arizona girl

I don't believe either of those test are tests for autoimmune diseases. A crp is a general marker for inflammation and the wbc is a marker for infection or blood diseases if it's abnormal. Your crp is great showing no inflammation. Mine is elevated and does point to my autoimmunity however I did have to have specific tests to reveal my autoimmue disease. My wbc is now 8 after being elevated due to infection as a result of a defective immune system. Neither of those test though rule out autoimmune disease. Your list of symptoms point to some form of dysautonomia and with the neuropathy on board could point to small fiber autonomic neuropathy which may be causing your symptoms. The causes of neuropathy like dysautonomia are many, some are causes by autoimmune disease, some they call ideopathic because they are not yet able to determine cause. If you can find a neurologist in your area that specializes in autoimmune neuromuscular disease and does skin biopsy for small fibers, that would be a good doctor to see. That doctor should be able to at least screen in or out some of the lesser known, but common causes of SFN/perif N.

My experience with clonidine patch was I became allergic to patch with redness, burning, swelling at the site. It also didn't last the full week and when I went to the pill form my body kept demanding more and more of it to keep the swings from happening, almost an addictive response, getting off of it was very scary. I would never take it again. Grubb prescribed labetalol instead and I have been fine with it and can easilly reduce it as my symptoms improve.

Zelda, Thanks all that information is really helpful to point you in the right direction. Like many of us here your daughter is a zebra, meaning the doctors are missing it because they are looking for horses. This is a saying they are taught in medical school and most docs have learned it so well, they don't look outside of their boxes. No wonder you are concerned, once you get to the right specialists and they start doing the right tests she will get diagnosed. I suspect she has a primary immune deficiency considering the level of infections. I would have her screened for that first. There is medical site called primaryimmune.org I'd like you to go to the one I think is most likely is hypogammaglobulinemia or Common variable immune deficiency. This site also has a doctor referral program. Good news is this is a treatable condition which should bring down her infection rate. I also have this as well as several autoimmune disease and small fiber neuropathy. The tests they should be running on her are the total quantitative immunoglobulin checks iga, igg, igm, sub igg panel, ige and igd and a vacinne challenge tests. If you look at her cbc there is an albumin globulin ratio test, if that is out of range even a little it points immune dysfuntion. These test show how the immune system is functioning. It is very common to have autoimmune disease and or connective tissues with this. Considering how young she was when she started getting infections she was born with it. Charlotte cunningham rundles is the foremost researcher on it. Google her name and cvid and you will see the work she is doing on it and her research into the genes proabably causing it. She is at mount sinai hosptial in new york and is allergy/immunology. BTW most allergist don't know how to treat this, she may also be able to refer you to an immunologist in your area. From your earlier post it is very likely her pots symptoms are due the infection rate, maybe anemia, and the autoimmune component attacking those small fiber nerves. All these things can be fairly easily tested for. A TTT while good only proves the autonomic dysfunction not why its is happening. Cardio vascular treatments only address treating symptoms, not underlying disease if it isn't cardiovascular in cause. I went undiagnosed for a very long time, but am getting fairly effective treatment now, no cure available yet, but it can be managed. Make sure you keep good medical insurance, you are going to need it to cover her treatments if it turns out she has any of this. I'm so sorry that it has taken you so long to get someone to hear you. The pots diagnosis though is a blessing as it lead you here. We have some pretty darn smart and supportive members here. Let me know if I can help you with anything else.

