arizona girl

Oh Jen, I had concerns about what type of IVIG they were giving you because of your IGA. I looked up the products and there are several that start with gamma, so I couldn't figure out which one you were on. But several of them that start with gamma had IGA in them, which would be a no-no for you. Do you know if they checked to see if you had or have IGA antibodies? Please look up IGA deficiency, it is one of the primary immune deficiencies and is categorized by itself. People with this type have to be handled differently when it comes to ivig. Was this a neuro prescibing? If it was he may not have been up on all the different forms primary immunes come in, as an immunologist would, like the one you are seeing at home. Ask that doctor about the IGA stuff he should know, and get your labs to see if it was done before they started infusing you. They still may be able to check for the antibodies, but you usually have to be off ivig 3 months to have clean lab results, that are not being influenced by infusion. That mayo doc sure sounded blase about the ivig, he is full of it!!!! Any patient can or may have adverse reactions, kidney failure and get aspectic menegitis from it. Of course it is a blood product, and you could get something from it, but the USA products are very carefully cleaned and monitored for safety, so I wouldn't worry about that so much. I did have the opportunity to research ivig before starting it, and decided to go forward after that. The first kind was awful, but not like your reactions. Privigen has been wonderful, with just minor side effects. Are they giving you anything to treat the reaction? The only good thing is that it does seem that your stay at mayo did stop the progression of organ failure, or they wouldn't have let you home. Do you trust your local immunologist who shut this down? He might be a good resource for you to talk with, about what is next. Depending on what you find out I would make a complaint to mayo about this. They have a whole department that handles patient relations, they should be told about this. That neuro was arrogant to keep insisting on treatment, when you were obviously reacting. If you were you should have also been on pre-meds and added iv benedryl and decadron, to buffer any reaction. Issie, is right the other option might be plasmapheresis. I did that first, and my autonomic functions corrected. A lady I met at the hosptial had polyneuropathy had been getting it for 25 years. She had tried IVIG and it didn't work for her. So you may look into that. They have to insert a catheter and you have to watch for infection with that and also anemia, both of which happened to me. The pheresis itself though is very easy, once they implant your catheter, they just hook you up and they can also draw your blood for labs before starting each treatment so you don't have to get stuck. That was a nice up side for me. If I can help in any way let me know. I'm so sorry this was handled so poorly for you. Also you should be wearing a helmet so you don't get another concussion.

Hi, I have metabolic syndrome/pcos and my glucose is rarely elevated. When it is it is usually a medication triggering it. That being said. You can have pre-diabetes if you are insullin resistant or hyperinsulinemic and it cause many problems like diabetes. Look up hyperinsulinemia, if you want more info. I have it and it is what caused the pcos/metabolic syndrome. Your docs need to test your fasting insulin. Easy blood test. To dig in deeper they need to order a 3 hr glucose tolerance test and side by side insulin tolerance test. They need to be measured together. My glucose was normal through out the test, but my insulin was grossly abnomal. The good news is that it can be treated with glucophage/glumetza, low glycemic diet and exercise. I can't get the excercise in but the glumetza, which is easier on the stomach, but more expensive has improved my blood work and I am loosing weight again. I also lost weight on glucophage. Of course the discoloration as mentioned by others could also be adrenal, so get that test you said to make sure. I had it and it the gtt/itt or easy. They just take longer. Good luck! I know it is scary waiting to hear, but it is also freeing and a relief to put a name to something you already know is wrong. After all you wouldn't be seeking medical care if you had no symptoms and you felt well. Knowlege gives you some sense that you have some power to control your circumstances, it is also validating when they finally diagnosis you.

Yes go to daily strength cvid support group room. Cvid - Common variable immune deficiency is another name for hypogammaglobulinemia. There are several forms of primary immune defiencies that are treated with ivig. There are other autoimmune type disease of a variety that are also treated with IVIG. type of im def you have may determine what type of ivig product you get. There are about 10 on the market. I had to switch from the one I was on because it had glucose in it, and I'm pre-diabetic. Low IGA people must watch what product they take as well. You can also read up on the different im def's at primary immune.org. I've not joined the cvid group, but you can easily read their posts. They have a lot of good insight and links to other support pages. That info really helped me when I started on the ivig. Good Luck!

