arizona girl

Dave, did they do a total quant on you not just the sub igg? One of the sub igg being high, along with ch50 with a history of a staff infection sinus infections not clearing quickly with treatment can point to something off with the immune system. Infection or inflammation can cause it to be high from what I just read. BTW it is very common that if the immune system is defective that the body is unable to produce and effective fever when there is an infection on board. In my case my IGA was still intact so I didn't present with respiratory infections, I did however have a long history of other fungal and viral infections and had all the childhood disease more then once. My neuro checked me for sarcoid, thankfully it was negative. I also had the lip biopsy for sjogrens, my infiltrates weren't high enough to prove it yet. I was diagnosed with Undefined Connective Tissue Disease UCTD, based on my mixed labs, scalp biopsy that showed signs of lupus and sjogrens. There was enough to show some autoimmunity, along with hashimoto. Those autoimmunes along with lichen and autoimmune thromobosis are sometimes found with immune deficiency, according to Rundles. Have you had a hemotology workup yet?

Hi dkd, There are a lot of disease specific igg tests and your right about them staying positive after exposure and needing an igm for active disease. We are talking about a different test. It is the master test to see if the immune system is working and is call a "total quantitative immunogloblin" it consists of a non disease specific IGG, IGA, and IGM, a sub igg panel, IGE and IGD are usually added, if anything is off with these a vaccine challenge test is order to see if your immune system can mount any kind of response to an antigen. So this is more of a global test vs looking for a specific disease like lupus. Hope that explains it better.

That helps, but I can see why your having questions and not sure where to go. I also don't disagree with what Mom G has said either, except ruling out a primary cause. Seeking a primary cause really depends on how your presenting over all and whether the cardio medications and volume expanding treatments stop symptoms. If first line treatment works and controls symptoms and you stay stable then you might not want to look further. In my case, first line treatment did not work and I continued to decline. I turned out to have a combination of several serious immune illnesses that damaged my small fiber autonomic nerves. Treating those has improved my symptoms, however with what I have and with the treatments currently available, my doc said there would be no cure, but we could manage it. If I would stop my treatment plan, I would revert back and start declining again. Even with treatment though I still have my ups and downs, but i think the ups are starting to gain over the downs. It sounds like you have looked into a variety of causes. It is interesting about the gi issues and the symptoms starting after the scope. If you haven't already disclosed that to your docs, that info might help them. Did they ever run you through vestibular testing? They do move your head around in some peculiar ways when doing those scopes. It could be possible that those meds were a factor. Would vertigo describe what your experiencing? Trust what your gut and instincts are telling you, they are usually right. Also, did your neuro check you for small fiber neuropathy? That could explain some of the other autonomic and sensory symptoms. A neuro that specializes in autoimmue neuromuscular disease is the subspecialty to see for that. There have been several members who also started with dysautonomia symptoms after an infection or viral attack. If you read Chaos's posts, she talks some about it. If you haven't already I'd ask to look at the actual TTT test sheet they wrote up during the test. You are allowed to have a copy of it. Mine was crazy looking. BP and HR both went up, but I also did not pass out until the nitro. The nitro did duplicate what happens to me in real life however. I understand nitro can sometimes lead to a false positive result. Take care and let us know how it goes.

Love to help you out, but would really need more details. Dysautonomia is the umbrella term covering all the different subsets. What exactly happened to you during your tilt table, hr, bp, fainting? Florinef is usually prescribed to those who get hypotension and or syncopes. Autonomic symptoms can also cover other functions then heart rate and blood pressure, from temperature control, sweating and gi issues. Do you have muscle weakness or get a lot of infections, are you hypermobile or have allergy like flushing reactions. An ep cardio is really only going to focus on the heart and if it's functioning right. They ruled out any other heart dysfunction, correct? A diagnosis of dysautonomia may be just the start of the diagnostic process. It is often secondary to other causes. An attempt to rule out other illnesses should be considered. Many times a cause can not be found and it is considered idiopathic. Treatment plans will be different depending on what you find out. Good luck tomorrow!

That sound right what your neuro said. You could have had a one time viral attack that damaged the nerves. My neuro also told me that sfn will regenerate, if the offending attacking agents are controlled or like in g barre if the assault can be stopped the patient will recover. Maybe that is why he is wanting to wait, if it was a one time viral like attack, it would not be ongoing and you should recover. Did you have have viral attack prior to symptoms starting or can you look back on your life and see you've had signs of something wrong back into childhood? If it was a one time attack you will have a very hard time trying to figure out what that assault was. If you don't have a history on infections, any type of infections not just respiratory, your immune system is probably okay. A total quantitative immunoglobulin and sub igg panel can quickly check that. If any of those are low then an autoimmune disease autobodies might not show up. It would really depend on your symptoms and which ones are causing you disability to point you to what autoimmune disease or other illness you might have.