Zelda, you are experiencing what many of us on the forum have, a dismissive, cavaliar at times almost ignorant understanding of the symptom pots. Pots alone is a diagnosis of exculsion. Perhaps pots alone may not seem serious to some doctors, but it still can be life altering, however if it's a result of some other illness, not knowing and treating the condition, can be very serious. Many disease states can cause a rise in heart rate on standing and or hypotension which you cardio eluded to, also some of us get hypertension on standing as well. If you have not gotten them already get a complete copy of her medical records from him including tests, and see what they say. You'd be surprised at what they don't tell you. If he is pigeon holing your daughter into some kind of anxiety or depression, I would not even share those doctor notes with another doctor, I'd only share the labs which are nonsubjective. The notes are your doctors opinion, that is all. You only have to give the next doctor what you want them to see, they are usually fine with just lab and test results. Have you been on dinets main page and looked under mechanisms and causes yet? While some of information there needs to be updated, it is very informative and dynakids I agree is also good place to search. Your daughter may have something called small fiber neuropathy, or if she is getting infections that she is not recovering from well, she may have a primary immune disease, lots of allergy like reactions could be a problem with mast cells, if she's also hypermobile she might have eds, or any number of autoimmune diseases which are diagnosed by neurologists, rheumy's, endocrine or hematologists, as well as the gi doc you've already seen. Do you feel most of her symptoms are explained by the celiac? Autoimmune diseases tend to cluster to together, so there can be more then one thing going on. All that being said there is some stuff you can do to evaluate her on your own. Get an automatic bp machine costco's microlife is a good cheap one that keeps the readings for two people. I use one to measure my waking/not moving supine bp to get my baseline and the second one to measure what is happening to me when I'm upright, multiple postions and times. Measuring your daughter in these different body postures is called the poor man's tilt, if you want to read more on how to do it. Your daughter could have any combination of changes in her heart rate and blood pressure. If it is dropping and she is hypotensive that causes nausea and dizzyness all by itself. Factor in that you already know she has celiac which is an autoimmune disease, and may be contributing, then she may have more going on then just pots. I'd say your are at the start of your journey with this, perserve and don't give up until you are satisfied the doctors have it right. Listen to your gut, the fact that your here asking questions means you know they are missing something.

El, what was the name of the test for these ig tests? Was it a total quantitative immunoglobulin or was a for a specific disease? There are many specific diseases that can be tested for with ig's associated with that disease. The global test is the TQI test. If that was the test, your IGM is normal - some labs actually have a higher cut of then 230. The elevated IGE can be associated with allergies and asthma. If your other IG's were close either to the low or high end of their ranges there may still be something off. Did they also check your sub igg panel and on your cbc have your albumin globulin ratio ever been out of range? Anything off on those test can show a sick immune system depending of whether you go high or low. What did your doctor say?

A word of caution here. This center has been discussed on the forum before. I agree please read the posts about it. Also notice this is considered alternative. If you only have pots and have ruled out underlying diseases that may being causing pots, biofeedback may work for you. However, if you have another disease state, which could be any of many causes for pots, then it may not work at all, as the disease process that is causing pots first needs to be addressed and treated. I can speak from experience on this. My autonomic symptoms are improving with treatment for my messed up immune system. I will require life long treatment however and at least for me there are no cures for what I have. It can be managed though with treatment.

Hi diamond. I have sfn and have had a sfn skin biopsy twice. It is a pretty easy, not very painful test. The shot to numb you is the worst part. It is a very tiny circle skin punch at the lower leg and upper outside thigh. Healed fine both times and can't even see it now. Make sure you take care of the wound until it heals. If you google small fiber neuropathy, skin biopsy and Saperstein and levine, you will get a very good study about sfn and the skin biopsy, as they helped pioneer this test. I don't know how to insert the links, but their publications are easy to find through google. You very well may have small fiber neuropathy which includes the autonomic nerves, and the most likely suspect in your case would be the diabetes. I'm not diabetic but I have hyperinsulinemia and several autoimmune diseases which may be the cause of mine. You might google treatments for small fiber neuropathy. If you have large fiber nerve (the nerves that control your muscles) damage, you may have some kind of polyneuropathy which is approved for ivig, in the usa it is not yet approved for mono neuropathies. I do get it but that is because I also have cvid immune defect. With my current treatment plan much of my autonomic dysfunction has improved. I take synthroid, glumetza, plaquinel, ivig-privigen, and labetalol-(very little now). You are wise to bring this information with you. "What about small fiber neuropathy?" to a neuro who had just told me my emg was normal, were the magic words that got me referred to my current neuro, who finally confirmed the diagnosis. I wish you well on this next phase of your journey, stay strong!

Issie, don't know for sure yet if she deals with all genetic issues just know mthfr for sure. I just googled her last name and uofa and her uofa page popped up. The number is a master number for uofamedical. She doesn't have an individual one. I guess it's their scheduling number. If you do that you will get her bio and everthing, better then a phone number which I actually don't have. They've called me or emailed me. Yea, I'm hoping she looks into to those other defects, my cousin has the gluathione one.