Hi Jen, hope your holding up, until you get better answers. I've read a few of your posts hopefuly I'm remembering this right and they were yours, about the immune defeciency with low iga and igg and now the polyconal gammopathy. I can see why your doctors are waiting for the rest of the labs, the pg points to other types of testing. As far as the fevers I can relate and may have an answer on that. When you are immune defecient you don't have a normal defense system to fight stuff off, a fever is a defense system to kill off invading bugs/bacteria. When you don't have immunogolbulins you can't mount a normal fever and thus can't fight off the infections. It also possible that the high fever you had damaged your nerves that control temperature. Do you often get overheated and/or chilled easily? That would show some nerve damage. When my colon ruptured the highest my fever got was 100.1, with a raging infection/pertinitis and wbc in the 20,000. My temperature is usually lower too, and I feel like I have a fever at 99.0. I was getting these really low grade fevers in the afternoons, or when talking on the phone, regularly for years, that would go away as soon as I laid down. I have low igg and igms. Since having had a lot of antibiotics in the last few years and then starting the ivig, I've had none of these type of fevers and my wbc has been normal for the last six months. My BP/HR are improving too! I still have pain and discomfort on standing or in uncontolled temperature environments, mostly with hot air. If you are the one with the low IGA, you my not be able to have an IGA ivig product, I think. You have to been very careful what they give you. You can read about the different types of immune diffeciency at primaryimmune.org. Do you know yet what brand they are giving you? Hope I got your info right I'm still pooped from the holidays and have been to tired to post and reread posts.

Hi autonomic neuropathy is a form of small fiber neuropathy as is perpherial neuropathy. There are several types of small fiber nerves that can be damaged. My doctore has both autonomic and small fiber stated sepearately in my medical record. I'm guessing to differentiate the type of symptoms I'm dealing with.

Wow, thats interesting. I do know that there is an autoimmune condition that effects the blood, that they can use IVIG to treat. IVIG can be used to treat a lot of things. Have you talked to the doctors about the change and your chronic low ferritin, a form of anemia which can also cause high heart rate I think. Also, if your gi tract has nerve damage, it could have effected your ability to absorb the iron. Are you sure they didn't give you an iron infusion. I had to have 3 when I got anemic and it corrected it. Did anyone ever check to see if you were losing blood some where in your body the last few years? The sores I don't think that is a common side effect but it was listed under one of the IVIG product lists of side effects. You might want to ask about an antiviral for that, I think they even have oral mouth washes they can give you to help with the pain. What brand of IVIG are they giving you? Do you get a lot of infections of any kind, or colds, or feel like you are fighting something off, or feel like you have a fever, but don't really have one or a only have a low one when you check? If you do you might want to ask them if they checked you for an immune defiecency before starting IVIG. They may have checked your total quantitative immunoglobulins, if they were low then you might have that. It can be found together with these autoimmune conditions. BTW, you can ask the nurse to give you copies of all the labs they have done so far. Read your medical records yourself, the info is empowering.

Hi jen, I can't imagine being in that environment that long, you are a trooper. I hope you were able to read my earlier post in reply to your questions about your ivig infusions and what to do and ask, before your actual infusion. I wouldn't expect you would feel great during these initial treatments and the headache is very common. It's a heck of a headache though. You are on a real aggressive treatment plan, considering your rapid decline, it was the right course I think. I think their goal was to stop the progression, if that has happened then the ivig did work. As far as turning around the autonomic symptoms. Not counting the time I was on carimune(ivig), bad reaction to it. I've been on privigen a year and started noticing changes in my heart rate at around 9 months. I get the orthostatic hypertension, I pump out a lot of norepi, to compensate. I'm still getting some pretty high BP's, but my supine BP has improved. I used to get hypotensive in my sleep. We had first done plasmapheresis and my bp/hr normalized quickly during that. That is how we knew my issues are autoimmune in nature. I wasn't sure IVIG was working, because I'd expected the same response as the pheresis. It has taken longer but it is working. So, don't give up on it yet. You were smart though to trust how you were feeing about the mesitonin. I think they thru the whole pie at you, which then makes it hard to tell what is really working and what isn't and whats causing unwanted side effects. If I have a say I try to introduce one thing at a time. Not, something that was in your control this time, but in the future. You never mention family/friends! I'm praying you have a good support system around you when you go home. Hope you have someone that can stay with you! I think it is natural to be scared about handling all this at home, especially if your home alone. You are entiled to have home healthcare assistance, make sure the hospital arranges for it before they release you. Stay in touch here and let us know how it goes. Here to help, just ask your questions and the members will do their best to point you in the right direction.