I have some recommendations, but what makes you suspect your immune system? Are you getting infections or feel like you have a fever without registering one? Immunologists fall into two categories. The largest group are mainly allergists, the second much smaller group treat defective immune systems, http://primaryimmune.org, is probably the best online resource for these deficiencies. I believe they have a link to physician referrals. The immunologist doing the most research in this area is Charlotte Cunningham Rundles. She has produced a lot of research on the subject. One of her abstracts discusses the association between primary immune disease and companion autoimmune disease. I believe in that article she also mentions that autoantibodies don't always present making it difficult to diagnosis an autoimmune disease. I would say that can be true, as I myself fit into that profile. CVID, autoimmunity and small fiber autonomic neuropathy. It also can be true that someone younger who gets dysautonomia, is able to recover, with the treatment plan you've mentioned. I don't know though if that would include someone who has documented SFN. She is located in the new york area I think at Mt. Sinai. She is easily googled though.

That's interesting about the tonsils. Do they do a cbc when they check for strep? He might have some other type of infection, if it is bacterial it could show up as an elevated WBC. Also other inflammatory markers like the crp can point to infection. The only issue with cbc is it won't always show other types of infections that are fungal or viral in nature. I also had chronic tonsilitis, sore throats and swollen glands until they took my tonsils at age 21. By then the path report said I had well developed germs centers and cryptic/holey tonsils. They were filled with those smelly hard pus balls. Interesting one of the immune researchers Cunningham-Rundles, often finds tonsil issues in her immune patients. I never had strep really either, however my sister does to this day get bad strep infections. I suspect she has immune issues too. She just has no insurance and couldn't afford to treat it even if diagnosed. I wonder why know one discussed the abnormal hypervascularity, that would seem a red flag if he is having dysautonmia symptoms? I now always read my medical records because of the lack of followup and errors. Your a real medical sleuth, stay on the trail, until your satisfied with the answers. It is too easy to get blown off these days.

Hi P, I always think it is best to follow your instincts. Often pots is secondary to other conditions. If you search the forum for eds and mast cell, you will see that those two are often found together along with pots. There is a version of eds that should be ruled out, and there is a genetic test for it to do that, that is EDS vascular. It can cause rupture of the tissues like the blood/artery vessels and gi tract. I think it can be a factor with type 3, but not as often. Most just have the classical type which causes hypermobility and stretchy blood vessels that cause pooling, which then triggers a pots reaction after standing. I know there was discussion about a good eds doctor somewhere on the midwest or the east coast several months ago. Not sure what part of the country you are in.

Hi L-mom, Sounds like you've done good by your kid. I hope the testing and medical history finds the rest of the pieces of the puzzle. You have right to be concerned about a future infection being life threatening. That is the biggest concern when the immune system isn't working, that it will not be able to fight off an infection. I have found ivig to be helpful, it doesn't treat everything and it looks like I'm on it monthly for life. If you and your docs decide that is the treatment of choice, let me know. I can provide you some tips to make it go easier and some things to avoid. I've been on ivig two years now. There are several products on the market as wel as subQ forms. Depending on ones individual medical background, some are better choices then others. Look forward to your next update.

Hi l-mom, That is fantastic that your endocrinologist has ordered all the immune tests+. She is being very thorough and those are most of the ones that I had done. Those are all the tests an immunologist would order. My IGG was so low and I had no igm, that I did not have to do the challenge. They should look at all the tests in their totality. The immune system may be partially intact and you can have mixed results. Even if there is a response, it does not 100% rule in that immune system is working correctly. If I haven't suggested it to you already, http://primaryimmune.org, is an excellent source to answer these questions. There are also several male only immune deficiencies that should be looked into. They are discussed at that site. The vaccine test. Is called the vaccine challenge. It is done to see if the immune system responds with a normal immune reaction. No response means the immune system is not working. Look up vaccine challenge test to read more about it. This is important to note, if anyone's immune system is defective they are never to have vaccines with a live virus. The flu shot is a dead one, the nasal mist I believe is a live one. BTW botox is live! So I won't be freezing my face with it. If one is immune deficient, flu shots basically have no point, your body won't react to it and it therefor will not be protective. I've had one, which happened after I found out I had cvid. I had a very painful site reaction. Not sure if my cvid was a reason. My IGA is intact so I don't get to many respiratory infections anyway. I get other type of infections, which have dropped to less then once a year since starting ivig. My low grade fevers I was getting everyday also do not happen anymore. An inability to produce an effective fever is also a sign the immune system isn't working. I don't know much about Pandas, but I do know that motor tics can be found with autoimmune neuromuscular disease. With muscle symptoms and autonomic symptoms there could be a polyneuropathy involved. I have a combination of cvid, autoimmune and small fiber neuropathy, if I also had muscle or motor issues I would have polyneuropathy. Good news is there is treatment for these conditions. Keep us posted, hope the testing goes well.