Hey, issie, yes there is suppose to be something called mthyle trapping. I didn't feel good when I started the metanx, so I stopped and just did sublingual b12, jarrowdoph and added in flax oil pills for a week or so. I just started the mantex again and I don't notice anything yet. My symptoms might have been because of 44 day menstrual cycle. Who knows these things are so hard to figure out. However my b-12 and d are up finally. Those labs that my cardio did for mthfr showed really high inflammatory markers. She said that those alone would explain the achy fatiguey not well feelings. The other labs while still abnormal have shown improvement since starting synthroid. She didn't think that I was at risk for a heart attack even though that is what health diagnostics labs concluded from their tests. So it is probably the autoimmunity causing the inflammation, she also didn't think ivig was a factor saying it would probably help not make it worse. My neuro though has me down to half of what I was on and some of the feet and hand neuropathy issues are back, though my bp/hr are really good compared to what they were. So it's still a mixed bag for me. Maybe upping the synthroid will help calm the inflammation down, I started that and the plaquinel in the spring, so maybe not enough time yet to turn it around. Yes, I'm excited too. It looks like they may be considering me a research patient and consult with the genetic counselor, before seeing the doctor may not even cost anything. Her name is Dr. laukatis at uofa medical center north campus, it you want to look into her. Might not hurt considering you have eds too.

I was just thinking the same thing Jana. Hey, I'm going to be down in tucson to see a genetist at uofa, two times actually. My husband is going with me at least to the consult with genetic counselor and then a few weeks later meet with the doctor. She specializes in the mthfr gene which I just found out I am homozygous for, the worst form of it. It explains a lot about my and my families medical history, including miscarriage, strokes and bipolar disease. It doesn't explain though the immune defects and autoimmunity, so I'm guessing another one of my genes is defective as well. The thing about mthfr is the treatment is bypassing the defect by giving the active form of folate and b vitamins, which seems so much easier and better then treating with a bunch of man made drugs with all kinds of side effects. Looking forward to seeing what insight this new doc has.

Hey dani, replied to you in angela's post. Glad to hear you are on the right track, most autoimmunes have treatment plans that work okay, so hopeful that means you'll get to treatment soon. What are the symptoms of optic neuritis? How did they figure out that you were hyper for two weeks and low for the rest?

batix, if you read dr. grubbs article on hyperandregenic pots, getting itchy, jittery clamy/sweaty after standing are some of the symptoms, if your blood pressure is rising on standing that is also an indicator. I also agree that is the whole point of the ttt is to stop your counter compensating responses so they can see what is really happening. However, even on my ttt my body involuntarily tried to compensate. I had no control to stop my buttocks and legs from contracting and shaking. I think that contributed to me staying up fairly long, I was even standing for about a minute with no measurable blood pressure and only after that happened did my presyncope symptoms start and then I guess I did pass out, though I thought I was still aware of what was going on. As I was going down I said this is what happens to me in real life and can you please put it down now. then pass out, when the put the table down I felt like I'd been slammed to the ground and almost threw up. After that test I realized that I was indeed the Queen of Compensation and Avoidance, without even realizing it I had been doing all kinds of things to keep me up right. Fortunately it takes extra stressors to trigger the presyncope which I have learned to avoid.

Yes, sometimes I could swing, but the first time I ever got nausea was on a swing set. I got car sick a lot too. Get motion sick easy. It was one of the questions the neuro at ucla asked me. I now know that when it happens my blood pressure has dropped. If you can check your bp and see if your low. I will faint if or throw up if I don't lay down when this happens.

So, are they saying 10 min standing isn't always enough to show pots or that none of the tests are always adequate to prove pots. It would explain why when I went there there 10 min standing test wasn't enough for me. Even though they had tests that showed my bp went up. It took 2 more years before a formal ttt was done by a local doctor that showed the hyper response with syncope. I then went to see grubb, who ordered catchecolamine testing which proved the hyper response. My trip to vanderbilt wasn't that helpful to me, though they did suggest the salt loading in such, which Grubb then said isn't always helpful for hyper pots. So it seems to me they are reevaluating how they are ruling patients in or out not exclusive to tilt testing alone, but may give more weight to how the patient actually presents? If true that sounds like a step in the right direction. Nice to see it documented for other docs who may not even know what pots is.