Hi, ruby, I have aetna and had united healthcare before that. I infused at infusion center and it all had to be preauthorized the IVIG and the infusion center. Annually, the insurance requires reauth. I just got approved for 2012, then my docs office added auth for home health at my request. I'd double check with both the infusion center and the specialist who ordered it, there staffs usually do all the paperwork for you, the insurance companies usually try to challenge this type of treatment. So in a nutshell, at the expense of these type of treatments, I really doubt they will schedule for infusion without all the insurance paperwork being in place. You should also get some kind of notification from your insurance company. You might want to ask your insurance to assign you a case manager to help you. Ask your doctor what brand of IVIG and how much they are prescribing for you. I get 500mg which has to be infused over two days. Also ask what diagnostic codes they are using to diagnosis and order treatment for. You should know all those things before they start you. Good luck and remember to follow the tips I gave you, so you have a good infusion experience.

Maiysa, Please report this doctor as soon as you can to your local state medical board and I agree to the owner's of the clinic. The way he treated you was unprofessional at the least and may have violated the law. Who knows he may not even be a properly licensed doctor. Please check his credentials at the state board. You can use "ratemd's" to look him up. If he is listed there, at the top of the webpage is a link to the medical board he is licensed through. You may also review him at ratemds as well. As long as it is the truth, you can post a review. Read the rules of the the website though before posting. When these things happen to us we tend to think we are the only one it is happening to. The truth is that the doctor is probably treating many this way. I can speak to this as I thought I was alone when my cardio manhandled me during an appointment. I told the rehab person what had happened and didn't officially report it, I was new to the practice and was afraid they would think I was crazy. Well 2 months later he was arrested doing it after putting in a pacemaker. After it was reported on the news 25 other women came forward, and he already had several complaints at the medical board and the office staff was aware he was a problem. We are never as alone as we think we are. Bad behaviour predicts future bad behaviour, if we don't speak up it more will be harmed. Whats that saying the only way for evil to prospure is for good men to stand by and do nothing. I'm so sorry this happened to you, be strong!!

Thanks Rachel and Thankful for asking me. Thankful already e-mailed me about the newsletter. I've done small ones using the old version of publisher, but I don't have or know adobe design. Not that I couldn't learn it. What I do know is putting together a newsletter takes time and my skills are rusty, so it would be a lot to take on the full responsibility for that. I don't want to get in over my head, with the legal stuff still pending. The trial is in March, if doesn't get moved again. I did see you posted about someone doing a dinet page for small fiber neuropathy. If no one has stepped up on that, I could work on that. I could also ask my neuro if he'd like to contribute to it. He had already said okay to listing in the doctors list. I haven't done that yet either. After the holidays I should have a bit more time, for some smaller projects. I think I am going to try and take, some cpu classes at the community college up the street next semester. So, we will see if I can make myself ready for prime time. If I do anything, I do need people to review my stuff, because I don't always see my own errors, when typing. Though I sure see other peoples!!! Why is that! Thanks again for all you guys are doing!

Well I have gi pain and motility issues, not so much nausea. I did drop to 96 pounds in the 1980's at the beginning of all this, but then steriods flared up the metabolic issues and I'm now in the 150s and trying to get the weight off from the carimune and decadron. Wish I was my skinny mini, I used to be, I'm short so 150 is alot. At your weight though you might benefit from the steriod gain, it would help with appetitie and weight gain too. That is way to thin for a grown women. Well the ivig products have vastly improved since back in the day. They have removed the sucrose and a lot of the reactive stuff. Your in the USA right? The product here is very well screened. Carimune was known for side effects and kidney issues and it is being discontinued in favor of safer, better tolerated products. Aspectic menegitis is still possible if infusion rate is too fast, have them go really slow like ddsmom is doing. But, I don't think your going to experience what you witnessed in the past, things have changed for the better. But, your doc is right they will need to monitor you very closely and at your weight you might want to have them add some IV fluids and a stronger pain med then tylenol. Don't forget to hydrate a few days before, during and a few days after. Take extra benedryl and pain meds or what your doc prescribes for a few days after too. I also take zantac. You will be tired and fluey, so try and just rest for a few days during it. I don't get my headache sometimes until the 4th or 5th day post infusion. Remember some of this stuff lowers the BP and being horizonatal does too, so if you are already low, you might need to address that with your doctor too. They do have the subq version of immunoglobulins, but you have to do it every week and stick yourself. Not something I want to do. You need to make sure that they use tape/latex free products when they infuse you, so you don't have that problem. Just be prepared if if doesn't go well in the beginning, they do know what to do and how to treat problems. What's that saying prepare for the worst, hope for the best. It will be a nice gift it you sail through. Also, this type of infusion can be done in the home and can be less expensive then an infusion center. It shouldn't require you be home bound to get it, as there are companies that specialize in just this type of treatment in the home. My insurance Aetna actually, prefers home health, as it is cheaper for them. It does depend on your insurance though and where you live whether the service is available. An hour drive before and after these treatments is a lot, even on good infusion day. I have been driving myself though since the third month, 36 miles each way during the end of am rush hour. Not fun! Well hope it goes well, let us know when you get your first one, so we can keep you in our prayers that day.

