arizona girl

I had 3 fairly close together infusions a few years ago. I'm a hard stick to so that was the worst part. I tolerated it fine and it raised by blood levels back to norm. I had so much else going on I don't know if I felt better or not. They should give you iv or oral benedryl with it to help prevent a reaction to it. Make sure you get that. It will give you a nice little nap too, while waiting for the infusion to finish. Really no worries, just make sure they are prepared to handle a reaction and what they will do for you.

Yes, I would pursue the low wbc. The mayo link was great. A hematolgist is a type of doctor that deals with the blood. You said you live in the desert. Valley Fever is spiking in arizona right now and can appear with a rash. A friend of mine had this happen. What are your doctors saying and did you get copies of all your blood work so you can read it yourself? I would say that you need to keep seeking what is wrong due to the serious illnesses that can be associated with a low wbc. have you googled low wbc and rash to see what pops up?

When I told Dr. Grubb that I'd had adverse response to clonidine, (I had to keep taking more and more for it to keep my bp down) he prescribed labetalol, I take 50 mg and add more if needed. It is a pediatric dose. Labetalol is an alpha/beta blocker and works for patients that are hyperpots. My blood pressure also goes up on standing. Your daughter's doesn't do that? It is interesting that she has elevation in Norepi and not high blood pressure too. Perhaps you could ask the doc about labetalol. A lot of people on here seem to have mast cell issues. Though I don't think I have that when I'm feeling off and having stomach issues I take zantac w/benedryl. Usually have of each pill and it seems to help. I just have problems with dry eyes, nose and mouth, so benedryl makes that worse. I'm so sorry your daughter is having such a hard time, hopefully you all are on the right track now.

"But seriously Dr. Grubb postulates that hyperPOTS patients can run high then shoot up and then crash. That's the balance you once mentioned" According to my tilt table this is exactly what happens to me, Grubb diagnosed me as hyperpots and put me on labetalol. He mentioned clonidine, but I told him that was awful for me, with my body demanding more and more to keep my high blood pressure on standing down. It was similiar to getting a addicted to a recreational drug and coming off of it was scary. I'm fortunate that I'm good at avoiding the activities that lead to the spike and crash. Those crashes are very dramatic and sudden with lots of symptoms and then my legs to turn to Jello and won't hold me up, once down I can't get up, until the episode passes. I had no BP on my tilt and I was still standing for a bit, and then what happens to me in real life played out and I actually did pass out on my TTT. In real life I'm on the ground before passout can happen. I haven't had that happen in a long time now, so maybe my treatments are working.

I take low dose labetalol, per dr. grubb. I tirate it up from 50mg as needed depending on activity and stress levels that day. If I'm having a quiet day, I don't always take it, but I monitor my blood pressure during the day. My hr/bp drops when I lay down, so I never take at bedtime. I am on the short acting form of labetalol. Also since my ivig infusions I have had improvements in my swings from very low to very high on standing. I still swing but not as high or low, they are closer together now. labetalol is an alpha/beta blocker and grubb prescribes for his hyperandregenic patients. I was on a lot of other bp meds, beta blockers and clonidine. Non controlled me, inderal at a higher dose made me gain weight and caused severe fatigue, clonidine patch and then pill, allergic to patch, then with the pill it would were off after a few hours and was requiring higher and higher doses to controll my bp, I think it made the swings worse. It was awful and scary going off of it, like the body became addict to it and couldn't get enough.

