arizona girl

Oh your so welcome, but you already had the knowledge you needed and were starting to put the pieces together. You would have figured it out on your own, happy to have helped you find the path quicker. I don't know how on top of their online e-mail they are, so, if you don't hear from them in a week or so, give them a call. If they don't know any one to recommend in your area and your insurance will let you see them, I would trust how they test and diagnosis there. Then hopefully you could get treatment closer to home following their treatment plan for you. A lot of us here have had problems with ER visits, were they try to blame anxiety or pschy. The last time I went, I had a WBC (infection) in the 19,000 and I had the lab work showing I was immune deficient and needed to get on iv antibiotics. Not something you can get done a doctors office. He tried to tell me that sometimes wbc just go up for no reason, what a joke! I should report him. I did get what I needed, but still! Good luck, hope the doors open quickly for you now!

Hi maxine, I sorry your having to deal with all this, but I'm so happy you are finally with health care providers that get your concerns and know how to address them. You have been waiting a really long time to get these things done. You were wise to wait! It is easy to not think about the realities of surgery, when you know there isn't any one you trust to do it yet, but your there and you do have to think about it, because blessing of all blessings you are finally with the right people. Answer to many prayers perhaps? I know we here who have read your posts and supported you, for sure have been praying you make your way to the right people. So still be vigilant, but trust that you wouldn't be where you are if you weren't suppose to be there. How ever it turns out you will be okay. Let us know when procedures are going to happen so we can say some extra prayers for you. xo, ag ps. I can't join face book right now for privacy reasons. So, do check in once in a while. I hope you didn't leave because someone treated you poorly.

And no body told you and put you on a treatment plan? My doctor here in arizona treats a lot of people with it. Some are on oral remittant meds with or without plasmapheresis or IVIG. They have a web site. Google phoenix neurological associates. They have medical info on the site. If you call or e-mail then they may be able to refer you to some one in your area. See your not crazy, stressed by the situation yes, but not crazy. Does that internist know about this medical report? The right kind of neurologist should be able to treat you. As far as your pain meds until then, do you have any pain doctors on your plan. Many regular doctors are moving away from treating pain and sending their patients to doctors who specialize in pain management. I've met a few cipd patients, during my treatments, that is why I sort of recognized the symptoms you posted. I only reply to post that are within my circle of personal knowledge and experience. Good luck to you now, you are empowered with the knowledge you need to get the right treatment. Your son can only benefit and get treated sooner then you did, if this is genetic. I pray the path to the right doctor goes smoothly and the door opens quickly for you and the long journey to treatment is at hand.

Well your sort of missing it. Large fiber nerves are mostly your motor nerves, allow you to move, etc. Small fiber nerves are the ones that control your autonomic function as well as the more commonly known nerves that cause painful neuropathies. So if you've had tests that show abnormal emg large fiber and you've had tests that show small fiber damage then that is polyneuropathy. So no the small fiber nerves don't damage the large fiber nerves, something else, your trigger cause is causing damage to both kinds of nerves, most likely autoimmunity or genetics. If you are progessively getting worse, moving slow or fast, that is classic CIPD. I don't know what your son is sick from, but there may be a genetic base here, since you are sick as well. Not sure what tests you've had for the sfn, but skin biopsy is the best one, though the others can show damage too. Skin biopsy will actually show how much nerve loss you have had. If you can find a neuro that does that test, then you've got a neuro who probably treats autoimmune neuropathies like CIPD, MS, etc. Honestly, if your internist is trying to pigeon hole you like that, he is working against you. I don't know if I would go back to him, can you find someone else? I understand the $$$ issues, which is why, if you can stay in network and local better for you. Do some research and see if anyone near you treats polyneuropathies, one of those treatments is IVIG, if they are using that you are in the right spot. Not every state has these type of doctors though. I'm lucky to have one here, but I went through some pretty rotten stuff to get to him and even though I'm in the right spot, I've still had set backs with treatment. He and I laughed about SFN being considered a rare condition. He said it is more common then people realize. I laughed and said yes, "it's not rare, just rarely diagnosed.".