Well here's the push on this. Though the IVIG is having an effect on the neuropathy, it was the immune deficiency, hypogammaglobulinemia, which my insurance approved me to be treated with IVIG for. The only neuropathies that are FDA approved in the US is polyneuropathy and the autoimmune one that mayo treats. My neuro thinks both the qsart and the skin biopsy are useful for diagnosing the small fiber. Get both done if you can. He himself has come to the conclusion that autoimmunity and/or hypogamma are defects of the immune system. He treats all of them pretty much the same, adding in supporting meds depending on the disease, ie, MS, stiff persons, polyneuropathy, etc. I might be dealing with a form of lupus and he said even if, I am on top of the other stuff, he didn't see my treatments changing that much, maybe an immune suppressant, and/or mananging symptoms. So, I'm trying to figure out a back door for you, to go around your pots doctors. Are they mainly cardiovascular? Cardio's tend to just try to treat symptoms, not cause. Then your anks is being treated by a rheumy, also who can be rather fixed or old school in treatment options. Though they are starting to use some biologics. My current cardio, now that she knows what I have, has started recognizing my symptoms in some of her patients and has started referring them to my neuro. So, maybe an immunologist might also work for you, not though a common allergist, find someone who does infusion for their patients. Anyway, what I'm coming to understand is that if there is hypogamma or autoimmunity, it is a sign that the immune system is broken. There are a lot of associated autoimmunities connected to hypogamma or CVID. So, that might be true for you. Maybe google IVIG and anks and see what you come up with. If they test your immune system and it is low in those immunoglobulins you would quailify for IVIG and thus get to treat both. I'm like you to, get orthostatic hypertension/HR, with the increase in norepi, that is until I have what I call an episode, like the one you described and I'm kissing the ****** dirt. Thankfully, not often. I like to say I'm the queen of compensation and avoidance. Without realizing it, I was doing things to protect myself. I was able to document low BP when that happens and tilt table reduplicated it. You can check with my neuro's office too, Phoenix Neurological associates and see if they know anyone where you are who does the tests. He specialized in neuromuscular autoimmune disease. If you decide to come to the US, to get to the bottom of it, we can always host you here in arizona, though we've never managed an actually get together, we do have a group of us here, who would support you. Hang in there, don't let it rob you of you Joy!!

Hi, macks mom, Sorry about your MIL. You I wonder if we have this instinct where we recognize similarities without being aware. I grew up with my father doing funny things with his double jointed thumbs. Guess what I married I guy who has double jointed thumbs! Hope your doing good! Interesting how there has been a lot of posts about mcad and ivig lately!

Oh rama, so sorry your dealing with this. Those symptoms sound like what happens to me when my BP suddenly drops. Feels like barf city, sweaty, clamy, ringining ears and you can't get yourself up off the ground. Hope it's just a bug, but you know in your heart already if it's not. I can't believe they don't have IVIG there. You already have the autoimmune stuff going on. Did you ever get a skin biopsy for small fiber neuropathy? Have you ever had you total quantitative immunoglobulins tested? It couldn't hurt to rule those things out. They simply have to be treating patients that have hypogamma with ivig, in any society that is as large as austrailia. If they treat for that, then they may be treating for the other in america FDA approved conditions. More and more of these autoimmune illnesses are going to be approved for it. There are many clinical trials using it and other biologics. One way to track that down would be to go to a specific products web page like privigen's and find out what doctors they are selling to in your area. You are so smart and have been a great resource to so many of us. I hope we can help you now. Let me know if there is any way I can help.