My Neuro utilizes all three. He said often SFN is patchy and can be missed. You have a better chance of finding by doing all of them. I was fortunate, mine showed up with just skin biopsy.

If you attended the Dysautonomia International Conference, would you like to share what you learn with DINET and the forum? So if you'd like to share with the rest of us what you learned and how it went please send your stories to our board member and newsletter coordinator Janie at: janie@dinet.org. Who knows maybe DINET will feature your story in the next newsletter.

If your going to the Dysautonomia International Conference this week, would you like to share what you learn with DINET and the forum? The conference is this week and sold out weeks ago. It should be a good conference. They have some great speakers. So if you'd like to share with the rest of us please send your stories to our board member and newsletter coordinator Janie at: janie@dinet.org. Who knows maybe DINET will feature your story in the next newsletter. Have a great conference and Happy 4th of July!

Okay, I'd say you should always listen to what your body is telling you. Cough is a side effect of these kind of cardio meds. Unfortunately cardio meds may only control some of the symptoms, they do not treat cause. Many cardio's just treat symptoms and don't look for cause. I'm not surprised that you have encountered this. Endocrine issues often cause dysautonomia symptoms. Treating the endocrine issues should help some of the symptoms as they will treat the underlying cause. I'd listen to the two docs that are in agreement. I have hashimoto thyroid and treating that has partially helped. I have more going on then that and treating my other causes has also helped control symptoms. I still don't feel great, but I've had improvements. High cortisol is not common in pots, unless you have an endocrine issue. So it can be if you have that problem. I'd do the endocrine testing your doctors are recommending. If it turns out to be your cause, you will be fortunate as it is treatable, and in spite of a lot of testing many never are able to figure out what is triggering their pots. I'd say your on the right track.

Bump for the newbies

NCS, and pots are different forms of dysautonomia. Sometimes they happen together, sometimes they don't. I actually think those that get the drop in bp and near syncope or syncope have a harder path then those of us who just have a rise in heart rate. What you have is just as important to address as pots on it's own, maybe even more so. There actually is a lot of research on the different forms of syncope, even if you don't actually faint. I'd try and seek out a potential cause or triggering factor. If you can figure that out then it will be easier to treat. Don't loose hope their are effective treatments for ncs.

Steve, the swinging of the bp up and down with change of posture could be another form of pots called a hyperandrenergic response or hyper pots. It is usually associated with a rise in HR as well. That is what I have as a result of the small fiber neuropathy, which was diagnosed by a skin biopsy and a very abnormal TTT. Your flushing really does sound like what the mast cell activation members describe. You can search the site by using the search feature at the top of the forum page.

Steve, try searching our site for mast cell activation syndrome. There are a bunch of members who have it. It is different then mastocytosis, as you will read. Many of the symptoms you describe also sound like early autoimmune disease. When you have this you can develop a small fiber neuropathy that effects your autonomic functions. Though honestly your numbers don't look like POTS. It also appears that you have hypertension regardless of position, and the bp meds are controlling that. You never mentioned what happened with the cough. Do you find that you get a lot of infections or feel like you are running a fever, but it never gets very high? That also can point you towards other testing. I think Dr. Therylie would be a good choice as well. She responded to a educational POTs brochure that we sent out, in a very positive way. Thanked us and ask that we send the brochure out to the rest of the cardiologists there.

Crow, actually he did he called it hypermobility syndrome. That name is being used more often these days for the eds type 3. Thanks alex, it is good to see Raj, has moved from his primary salt loading theory, and is being more inclusive of other possibilities. Most notably stating that pots is often a result of other illness and that the illness should be pursued and treated, first. Then go to treatments to treat symptoms. I so agree with that. I have an immune deficiency and autoimmunity and treating them has improved the inflammation thus improving symptoms in me. I'm not cured or full recovered but I have moved in the right direction. If I stop treating my primary cause though I would slide backwards.

Thanks Anna, I forgot that one the vaccine challenge will be done after the total quants are done.