The mayo jacksonville. A forum member Erica in Orlando sees someone there. I think a neuro. She isn't active right now, but might respond to a pm if you send her one. You could review her posts and see if she mentions his name. I can't remember if she did or not.

Hi, victoria. Does your health plan allow you to choose the doctors you go to or are you being forced by referral? Do you have copies of all your medical records, including doctor's notes from the doctor who is challenging your pain treatment? Is that doctor the one who is sending you to the teaching hospital? The reason I ask is that we have had a few forum members who's doctors tried to treat them like psych patients and were treated in such harmful ways by these care givers. One ended up having stiff persons syndrome and by the grace of god is being treated at mayo in jacksonville. If you sense your doctors are going down that path, you have to be really careful who they send you to. Knowing everything in your medical record is really important. Depending on your insurance plan, you usually can go out of state and still be in network. If you can self refer, don't have a doctor your concerned about refer you. Take your copies and make the appointment yourself to the new doctor. It may be time for you to change internists and start fresh. Also hydrocodone can be addictive and he may be thinking you are drug seeking even if you are not. I agree a pain doctor that specializes in neuropathy or a neurologist who specializes in neuromuscular neuropathy are a better fit. I noticed you said you have some motor or large fiber neuropathy and the small fiber neuropathy, is that right? If you have tests that show both, you may have a polyneuropathy, the most common is CIPD and there are FDA approved treatments for it. Try googling that and see if the symptom of CIPD match yours. Hope this helps, you have the right morally and legally to direct your own health care. Hope I was able to help.

Yes, I have it, it is primarily hitting my autonomic nerves, thus my pots and orthostatic hypertension w/syncope. Most first think peripheral neuropathy (burining/numbness of the feet and legs), but it effects the autonomic nerves too, like cardiac, gastro, temperature, sweating and the nerves that contract the blood vessels on standing. Mine was by skin biopsy, but Qsart also is diagnostic for it too. I told dr. Grubb about my SFN, it factored into his diagnosis and he had my catecholamines both resting and standing done, which showed a big jump in norepinpherine on standing. Norepi also contracts the blood vessels on standing, kind of like a back up system when the nerves in your vessels fail to do it. That then causes the standing hypertension. He put me on labetalol 100mg (low dose) short acting, cause I also drop when I lay down. He didn't disagree with my neuro treating me with IVIG, and since then we found out I have low immunity which my insurance will pay for. If you just have small fiber nerve damage IVIG is off label, but if any of your large fiber nerves are involved too, then it is approved, by most insurance. I think he will try to treat the symptoms HR/BP with his list of drugs, which is better then nothing. But, pots and SFN can be called secondary symptoms when caused by another underlying condition. It is important to rule out all secondary causes, because treatments vary depending on what the cause is, and in not treating the cause, you may become sicker. Which is what happened to me.

I've been on and off glucophage and the generic form metformin for years. I had pcos with very high insulin. On my first year I lost 25 pounds without trying. I needed to loose it after putting on the weight from taking dexamethsone (steriod) when they first thought I had mixed connective tissue disease. I seem to have more digestive issues with the generic metformin and had to stop taking it when my colon ruptured. I once again gained weight after starting my IVIG carimune brand it had 2% sucrose, and I was also given dexadron to stop any reaction, I'm now on privigen, no sucrose. My weight gain and disrupted metabolic systems always seem to be medication induced. FYI for any of you starting something new and gaining weight without a change in your diet. Any way there is a new form of glucophage/metformin called glumetza which is supposed to be easier to tolerate. I'm now up to 1,000 mg a day and I am tolerating it very well. To soon for weight loss, but I'm hopeful that will happen again as well. Glumetza is coated and time released. So there is a new option for those of us who are sensitive.