Hi, ruby, Yes you should have someone drive you the first few times, until you know how it will play out for you. I did have a reaction and loose my cookies the first time. The initial ivig (carimune) didn't agree with me. Once I switched to privigen it was like nite and day. Now I only get a mild headache and a bit achey like the flu for a few days. Really mild and well worth it, considering the consequences of not treating at all. Try not to treat the week of and before you menstrual cycle. Your people don't have to stay the whole time, at my infusion center many people are dropped off and picked up. With your diagnosis you really should be on ivig. Make sure they give a steriod like decadron and antihistamine like benedryl (premeds). The benedryl knocks you out so you sleep thru most of it. Also don't forget you may have the option of home health, where they come to your home. Depends on your insurance and where you live. I am switching over to home health in January, because of the drive and on me the benedryl burns when they do the iv injection. I think though the infusion center is the best place until you get used to it, because they can manage any kind of reaction should you have one. Really though give it chance it does get easier as the months go buy, and pretty soon you will notice the boost it gives you and you will notice when it wears off. Also if you are still having a hard time with the first product they give after a few months, ask them to switch you to a different one. Privigen and gammagard are known to have less side effects. Also slow infusion rate to start, it takes longer, but it will be much easier on you. Good luck with all this. I know it is scary, but it will be worth it in the end. Also there is a pretty good support forum at Daily strength, uncer CVID or common variable immune deficiency, another name for hypogamma. You might find some more specific support there.

Rachel, thank you for becoming our new president. From the looks of the forum and website, you are doing a wonderful job. To all the volunteers that have improved dinet's website as it has gone through transition. It is really looking great! Also thanks to all the other volunteers who moderate and do other services for dinet, you are all so wonderful for giving of yourselves. As we all know dinet has been a life saving service for many of us and it is a pleasure to come on to help and be helped! As soon as I'm able, I'd like to volunteer in some way too! Perhaps, I can put together the info on Small fiber neuropathy, that Rachel requested a while back. I was unable to respond and have been off line because a computer virus (have new cpu, now!) and the unexpected pleasure of much family visiting for all the holidays, and the legal issues you all know I've been dealing with, because of the doctors arrest and also being the plantiff in a car accident. Hopefully all will be said and done by the spring and I will have all that stress off the table, so I have more time to give. I wish you all the merriest of christmas and/or the holiday season. Wishing you all much Joy and Goodwill! PS, with the new cpu, I will also have microsoft professional, including the new version of publisher. I do have experience with the old, old version and newsletters, but I will have to wash the rust off those skills, before they are good enough for prime time. But the possibilites are there to contribute in that way too!

Hi Jen, I've been getting IVIG for just over a year. I was diagnosed with an autoimmune small fiber autonomic neuropathy and hypogammaglobluinemia (causes you to not fight infection well). I had infections without robust fevers, so I would feel ill, but not present with the obvious signs of infection, until I was really sick. I didn't have the antibody you tested positive for, but the hypogamma qualifed me for the ivig any way. Dr. Grubb in toledo believes that they will continue to find more antibodies causing this, and that mayo had found 5 already. It is helping both issues though it took a while to show changes in my BP/HR. I have the hyper kind with excessive norephinephrine and high BP/HR on standing, as well as defects in all the other autonomic functions. I believe your doctors are giving you the right treatment and you are where you should be right now, because of your rapid decline. Loss of urine or bowls is a sign that your in trouble. You must have an aggressive form and IVIG is FDA approved for what you have. They are also treating you aggressively right now with the infusion schedule your on, which in your case is the right thing. I'm getting it 2 days in a row once a month. At some point I expect that is where you will be, but it your frequency will be determined by how quickly your symptoms return. It may be every other, 2 wks, 3wks or if you do well longer. You will be able to tell when your body needs it and you will need to let the docs know how quickly your symptoms are returning, so they can tirate it to you. IVIG only stays in the body from 3-4 wks, before it needs to be replaced again. As you probably already realize you will probably need infusions for the rest of your life. Unless of course they come out with some newer treatment. They may also need to add in an immune suppressant of some type. Now for the advice! First, ask what brand of IVIG they are infusing you with. There are many brands and it may take more then one try to find the one that works best for you with the least side effects. I'm on privigen, but had a horrible time with the first one Carimune, as it had 2% glucose in it. Almost all those side effects went away after switching brands, though I haven't lost all the weight I gained. 2nd, Ask how fast they are infusing you. They should always start slow. I'm only at 150 speed right now after a year. Many of the side effects, terrible migraine headaches, aspectic menegitis, fluey, nuasea, etc are from the infusion rate being to high for you. Slower is always better until your body can handle faster. From what I understand you should stay under 200. I was under a 100 in the beginning. They should also be giving something like iv decadron and benadryl to calm any reaction you might have. If you are prediabetic or prone to putting on the pounds, then you might be able to stop the decadron once you get used to the ivig, I'm only on benadryl now along with tylenol and I've been using either a pain patch called flector and/or a muscle relaxer when I get the migraines as they cause neck and cervical spasm. This month post infusion I haven't had the headache yet, but I have a couple of more days to go. I use tylenol or advil, zantac with benadryl at home to try to ward off the headache and ivig flu. Each month I'm getting better at figuring out what combo works best for me. Also hydrate as much as you can. Though in the hospital they probably have you on iv fluids. When you get home hydrate before, during and after. I've been using the smart water as it has electrolytes. Also while you are in the hospital you have full immediate rights and access to your medical records including the doctors notes and lab results. As for them, the nurse can usually give you your labs upon request. If your mobile you can just go down to the medical records department and get copies of the notes. Read everything, it will be very enllightening to see what your doctors are documenting about your case. The knowledge will empower you. If you have any other questions, just ask. I'll do my best to answer them from a patient perspective. I wish the best and pray that they got you to treatment in time to reverse the damage. Hang in there with the headaches and side effects, the long term improvements will be worth it.