Hi Dani, was wondering where you were. You still in chandler after the move? Sounds like you an angela are young moms, which is nice to share notes with. Saw you other post, I get a positive ana too, hope they can figure it out. My ana is either from hashimoto thyroiditis per endo or Undefined connective tissue per my rheumy. Who's doing your testing.

Ang, small world, I see Dr. Levine at PNA, who do you see? I know dr. hendon sees a lot of epsy patients. Dr. Levine is more up on the autonomic stuff as he treats a lot of patients with autoimmune neuromuscular disease like ms. Have they done a skin biopsy on you for small fiber neuropathy? Did they do that qsart test on you were they put the electrode on you and measure your sweat? That does sound kind of wierd only testing your bp/hr when your lying down. You said your bp/hr go up when you stand right? To test for pots you have to be lying quietly for awhile and measure then stand up and stay stationary and measure bp/hr at 1, 3 and 10 minutes. That's called the poor man's tilt. I actually get worse the longer I'm on my feet so 10 minutes is'nt long enough for me. My ttt showed the rise and sudden drop to syncope but, it took 20 mins for 1st phase, nitro then 10 mins to syncope. Have you had a tilt table test, it really is the best way to test for this. Also a test the measures your supine and standing catecholamines, if you can get it drawn during the ttt is best. I had mine done separate and it showed a 3 fold rise in norepi from supine to standing. Which diagnosises hyperadregenic pots. So, yes I am improving, but first we had to find out why I had hyper pots which Levine helped do. I have sfn, along with low immuninty(cvid), and 3 autoimmune diseases. We are treating for all those separately and my bp/hr are much better, it will take a while to start feeling better as I still have a lot of inflammation from the autoimmune diseases, which we have only been treating for six months. I'm w/ a cardio, endo, rheumy who are each treating their part of it.

Yea, I have that problem too. I live for soft cotton. Have trouble finding pj's that don't scratch me. I think it is a form of sensory small fiber neuropathy. I also have a problem with loud sudden noises.

issie, that is Dr. Manek she joined paul howards practice by scottsdale north. You might actually like howard better he is a top doc and he uses nutrtional sups which I know you like better. Don't know if manek has taken on his mo yet, as she came out standford and mayo rochester. She hasn't suggested any to me yet. Hey what endo did you decide to go to? angela, it's amazing the boatload of challenges that come all at once, mine were different then yours but as overwhelming, You think what heck else can go wrong, then one day you are past the worst of it, and you wonder how you got through it all. So, sorry you had all that on you. My neurologist office actually specialize in seizure type illnesses and have partnered with mayo on it. They also now about pots and can do qsart and skin bioipsy to look for small fiber neuropathy, they don't do tilt testing. They are phoenix neurological associates, if your doc is one of the docs that practice there, your probably in good hands. They may be a good place to get a second opinion.I know this my doc tests for a lot of rare conditions that can cause pots, they take most insurance, it might be worth it just rule some of that stuff out. Take care and wishing you better days ahead. It can get better!

Oh pooh, I saw the research paper on her website, so you'd think she'd treat it too. I haven't gone to her yet and was going to go to see about food intolerance, I don't think I have mast cell, but I do have immune deficiency which immunologists are suppose to treat, but she'd probably send me out there for that one too and I'm perfectly happy with my neuro handling that. It looks like Dr. Goodman at mayo is pulling a different immunologist in for the mcad/mast stuff, azmusic will be seeing him, his name is dr. rank, maybe ask her. I don't know anyone else up on mast cell, most docs here just seem to be plain old allergists. I did see one of the other immunologist at mayo and I wouldn't go to him again. My cardio nurse practioner is knows about hyper pots, as dr. grubb sent her information about it after I went and saw him. But she mainly prescribes my labetalol he order, she is however a good sounding board. I see her tommorrow at her new practice. Do you have any idea if something else other then mast cell is trigger your h-pots? My neuro is good for autoimmune neuromuscular causes. I also see a endo and rheumy, my pots was autoimmune immune defect cvid caused. I think a lot of here struggle with finding docs for the rarer stuff that can cause pots or dysautonomia.