Hi anna, from my own personal medical history I know there is a link. It has been proven by my doctors by skin biopsy and by blood work. I had positive ANA for years treated me as lupus patient didn't get better, rheumy's were never able to define the underlying autoimmunity. Years later the pots symptoms became so apparent that TTT was done proving the autonomic dysfunction. That led to a neurologist who tests for autoimmune neuropathies, beyond large fiber nerves. Skin biopsy proved small fiber autoimmune autonomic neuropathy. While treating for that the immune deficiency was unmasked. Total Quantitative Immunoglobulins were tested and I had no IGM and very low IGG. Diagnosis of hypogammaglobulinemia or CVID a PID was made. So there you have it an autoimmune illness with low immunity. As research suggest they tend to go together. I was lucky thanks to dinet, and my current neuro who knows how to diagnosis small fiber neuropathy. I had no idea I should see a neuro, no one ever suggested it, I didn't even know there were neuropathic autoimmunities. I'm about 9 months into treatment with IVIG. We've also been treating with antibiotics, as I have had undiagnosed infections all along as well. You don't get much of a fever, if one at all when you get an infection and you have low immunity. Which means you have to get pretty sick before someone recognizes you have an infection brewing. I've posted about this a bit, if you click on my name, you can see the posts I've made in that last year. BTW if your looking for a doctor to diagnosis, look for a Neuro who specializes in neuromuscular autoimmune neuropathies, it is a subspecialty and there are not a lot of them and/or an immunologist who treats low immunity with IVIG.

My cuff errors, when I am fluctuating. Mine swings with posture change. If I take it to quick after changing positions it errors. Especially on bad days. So, I wait a bit and take it again, and I'll get a reading with out the error.

Hi, sorry, but he isn't at the Cleveland Clinic, he is the University of Toledo medical center in Toledo. It is a few a few hours drive from cleveland clinic. I saw him he is good. He is a cardiologist that is aware there can be non cardio causes for pots. I haven't been back because of the expense to get there, but he got me on the right track and sent info to my cardio. My primary treating doctor though is a neurologist who specializes in autoimmune neuromuscular disease and immune deficiency. As that is the cause of my pots. He was aware of my positive skin biopsy and did agree with that diagnosis. He put me on labetalol and alpha/beta as I am one of those that swings high to low with BP/HR and I get occasional presyncope collaspes. He didn't do any further tests while I was there, but asked the my local doctor do the supine/standing catecholamine blood test. Which confirmed I believe that I was hyperandregenic or a swinger. I triple my norepinephrine on standing. Hint they won't make an appointment until they have your medical records, even though they may not look at them until your actual appointment. Once they have them, call them for your appointment, there will be a long wait, but if you can check in and see if he has had an opening sooner. That is what happened for me, and my appointment was moved up. You know timing is everything. Also his wife is ill brain tumor it's been several years already, her health could effect his schedule.

Oh thank you for the complement. When I said my skills were rusty, I meant that, I have been out of the work force for a least 15 years. I don't even have a stale resume at this point. I had at least 3 typos in my post. I would have to bone up on everything. I don't think I meet the qualifications Michelle is looking for. I could though with some direction help out part time. Also when I was involved with 20/30 we were a fairly large group and it took all of us to pull an event off. We were pretty good fund raisers though raising over $500,000 over the many years. I also have a another personal mission which is to get the arizona medical board to become more consumer oriented, putting the patients first and not the doctors. I hope the changes will go national. From the many stories that have been posted on this forum we are not being properly protected. The cardio that abused me and 25 other women in arizona had six complaints against him at the board and nothing was done until he got arrested red handed during a pace maker procedure. He was indicted and is waiting to stand trial it has been two years already. We have been asked to do nothing to make the case more difficult, so we haven't been able to make waves yet. By divine appointment I met two of the other victims and we all feel we were left unprotected and that change is order. Once the case is over I think we will all make a powerful group of women. So, I also need to be free to move on this issue when the time is right. So I'm open to how I can help as well!