I had a scalp biopsy on a lesion that showed lupus scarring alopecia, w/labs that showed a positive ANA, SSA and SM/RNP at the time of the lesion. I have f/u rheumy labs that are still positive ANA and SSA, the SM/RNP's were normal this time. He also tested thyroid antibodies and I had a postive TPO-ab. The results of the lip biopsy for sjogrens are not back yet, I find out next week. I had had a high positive ANA for years that had been negative until the lesion presented. Autonomic dysfunction is a common symptom for many conditions, some not serious and easily correctable some not. That is the hard part of figuring this out, you got to keep looking until you are satisfied you know why it is happening to you. It has taken me decades to figure out what was wrong with me and about 5 years once we found my swinging HR/BP. I'm one of those that goes up on standing and had no idea it was happening, until a doc said do the poor man's tilt at home. The fatigue on standing and always wanting to sit down and feeling awful when I got stuck standing in place, all made sense after that. If it is autoimmune IVIG is a hopeful treatment, but it is very expensive, hard to get insurance to pay for it, and has some side effects that you have to learn to live with, it isn't magic. I am grateful to have the option, as I was getting worse over the years and then a car accident in 07 caused a rapid decline. I've spent a lot of time researching my symptoms, diagnosis and treatments. Thank god for the web and the info available now, everyone seeking here for answers should use it to their full advantage and not just take someone's personal opinion. Doing your own research is an important tool to taking control of your circumstances that bought you to dinet. Good luck and be tenacious!

Hi, albumin and globulins work together has your IG/Ratio the test after alb/glob test on your CBC been off as well? You may want to have your total quantitative immunoglobulins checked. If you are feeling like you are fighting something off, feel like you have a fever, but don't register one or it is low and transient, it can be a sign of an immune defect like CVID. You can have autoimmune autonomic neuropathy associated with that condition.

Hi Lynne, IVIG is approved for the mayo type of dysautonomia. It is not experimental for that form of autoimmune neuropathy. If you google IVIG and FDA you will see all the illnesses that IVIG is approved for, there are a lot, and more coming that are in research protochols currently. It is a approved for polyneuropathy, but not for mono neuropathy, like small fiber, yet! It is considered steriod sparing, as conditions treated with steriods other unwanted illness caused by the steriods. It is already being used for Lupus and insurance if paying for that even though FDA hasn't listed it yet. I get two infusions once a month and my diagnosis code is for hypogammaglobulinemia/cvid. While I do have significant autoimmune autonomic small fiber neuropathy, my large fiber nerves still work, and I had a test for the the one mayo antibody, but not the panel and that came back negative. When I saw Dr. Grubb in toledo, he said that Mayo has found 5 autoantibodies and they will probably continue to find them. He agreed that my neuropathy was autoimmune. I had an infusion yesterday and I am feeling rather good today, I usually feel fluey after infusions. My heart rate and BP have slowly been improving and my pain levels have dropped. Recently, I have finally presented with labs/biopsies suggesting that I have Lupus/sjogrens. So, there is no doubt it is autoimmune at this point. These symptoms and illnesses are all part of an autoimmune and immune defiecency defect and tend to cluster together. IVIG can be difficult to tolerate and it doesn't make you normal again, but it helps with the progression, infection and pain.