Hi, I agree with naomi, there is something more going on with you then just pots. With the stroke and your child being born with special needs, there is a possible genetic defect, that I just found out I have and might fit what you are describing. It is called MTHFR gene and a blood test for it along with other thrombotic labs would rule it in or out. Some of your symptoms also sound like some form of neuropathy which can be caused by autoimmune disease amongst other things. If you can get a better diagnosis and treatment plan some of the of these overwhelming stresses may improve. So, sorry you are dealing with so much. You sound like you need additional services in your home. I know there are agencies that may help, maybe speak with your doctor and see if he/she can refer you. Your church is another good place that can help with services as well. A support group for parents of special needs children is another place to look. Did your tilt also show your fainting or drop in blood pressure. If it did you don't have just pots, you have some form of syncope and you should have no problem getting disability. One member went to the disability hearing and fainted in front of the judge, who then promptly approved her disability. So don't feel guilty about getting it. Also beware there is a stale date to apply, make sure you do so sooner rather then later. Once you get it you will also qualify for assisted services which will go a long way to take some of the pressure off your husband. When some tells me how good I look or I don't look sick. I say "yes that's my silver lining at least I don't look sick". Really though what is sick suppose to look like? Are you suppose to get hit with an ugly stick to prove your sick. I also depending on ther person, will say, well you know many serious illness's are not visable, you can have cancer and not look sick until you start chemo. So, if I can one by one get someones thinking to shift about what a sick person looks like, it's a start and maybe that person in turn will educate someone else. Just so you know within my family and friends I do whine or complain a bit about how I'm feeling. It is my way of putting up a boundary and lowering expectations, since they can't always see how I'm feeling. I can tell you also though I am still sick and have a lot to deal with, now that I'm on a better treatment plan and have good doctors on board and my friends and family understand better, I am improving and am hopeful, I will continue to do so. I understand though where you are at right now and how overwhelming it is, but you will get on the other side of this and be able to look back on it from a better place. Stay hopeful and take care.

Kim, don't know if you are aware of this but your folic acid and b vitamins also can build up your body if you have the mthfr gene polymorphism. The enzyme that metabolism the inactive forms of those vitamins has been switched, so it can not convert them and they build up in the body. You bypass this defect by supping the active form of those vitamins called the methyl forms and you must avoid the kinds found in most multi-vits and in fortified foods. Now I understand why I always felt sick when I took those most common kinds of vitamins.

Totally agree Kim. Recently my cardio ran some labs and I came back positive for the homozygous version of the mthfr gene. That means I am missing the enzyme that coverts folic acid to the form the body uses. There are many drugs/supplements that use the same pathway to be metabolize, so I am unable to take those drug/sups. For instance methotrexate which is used to treat autoimmune disease I can not take as it causes toxic build up. It explains why I had difficulties with many of the first line drugs I was given. I don't have allergies, so haven't taken those meds your on, but I've taken most of the other meds your on with adverse problems. The one med your on that also has helped me was the blue, I take that as urelle and it does seem to help my gi issues when they act up. I only take sups under a doctors supervision and actually am on several. I take D3 due to low d, that has finally corrected, methylb-12, which is the active form, that bypasses my gene defect and has now has corrected. I take flax pills and a baby asprin to counter the mthfr gene clotting issues as well-I'll see geneticist in october; I take jarrowdoph to assist gi and yeast issues along with diflucan as needed. I am getting ready to start the prescription sup mantax which will also address the gene defect, but had to do the others first due to methyl trapping. While sups may be available over the counter, I feel it is important to have your doctor involved in the what ones you take, also many sups are not of good quality and aren't in the natural form that the body uses. I can't take most multivitamins because the b's and folate are not in the active form. I don't know if you've read my other posts on this but, my extreme hyperandrengic orthostatic symptoms have almost corrected, not perfect but the best in years. My infection rates have dropped due to ivig and most of the vibrating neuropathy has stopped. So, so far so good, still have a ways to go with pain, spasms and fatigue, dryness, heat, standing still to name a few. But things are going in the right direction so I am hopeful.