Hi all who put us on the list. I'm not a facebook member so I can't vote. I was able to see our voting page though. It doesn't say anything about us other then name and address. Can one of the forum moderators see if we can get more info up. It may be too late for this year, we only have 7 votes so far. As I've thought about the how we keep this wonderful, informative and empowering web site going and how to fund and manage it, sponsorships from our associated research hospitals and these type of charity development groups like chase's is another way to go without charging fees to join. I agree with issie a lot of people wouldn't even look at the forum if there was a fee. I know I'm guilty of note donating the last time Michelle put the call out, she didn't ask for more so I thought we had met our expenses for this year. If we have the funds though we have options to take this on from Michele I do have some experience with 501c3 as I was a founding member of the 3rd female chapter of Active 20/30 an international service organization. It was designed to allow men initially in that age group to give to childrens charities while also creating an opportunity for professional and social connections. I am experienced in fundraising events, because that is what we did. They were for the most part local. Since we are pretty much global while being based in the USA. (Yea USA BTW, bin ladin and hopefully the decade of death are over!) So that would take some thinking on how to raise funds through a charity event. The immune deficiency foundation (IDF), the think Zebra campaign! Might be a group we could immulate. I too would be willing to donate my time to dinet. The last year was rough health wise, I'm doing better now and I think this is something I could do part time. I do have computer skills that are a bit rusty, but I'm a quick learner. I had be thinking of taking a web development class at the local college, so I don't have the necessary web skills yet. My nephew though is at one of the best IT colleges at Central Florida university. It is always possible to consider having him or his school make us one of their for credit projects. He has a big social heart. Well that's what I'm thinking, not sure how to move forward from here. Input is welcome!

Hi pandy, aren't you the one who is already getting IVIG for your low immune system? I am getting it too! Getting lots of infections is what happens with this condition. IVIG helps with the infection rate, but you still need treat any infection that comes along with the appropriate meds. Yes it can cause symptoms of dysautonomia, as it is also associated with companion autoimmune illnesses. I have small fiber autonomic autoimmune neuropathy causing my orthostatic intolerances, but you can have anemia or several other autoimmune illnesses doing the same thing. I was told by my doctor that all infections need to be treated quickly and agressively because with a weak immune system you can die from an untreated infection. BTW how are those treatments going for you. I've had some side effects and they had to switch products on me because of that. I'm now on privigen, carrimune was awful for me and raised my blood glucose because it had 2% sucrose. My metabolic profile is now starting to improve, but I haven't lost the weight I gained. The headaches were terrible and I've only had one bad one since the switch, when I was infused when my menstrual cycle was starting. So, now we will move my infusion the next time that is going to happen. Good to see you back!

I would include them. Dr. Grubb looks at all causes and endocrine issues can cause pots symptoms. FYI though you send your records ahead of your appointment and probably won't look at them until you are there. He is a sweetie, he still is seeing patients even though he had a bout with kidney cancer I think and his wife has a brain tumor, which sounds like is acting up again. I know it takes a while to get in with him, but his personal circumstances could effect appointments. Also he didn't do any additional testing on me, went over records and suggested my cardio run a supine/standing catecholamine test, which proved I was pumping out massive amounts of norepi on standing, he also prescribed labetalol. If you haven't had a Tilt Table done yet, he does do them and I would have wanted him to do mine had it not be done already. You don't want to do more then one unless you have to. If you need one make sure you arrange ahead of time and ask them to schedule that for when you are there. BTW if you are one of those that goes up when standing producing extra norepi is another way the body gets blood back up to the brain. Abnormal amounts of any hormone can mess up your other ones. Also, it can be hard to get follow-up long distance from them. They will however send you a card reminding you to make your annual follow-up. I choose not to spend the money to go back from where I live, even though I would have liked to have seen him again. Good luck!