Igail, Well he should automatically test your large fiber nerves. If they do them a skin biopsy for small fiber. If you have large fiber they may do muscle biopsy. I don't remember your symptoms so hard to say what else. However, I did do a post after he tested me and I listed everything he did in it. Dr. Todd levine or Phoenix Neurological associates, SFN or small fiber neuropathy should bring it up if you do a search. It's over a year ago. Does your neuromuscular guy treat autoimmune causes? Mind you I had already had a TTT done showing the orthostatic hypertension/tachy and pass out. BTW, I met with him yesterday and we talked about the suspected lupus showing up and how that would effect my treatment plan. He basically said that if it is autoimmune it's autoimmune whether it's lupus, or small fiber neuropathy or many others. My IVIG treatments will remain the same, and perhaps another medication specific to a particular autoimmune symptom may be added. It is looking like more and more of the autoimmune conditions are going to have some form of immunogloublin treatment treating and challenging the defects that cause autoimmunity. FDA just approved one for lupus targeting defective immune b cells.

Hi Dani, I forgot what all your symptoms are. Do you have EDS? If you don't have you been checked yet for autoimmune or small fiber neuropathy yet? With your low blood pressure, it wouldn't hurt. My neuro's office can check for all kinds of rare stuff and does the skin biopsy for sfn, they treat ms, polyneuropathies, etc. They have a variety of ways to treat depending on whats wrong and they don't just treat symptoms, but try to treat cause. They're located in phoenix. Let me know if you want more info or pm me.

When you see the neuro ask for a skin biopsy for small fiber neuropathy. If your sf nerves are damaged it could explain the pots symptoms. Have they checked your standing and supine catecholamines yet? If your going to an endo, then you haven't had a full endocrine work up yet. I would see those doctors now and see what they have to say. Let us know how it goes.

It basically proves the immune deficiency. If you don't produce antibodies to the vaccine then it proves the cvid. He checked your quantitative immunoglobulins and those were low right? If that's the case, that may be all you need to treat it. I can see the reason for not doing it with your family history. Your doctor could note that and request treatment. Ewe I didn't know that was how you had to use it. I haven't bought any yet. I thought I'd be using it in the shower, after washing my hair. Yea, I'm not to kean about the shots either.

Bless your heart, all of us that come here have struggled, but you really have a boat load on your plate. You would think with all the positive findings you've had, you'd be farther alone. I can feel the frustration and I understand it because of been there too. Mine was'nt so obvious so was harder to see, but your stuff is right in the doctors faces. After reading everything you are dealing with multiple complicated issues from multiple specialties, maybe you could find a patient advocate. I myself just hired a patient advocate to help me with mine. It has taken the stress off and she goes to my appointments. You should be at mayo and I see no reason why they wouldn't take you. FYI mayo will diagnose you and send you home and they sometimes do different labs with different ranges, that I would have some one else repeat using standard labs if they come back normal. What stands out to me, is that some of your problems are probably going to be related to your birth injury. They may not resolve. However, if I were you I'd be seeing a geneticist, endocrinologist, a hematologist and a neurology subspecialist that specializes in autoimmune neuromuscular disease. Your rheumy sounds great, stick with him. He should be able to treat any autoimmune rheumy problem.You can also have more then one autoimmune disease, they tend to clump together. Endo, hemo, neuro's and rheumies diagnosis them per persenting symptoms. Some of the other members here can better advise you what to do about mito and mast cell issues. Do a separate posts for those and you should get some good feedback. FYI an emg only tests the large fiber nerves, so you could have a small fiber neuropathy that is diagnosed by skin biopsy. I think you would be in good hands at Phoenix Neurological associates for the neurological end of this. White matter can be MS, which they also treat. They know what to test for and how to treat, including research protochols if you fit one. It can take a few months to get in with them for new patient. Why don't you call and make an appointment with them for december while you wait on mayo. Show your rheumy their web page and see if he will refer you in with a note from him. My neuro did that and I got in really fast. Don't give up, tenacity will get you where you need to be.