the ground. Normally when I lay down I have huge drops and at times am hypotensive and brady when supine. I never have supine hypertension. I'm not some research test dummy this is what happens to me and has been medically documented. I agree that because I don't have sustained hypertension/tachy and can drop it fast just by lying down, I have not been worried about the consequences of sustained hypertension. However going back forth from one extreme to the other can't be great for the body. No one even mentioned hyper pots in this post. However Dr. Grubb did diagnosis me as hyperadrenergic in my medical records. I do not find his diagnostic skills and approach to be erroneous. I did not diagnosis myself with that description he did and I have the supportive testing results to prove it. He also prescribed the labetalol to treat that specific response. Which has worked very well for me. I can't get caught up with conflicting research theories, that don't fit me. I can only speak to what works for me and is happening with me. I know that I am not alone in my particular subset of symptoms. There are others like me. Enough to consider us a particular subset form of dysautonomia, whether the researchers have described it yet or not. So, please don't shoot us down the way you do sometimes, it is not helpful. I think Grubb knows his stuff and is one of the better research experts in this area. As his treatment plans worked for me and makes logical sense I will stick with his opinion in my case. I also have documented autonomic neuropathy by skin biopsy which in my humble opinion is superior to Qsart as that only tests the sweat nerves not the autonomic ones. I also have obvious pooling with change in skin color and swelling. My rise in norepi cats on standing was also lab documented not subjective and went from 400 to 1300, a significant rise. When I talk about my symptoms and responses they are my symptoms and responses. I don't fit the descriptions that you keep bringing up in regards to this and other related posts you've made on this topic. Also my point to buster is if you are getting a shoot up of norepi on standing because your body is trying to constrict your blood vessels to get blood to the brain, then interrupting that by trying to lower it might actually make your symptoms worse. So I agree trying to suppress norepi might not be effective in symptom relief. I can speak directly to that as it is what happened to me when I was put on extended release inderal. It was horrid, I was a walking zombie and was in complete brain fog. The good news for me is that we discovered that my small fiber nerves were being attacked due to autoimmune disease and cvid. If you can stop the attack on the nerves and the inflammation they will regenerate and symptoms will improve. My treatment plan which is directed at cause not symptoms has improved my overall health and symptoms. My labs continue to improve and my wide bp/hr swings are much lower now. BTW I was an athlete in great physical condition, when I first got sick, so for me upright aerobic exercise only became a problem when I started having sudden drop attacks. Upright exercise continues to be difficult for me because of that. My cardio just told me "Right now there is no cure for what you have, so let go of that, we can however manage it by treating the autoimmune disease and other symptoms and hopefully hold off progression of these disease states. However, If we withdraw your current treatments you will revert back to where you were." I feel very fortunate to be improving, I hope that give others on here hope that they can turn this confounding condition around. You know rama, I have always supported, encouraged and appreciated the way you look into things, even when they don't fit me. I'd appreciate the same kind of support and respect from you. Of course if you could find some research that describes my subset of symptoms I'd love it. Take care!

I'm not sure what you mean by SAHD. I'm trying to follow you, are you already on tiz? I don't recall what tiz did to my bp/hr, if anything. It was the clonidine which lowered me and then was causing excessive rebound spikes in bp/hr when it wore off requiring higher doses to keep me down. I've never taken methyldopa or cozaar, so can't help you there. When I was on atenenol which stayed to long in my body I was waking with low bp/hr. My bp/hr always drops when supine, so that med pushed me lower while sleeping. That is why the short acting labetalol works better for me. As an alpha/beta it works in both directions. I also get a rise in norepi only on standing and talking. In me this is a compensatory result of my blood pooling and my body's attempt to get blood back up to the brain on standing. My blood pools as a result of small fiber autonomic neuropathy. The nerve damage keeps my blood vessels from normal constriction on standing. Norepi also constricts the blood vessels, so it's a back up system. If you still have elevations in norepi on standing I am not surprised. The medications you've mention treat symptoms not cause. Do you even know why you have dysautonomia? If you have it due to nerve damage, your body will keep shooting off norepi to constrict blood vessels and may even produce more norepi to overcome what the additional medications are doing. That is what happened to me. Small fiber autonomic neuropathy is often caused by an autoimmune disease and is common with diabetics. Unless you treat the secondary causes of dysautonomia you may not improve. I am currently treating for 3 auto's and an immune deficiency/cvid. My autonomics are improving from just treating those conditions. At times I don't even need to take the labetalol anymore. I'm not cured by any means, nor will I be cured with what is available today. However, we are managing it and I am slowly improving. Without my current treatment plan though I would back where I started. I also don't understand when your slow heart rate is occuring, so don't know how to answer that question.

I've taken tiz and it is actually a muscle relaxer with bp lowering mechanisms. With me it knocked me out, you can't stay awake. I would only take it at night when I had bad spasms. It also totally dried out my eyes, nose and mouth, just sucked the moisture out. I already had issues with that and tiz made that worse. Of course meds can behave different with different people. I would not take it simply to lower bp/hr. Dr. Grubb prescribed me short acting labetalol which is an alpha/beta, he prescribes when you can't tolerate clonidine. I was on that before I saw him and my body had an addiction like reaction to it, requiring more and more to keep me down. Coming off that was frightening. Labetalol can also be tirated up and down as needed. It has worked fairly well, I can still get a break through rise when in an overly animated situation or being upright for more extended periods. I'm on baby doses and my swings have actually decreased since we have been treating the autoimmune and cvid illnesses that caused my small fiber autonomic neuropathy. Grubb had my cardio check my supine to standing cats. Only did it once my epi was slightly elevated in both positions, my norepi almost tripled on standing. I've not done the test again. Please consider if your cats were elevated regardless of position that can point to something else like a pheo.