No worries, Whine a way. I tend to write novels myself. Many of us have been where you are. Totally get it! You are right to be concerned about the side effect of your meds. I was placed on steriods (dex) when I first got sick and that did indeed trigger metabolic syndrome. With each med we, me have to decide if the side effect out weigh the benefits. I never start more then one drug or supplement at a time now, for at least 3-6 months if possible, then I know if new symptoms are the drug. If sides get severe I discontinue and let my doc know. I think you will find that for many of us dysautonomia symptoms are the cause of some other underlying condition, not the other way around. So it isn't the pots or dyasutonomia causing the trigger of these other illnesses, it's the illnesses causing the dysautonomia symptoms. Pots is a symptom, though it is being diagnosed as a disease. To have only a pots diagnosis, all other causes most first be ruled out. So it is a diagnosis of exclusion. That being said you have to tease out which symptoms may be being caused by an underlying condition/disease and which may be a result of a medication. Steriods and certain other drugs can raise the blood sugar. So asthma drugs have steriods and may raise bs, but can you live with out the asthma drugs, or the epilepsy drugs if they do the same thing? A low glycemic diet, some exericise can help counter that. I myself take glumetza to help control the metabolic syndrome and find it a good med that also inhibits weight gain. I so wish there was a master specialist, because you are right one underlying condition may be the culpret that is triggering all the other disease states and maybe if we could figure that out it would help all the others calm down. That is the position I am now in, as you find yourself. I have 7 specialist each treating their part of my global illness and most of them don't talk to each other. It can be overwhelming. As i read some of your symptoms/illnesses you can see that some may be med related and some may be related and part of a complex of illnesses one of which is leading to the others. Frustrating I know! It is possible you might have an underlying autoimmune or mast cell issue causing things like gerd and heart rate symptoms. Many illnesses can cause small fiber autonomic neuropathy which then causes those symptoms. Treating those underlying causes can improve autonomic dysfunction. My multi specialty treatment plan has improved and treated some of my conditions pretty well, but it is still a struggle at times and if I stopped treatment I probably would reverse. So hope my novel of a perspective helps. Perservere and you will get there. Take care!

elena is this for yourself? Having been on the forum awhile there are other polls like this if you search. What particular association are you looking for? After being on the forum a while there tends to be several illnesses that show up commonly with pots. EDS/joint hypermobility, Mast cell, Autoimmune diseases, mitochondrial and immune deficiency. Many gi issues are contributed to autonomic neuropathy of the small fiber nerves, which are also found in the gi tract. I was just trying to figure out where you were going with this and if I can help.

Lbits, it is a test that can be repeated if infections continue. One normal test does not mean it will always be normal. Couldn't hurt to have them do it again, if you have the opportunity. Those of you who have an ana and your rheumy tests were normal, might consider the thyroid antibody tests. There is a good chance my hashimoto thyroiditis contributed to my ana. Also if you google the lupus foundation and ana they have a very good description on how an ana is interrepted. Traci, the most likely cause of my ana is the hashimoto and or the undefined connective tissue disease UCTD, my endo treats one and my rheumy the other. I know also have a positive ssa and briefly had a positive sm/rnp which can point to lupus and sjogrens. Not enough to prove either at this point therefore the uctd diagnosis. It is treated the same though, I'm on plaquinel for it and synthroid for the hashi. Pam, the results of the TQI test will show numbers for IGG, IGA, IGM. If that helps you to recognize it. For sure ivig is not approved for pots, it can be approved though for autonomic neuropathy w/antibodies and polyneuropathies. The skin biopsy test looks for small fiber neuropathy, which can't be found with an emg which only looks at large fiber nerves. The small fiber nerves include the autonomic nerves. My ivig is approved because I had low igg and no igm. My neuro uses it a lot to treat autoimmune neuromuscular diseases like ms and polyneuropathy. I googled c4 and ana, and that looks like it is pointing toward lupus, it will be interesting to see what the labs say when they come back. As mentioned earlier you can also go to the lupus foundations website, it has very good information. There is a newer biologic treatment for it as well, steriods are usually prescribed but I had a terrible experience with them, so I avoid them. Yes, that mthfr is interesting isn't it? Had no idea my cardio had order it, I also had a lot of inflammatory markers along with it. I see her again next friday to go over this in more detail, I'll let you know what she says. Women with recurrent miscarriages are also often checked for it. Pretty sure that it is why I have no children, inspite of fertility treatment. Don't know much about mcas, sorry. Hope I answered everybody, let me know if I missed anything. Take care ladies!