Hi guys, I had my infusions this week so haven't been up to replying. For those of you who suspect or have had low immunglobulins. The doctors that would be able to diagnosis are neurologists who treat autoimmune neuropathy, some hematologists and allergy/immunologists. This is a sub specialty in all these specialties, so you have to call and ask if they treat and test for this, if they are treating a fair amount of patients with IVIG infusions, those are the best ones to go to as they are more familiar with how to treat and manage. The umbrella name for the many immune deficiencies is "primary immune deficiencies", there are quite a few of them, so you need to see where you fit, the most common is CVID common variable immune deficiency or hypogammaglobulinemia which is what I have. My IGG and IGM were very low and have probably bounced around for years. There is the IDF website and several other under primary immune def. web sites if you want to read more, google it! They are actually having a patient oriented conference here in scottsdale, arizona in June, if anyone is interested. The main tests are a Total Quantitative immunoglobulin (igg, iga, igm), sub igg panel, ig d, e and vaccine challenge testing. If your immune deficient and medication reasons for causing it are ruled out immunoglobulin replacement will help your body fight off infection better. If you get a lot of different types of colds, flu, infections, female or gi infections or low grade fevers or feeling poorly without signs of a good fever, checking your immune systems is important. When you don't have an effective immune system you can't mount a proper fever when you are sick, ie, my colon ruptured wbc in the 20's highest my fever got was 100.4, when I'm sick mostly it is in the 99's and it goes up and down in as little as 15 minutes Other autoimmune disease are also common companions of cvid's etc. ie, my autoimmune small fiber neuropathy. There are also other ig testing that is done for specific diseases these are different tests then the total QI test, don't assume all ig tests are created equal. Hope this helps. Funny about Scottsdale Mayo, (I live here) I'm out there right now to tie up the loose end cross specialty issues that come with cvid. I will be seeing someone in immunology about all this because of my infection rate and to test for food allergies before they do my gi work up. I'll let you know how that goes, I see on their website their primary immune center is in rochester, but there are two docs here one who looks like he at least is familiar with it. BTW what where your immunoglobulin levels and fyi cardio docs will know nothing about TQI and how they may relate to Orthostatic intolerance of the BP/HR especially those of us who swing. Many illnesses outside or cardiology can cause this to happen, the cardio's will try to treat these symptoms, but if it is being caused by noncardio reasons it is just a band aide while you get sicker.

First an abnormal tilt table test, then referral to a neurologist who specializes in autoimmune neuromuscular illnesses. He did a number of test on me, but it was the skin biopsy they did that diagnosed the small fiber neuropathy. I was treated with plasmapheresis which improved my HR/BP confirming that it was autoimmune in nature. During that time I got anemia and further blood work showed the immune deficiency which is then treated with IVIG. Treatment is a work in process and not with out set backs and adjustments, but I think it is the right course and should keep me from dying from an undiagnosed infection, which happens with this condition. The IVIG in theory should help the small fiber damage, but this part is still in the research stages. It does help other forms of autoimmune neuropathy like polyneuropathy, ms, stiff persons these are all fda approved for this kind of treatment. How were you diagnosed?

Hi guys this has been happening to me to for the last few years. I would get low grade fevers in the afternoon or when I would talk on the phone, I would lay down and they would go away. Then my colon ruptured and the highest my fever got was 100.4 with a flaming infection. Fast forward to this last year and I was finally diagnosed with the primary immune deficiency CVID (common variable immune deficiency). Also over the last year the low grade fevers started matching up with mild to high elevations in my white blood count. I'd been tested for many auto immune diseases over the years, but never a deficiency. When you have an impaired immune system you can't mount a normal fever when you have an infection. So even though you feel really sick you won't have the normal signs of infection with a good healthy fever that you body uses to fight the infection. I would have pain, fatigue and night sweats, but without a robust fever no one thinks your sick until something bad happens like a colon rupture. Does that make sense? Anyway I also have positive titers for the cytomegalo and HV66 viruses which are also associated with the epstein barr which is normal in me. So there my be some other viruses to look for. CVID is also associated with companion auto immune illness. I have the autoimmune small fiber neuropathy which attacks my autonomic functions. These kind of issues do cause pots symptoms and may be the underlying cause. While there are other causes for pots, if you find that you feel like you are always fighting something off, it couldn't hurt have your immune system tested. I am getting immunoglobluin replacement infusions, but we are still trying to put down the infection. I just went to mayo and will be seeing their infectious disease hopefully soon. Though of course this week my WBC was normal for the first time in 6 months, so maybe the infusions are starting to take hold. If you want to know what tests I had done let me know.

good article issie, I know I almost triple on standing. It will be interesting to see where this goes.