Well, plasmapheresis is expensive too! I'm on ivig approved by insurance for low immunoglobulins. My neuro Todd Levine had wanted me on it for small fiber neuropathy as skin biopsy proved that and I had proven autonomic dysfunction. When insurance didn't approve for sfn I was put on pheresis and did improve. Pheresis is hard to stay on long term, but in some ways I responded faster. IVIG or subq is easier long term but took longer to get the same results. I was on high dose ivig and we have reduced down to one day a month. I am still on a higher amount then a classic cvid patient. Oh we didn't know I had cvid until I got an infection during pheresis. Then I was approved for ivig. I recently showed Doc Levine that study about fibro patients being found to have sfn on skin biopsy. He said I've always thought much of fibro was really a small fiber neuropathy. I asked are there any clinical trials with ivig yet? He said that there was discussion on doing it. Their practice is a research site doing trials with als and ms and other neuromuscular disease. So, if any group might do a clinical trial on this, they would be equipped to do it. ASKING YOU ALL TO KEEP DR. TODD LEVINE, neurologist, IN YOUR PRAYERS! He is on medical leave for three months, he is having pancreatic surgery due to severe pancreatitis. It is a difficult surgery and he is such a good doctor and broad thinker. I'm praying that the healer gets healed, so he can keep helping his many very ill patients, many who are much worse then I. Jangle, we will take what ever you can do when ever you get to the training level to do it. I wish you well as you go through the rigors of medical school with dysautonomia on board. Maybe you could get the researchers past their own particular research theory bias, so they are open to seeing a competitors theory even if it negates their own. That is one advantage we DINET forum members have. We see so many coming here mostly due to the high heart rate, but as we see there are so many different reasons for the why/cause. I think we get to see the bigger picture here, whereas researchers have to narrow focus in order to prove a particular hypothesis. There is a lot of just plan old common sense seen here.

IMMUNOGLOBULINS QUANTITATIVE IGA IGG IGM - Checks to see if your body can fight off bacteria, viral or fungal attacks. It is your body immune defense system. This it the test that diagnosed me with Common variable immune deficiency. My IGG were very low and my IGM didn't show at all. My IGA was good so I was still able to fight off respiratory infections. Usually IGA is low with IGG and you get a lot of upper respiratory infections with that combo.

Tpapik, Some of the symptoms you've listed are concerning. The fever, weight loss and the sterratorha. Have they checked you "total quantitative immunoglobulins"? With the sterra is that just fatty stool that is associated with celiac disease or are you have symptoms of pancreatitis? In your other post you said you were in the hospital, is that because of these symptoms. You may be fighting some kind of infection or autoimmune disease. What are you docs looking at. I can't believe your having to deal with all this after such a difficult loss. I pray they will get to the bottom of this for you and you feel better physically. I know from my own experience the emotional stuff will take longer.

I never done one either. I never felt brave enough to get it right. At least you tried. When your better you can fix it. Though only you or a moderator can fix it. Hope you feel better. I sent you a personal message.

Tpapik, Your going to need to correct your poll, if you want members to be able to answer it. You need to give a no I didn't option or I didn't have this test option. The last one you only have clean or abnormal. If you didn't have the test then you can't finish the poll. You might also want the option of had skin biopsy but not qsart or thermo. If you give all possible options then members will be able to answer your poll more effectively. Also the correct language for a skin biopsy test is "small fiber neuropathy" not peri neuropathy. I had a positive skin biopsy and never had the other two. My neuro does qsart and skin biopsy as often these types of neuropathies are patchy and can be missed with just one of those tests. All 3 would give you the best possible chance of catching it. The skin biopsies also have to be done very specifically to be accurate. If they are done right they have the highest percentage of accuracy.

I have the circle on my arm to prove it. However I had the chicken poxs anyway. I just can't remember if it was before or after vaccine. I'm older too. Considering I have an immune deficiency vaccines don't work on me anyway or for very long. I had a tentanus booster a few years ago and my antigen response was only low moderate. Don't know if back then the vaccine was a live virus, if it was I probably got it from the vaccine. CVID's can't do live vaccines or botox.

Me too! Hey, what is throwing me in that last set of research docs you posted is the following: I have doc sfn, I have doc rise in norepi on standing. However I drop low with bp/hr when supine to the the point of brady and hypotension at times and as you know I go up w/ bp/hr on standing. I almost never get dizzy unless motion or a near syncope is involved. I do get the hyperandregenic symptoms that grubb describes. With a lot of pain and discomfort the longer I'm on my feet. I'm always on the look out for a place to sit and get my feet up. I type lying down. So, I didn't fit any of those abstracts and am wondering if there is another subset I'd fit into. Obviously the cvid and autoimmune issues are a factor. I know you have some autoimmunity too! Any thoughts about why I might not fit?