Hi loo, Well I have common variable immune deficiency (cvid) and just posted about it in the fever post. The master test to check your immune systems is a test call "the total quantitative immunoglobulin test". Not all immunologist are created equal many are just allergists. Try to find one that has an infusion center are orders ivig. They will know how to do the right tests. This website has a great deal of info about these illnesses and can refer you to a physician in your area http://primaryimmune.org, a sub igg panel and igd, ige, may also be added and well help determine if allergies or other issues are involved. Sometimes on your cbc the ig/ratio test will be slightly out of range, so I'd go back and check that on the old cbc's. Mine had been elevated just slightly on and off for years. The seizure type shakes you've been witnessing, though others here also have them are not typical of pots. POTs simply means a rise in heart rate on standing, that's it. Certainly, symptoms when supine are not orthostatic symptoms which pots is. Often pots is a symptom along with other symptoms of some other illness. In my case my rise in bp/hr as I'm hyper w/elevated norepi on standing, was a result of my small fiber nerves being attacked by autoimmune disease, of which I have three. The ones I have often show up with cvid. As my neuro said the "causes of pots can be endless, lets rule out what we can." Also when you have cvid common autoantibodies that will point to an autoimmune disease, will not show up, which is also why one can't produce a normal fever. The immune system can not mount a proper defense. Another type of physician that may be helpful to you is a neuro who specializes in autoimmune neuromuscular disease. They can be hard to find but are worth seeing. It is very good you and your doctor are looking outside the box. When I saw Dr. Grubb, he expressed his concern that often once a diagnosis of pots is made, that his patients then blame all there symptoms on pots. "It worries me as they could have something more serious like cancer."

Hi all, Well this was happening to me, I would feel like I was sick, even get night sweats at times. I would swear I was fighting something but my temperature would never be high then the 99's. Then my colon ruptured and even with pertinitis and wbc in the 20,000s my temp only got to 100.2. When I wasn't feeling feverish, my temp would be in the low 97s, and occassionaly high 96s. We eventually found out that I had an immune deficiency call CVID. When you have this at least one of your total quantitative immunnoglobulins will be abnormally low. My IGA was normal but my IGG was very low and my IGM was none. When you have this condition you can not mount a normal defense when fighting off an infection. Fever is one of those defenses that helps you fight infection. I was unable to mount a normal fever and was walking around with low grade infections. Since starting ivig immunoglobulin replacement I rarely feel like I'm running a fever. I now have a standing cbc so that when I feel like I'm fighting and infection we check my wbc and if it's elevated I immediately get an antibiotic shot and continue until wbc is normal again. It's not perfect though because some infections like yeast and bv don't raise your wbc. Not being able to produce a fever when you suspect you are sick is not normal, and can result in your physician not recognizing that you might actually be fighting something just because you don't have a fever.

Hope it may take a while to get in with grubb. You may get in sooner with his NP beverly, who also is very good. They will not make an appointment with you until your doc has sent your medical records to him. So have your doc fax them, once you have confirmation they will most likely put you on a waiting list. I recommend calling regularly to see if an appointment has opened up. I got in earlier on a cancellation. He doesn't do a lot of testing. He requested my cardio run a supine/standing catechcolamine test. He prescribed labetalol and alpha/beta that can work like clonidine without the side effects. I'm still on baby doses of it. He diagnosed me as hyper even before the blood test confirmed it. If you haven't had a tilt yet, he may do one, but I'd have your doc request it and have it schedule before you go, if you haven't had one. There has been some discussion on his availability because of a family illness. His wife has a malig brain tumor, like Ted Kennedy died from. I saw him 4 years ago, and she'd had it for a while, and he discussed that and that he survived kidney cancer himself during my appointment with him. He is very kind. If I lived closer I would still be seeing him, but my docs here in az are managing me pretty well.

I don't know if this helps, but I do have hyper pots and shaking like you describe is not a feature of it from what I was told. Dr. Grubb describes it as more of a all body tremoulous, sweaty, jittery type response only when upright. It stops once you are supine. We had a member on here that described similar symptoms and she went on to be diagnosed with a neuromuscular condition called stiff person's syndrome. My neuro also treats these kind of patients. A neuro that specializes in autoimmune neuromuscular disease and seizure disorders might be a good type doctor to see. There are not a lot of them out there though, depends on where you live. If your child has something like this it is better to get diagnosed sooner rather then later, as there are some very good treatment options for these type of illnesses. No cures, but there are treatments and it can be managed.

She is part of the "changes" video DINET produced. The link is pinned up above. I'd encourage you to watch it.