Never fun being in the hospital, hope you continue to improve. Whenever I hear sick a lot, I wonder has this person been tested for a primary immune deficiency? After years of being tested for the basics and many autoimmune conditions, that all were normal except a positive ANA. I was finally diagnosed with an autoimmune small fiber autonomic neuropathy by a neurologist, not a rheumy. During treatment for that is when they finally caught that I was immune deficient, specifically common variable Immune deficiency CVID. I can now look back and see that I had mild symptoms of infection, I would feel terrible like you get right before the flu, alot of gi pain and muscle spasms, but my fevers were mild to none, until the infections got pretty bad, like my colon popping. I'm still fighting some kind of infection that antibiotics aren't working to clear, so I'm waiting to see infectious disease at mayo, it may be viral or fungal, taking forever to get seen, unless in the hospital hard to get a consult on this one, inspite of referral from my neuro. I am treating with IVIG, it helps your immune system fight, but you still need other meds if you already have an infection on board. Any way the reason I bring this up is that if you are immune deficient a simple illness like the flu can make you so sick you don't survive. It sounds like you were pretty ill this time around. Mack's mom mentioned it to you in an earlier post about the ivig. If this might be something you want to rule out, the goldstandard test is called a "Total quantitative immunoglobulin. There are other associated tests as sub igg panel, vaccine challenge and IGd and e. You can also google any of these terms to read more there is a lot of info. Until I got diagnosed it was anywhere on my radar, but does fit my history pretty well. My HR/BP also always get worse when there is an infection on board. Hope this helps you and that you feel better soon.

Hey jana, my pm box was full. I deleted a few so there is room for a new one. I really wish they'd let you have more then 50, it ends up being only 25 sends and 25 receives. So pm when you get a chance, dani thought it would be great too, if you joined us. Yes, julie it would be great for you to join us, non of us travel to well though do we. If you ever come to visit the grand canyon state, look us up. We have a gorgeous state to explore.

Hi, Jana, There are lots of different types of IGA tests that can be disease specific. What type of IGA test was it? If you think something is up with your immune system the global test to check your immune system is the Total Quantitative Immunoglobulins, the sub IGG panel, IGD and IGE. If you suspect you may have autoimmune illness going on and considering you already have SFN, which can be autoimmune, getting the tests I mentioned done might be helpful in decerning cause for you. Dr. Levine or anyone at Phoenix Neurological tests for many of the less well known autoimmune illness. He diagnosed and treats several patients that have Stiff persons syndrome, which our erica in orlando was finally diagnosed with. Hematologists can also test for autoimmune disorders of the blood, with the albumin being low you might want to look into that. So, why were you in the hospital? BTW Dani and I are going to try to meet for coffee or lunch one of these days, she's not driving so it will be somewhere in central chandler, love for you to join us if your up for it. My treatments have been helping, but I'm waiting now for a referral to infectitious disease, because I've been harbouring some time of bacterial, fungal or viral infectition that we haven't been able to kick with antibiotics. I think the IVIG has helped keep me from getting super sick, when we get the infection under control, I think the IVIG will be even more effectitive, my heart rate is so much better, and my blood pressure isn't swinging as wildly, but I'm still getting hypertensive on standing and talking. Hope you get to effective treatment soon, like erica in orlando it's been a long road for you.

Has your wife's "quantitative immunoglobulins" been tested yet. There are also the sub Iggs and vaccine challenges that diagnosis this. Your wife may have a primary immune deficiency. I have common variable immune deficiency. It very commonly associated with a higher risk for lymphomas and leukemia's and there very frequently is some other kind of autoimmune disease as a companion. Your wife's thyroid issues are considered autoimmune. In my case it is autoimmune small fiber autonomic neuropathy. This type of neuropathy controls all autonomic functions, including body tempertature and heart rate. The gold standard test for this is a skin biopsy and/or a qsart test. If she already had low immuno's then she would have gotten worse when she started chemo as it further supresses the immune systems. I have had roaring infections with little to no fever and an elevated white blood count and have fevers with normal WBC and a rip roaring female infection. If she is low there is a treatment that is called IVIG it is an infusion that replaces the missing or defective immunoglobulins. They are also doing trials using IVIG to support the cancer treatments. You can google Primary immune or Immune deficiency foundation. Hopefully you have copies of all the lab work and tests she has had done, read through them and see if you can find a "Quantitative Immunoglobulin" it should show the levels for IGA, IGG, and IGM. If she is close to the low side on any of these, then she probably drops below normal anytime her body is trying to fight something off. This is a test for the total immuno's, you may see tests that look for high titers of immuno's for specific diseases as well, those being normal doesn't for a particular illness dosen't rule out a defect or illness that they haven't checked for yet. Hope this helps!

He has had all the cardiovascular and renal utltrasound that shows no defects in those areas, right? The abnormal tilt was the main finding? His symptoms do sound like an autoimmune autonomic neuropathy. Has he had screening for small fiber nerve damage yet (those are the autonomic nerves)? A skin biopsy and qsart test can show if there is damage to those nerves. His large fiber nerves have been tested and he has had CT of the brain to rule out MS? Also does he get sick with infections or feel sick and not have a real fever but is hot to the touch? I' m not sure where you live, but not all neurologist are the same. The type of neurologist that is the best for this type of screening is one who specializes in autoimmune neuromuscular illnesses. A good one can rule out many rare conditions that aren't commonly thought of. More often then not Pots is not an end diagnosis, but can be caused by many illness. The fact that he goes up on standing and is sensitive to many stimuli, point to the need to look deeper. If you haven't taken the time yet go to dinet's main page and read under mechanisms and causes, you will see many different reasons you can have pots symptoms. Read through the and see if any fit your son. Improvement can come if the right cause is found. Something like anemia can be treated and cured, other conditions are life long but can be managed. If your any where near the west or southwest USA, we have several doctors that can do the right screening or may be able to refer you to someone in your area. You are right to keep pushing for better answers, and if that takes seeing new doctors, then don't feel bad about needing to do so. You are doing the right thing for your child. There is also dynakids website, you can look at too. There are a lot of parents on here with kids the same age as yours. So you should get lots of suppport here. If you'd like some doctors names, just ask.

Yes you are right about the autoimmune association. The specialties that screen for autoimmune illness are hematologists, rheumatologists, and "neurologists, that treat patients with autoimmune neuromuscular neuropathies". Immunologists can also look for primary immune disease by screening immunogolbulins like Igg, iga, igm and sub-igg panel. Your C4 can be part of that work up with an immuno doc or a hemo doc. If you search my forum name and small fiber neuropathy, dr. levine, or common variable immune defeciency you can read what I was tested for and how I'm being treated. I was diagnosed by skin biopsy with autoimmune small fiber autonomic neuropathy, then we found the CVID, which is most likely genetic and I was probably born with it. People with immune defecincy almost always have some other companion autoimmune disease with it. They treat me with the immune replacement IVIG, and antibiotics for the hard to see infections that I get. When you don't have an immune system that works right your body can't mount a proper defense so you don't get overt symptoms until the infection has progressed further, you just feel like crap. The neuropathy also causes an increase in catchocolamines like norepinephrine upon standing, that in turn can mess up your endocrine system causing metabolic syndrome. There is a lot of info here on the forum and in the main dinet web -page under mechanism and causes. I encourage you to read up and not just wait for someone to answer your question. Those main pages that list all the possiblities is what helped me know which one fit me and what to get tested for. I wish you well on your journey to health and hope you get treatment sooner rather then later. Don't give up and keep pushing the docs till you are satisfied, you know what you have.