Pam, Hi sorry for not getting back to you. Some days I'm up to posting some not, then I forget. I also have had low d, b12 and iron. Iron or anemia can cause some pots like symptoms. Has she had a full hematological work including ferritin and tibc? The other thing to consider even if she got pots post virus, is there a possiblity her immune system is working right, which made her not be able to fight off the virus well. I had a very bad case of mono at her age, and didn't know I had it until I had huge white growths growing down my throat. We are so used to not feeling well, we don't always know when we are actually sick with something viral or bacterial. I never run fevers or they are poor in quality even when my colon ruputured and I had a raging infection. If you want to have her tested for immune issues let me know, I'll tell you what my tests were. At her age I didn't appear outwardly ill, though I felt a lot of pain and fatigue and lost weight and didn't sleep well, and I could cry or get upset pretty easily. Okay, how I'm treating what has finally been diagnosed after many years of being told everything was normal. Dr. Grubb put me on labetalol for the hyperandregenic. It is an alpha beta, and works better with patients who's blood pressure goes up. I take a very low dose and starting at 50 mg or half of a 100 mg pill. It has a short action time. I tirate that up or down depending on the day and my activities. I never take it in the evening as my HR/BP go down when I lying down and up when I'm upright or talking. It ain't perfect but I tolerate it, many cardio's put patients on to high a dose of beta or when that has long action and stays in the body longer. Those don't work great for most of us. They can also cause weight gain at higher doses. CVID/hypogamaglobulinemia - Common variable immune defeciency. Means my body doesn't produce enough or effective immunoglobulins, the part of our body that fights off infection, viruses and bacteria. This condition is often found along with other autoimmune disease companions. Which is me. I have undefined connective tissue disease UCTD, hashimoto thyroid, lichen-autoimmunity to my vaginal tissues, though it can be found in other parts of the body, I had a lot of yeast/bv infections. I also have PCOS polycystic ovarian syndome and the resulting metabolic syndrome that is caused by high levels of insulin. My blood glucose though is normal and I am not diabetic yet. What follows is what I take for them, I don't expect to ever be cured at this point, baring a miracle from god, but we are working on managing what I do have. It is too soon to tell how the latest treatments are working as I have only been on them a few months. CVID - IVIG/Privigen brand infusion 2x a month to replace the immunoglobulins. Hashimoto - just upped to 50mg of synthroid brand name. Pcos/insulin resistance - glumetza 500 x2 a day UCTD - Plaquinel 200 mg x2 a day lichen - plaquinel and steriod creams, diflucan, clynidimycin cream or metro for the infections D3 - 5,000 mg once a day. Dr. Grubb said d3 is better the prescription d2 b12 shots once a month Rocephine shots when I get an infection. Antibiotic. advil, tylenol or tramadol for pain. A topical pain patch called flector for muscle spasms and skelaxin I take these as little as possible. So, that is my plan right now. My infection rate is better, my hr/bp are better. I'm waiting to see what the new meds do, the plaquinel and synthroid, keep your fingers crossed for me, I still have a lot of pain and fatigue.

I have hyper pots diagnosed by Dr. Grubb and confirmed by catecholamine test standing/supine, also skin biopsy proved small fiber neuropathy. I believe grubb's literature states he doesn't feel salt loading is helpful with patients who's blood pressure goes up on standing. That being said I do suck on coarse nuggets of himalyan pink salt. It actually tastes good and has minerals too! I do have low blood sodium at times, but I also have a lot of immune defects causing my dysautonomia symptoms. I haven't noticed any change in my symptoms from using salt though. Other treatment plans addressing the multiple autoimmune issues, are helping, I've seen some improvements.

Glad to help. Just remember that small fiber autonomic nerves are found in a part of the body that is considered autonomic. They are every where. So cardio symptoms might seem unrelated to gi symptoms, when they actually are both autonomic functions. Thing about the things your body should do on it's own, you can have symptoms in any of those areas, ie, sweating, moisture, breathing cardiac, gi, well you get the idea.

Me too I have pcos. Polycystic ovarian symptom. I'm on a form of glucophage a diabetes drug for it. PCOS is caused by elevated insulin and other hormones. I only have the elevated insulin though and I am not diabetic.

I think neurotonin is for pain too. Yes, there are several types of nerves grouped into large fiber (ability to move mucles) and small fibers (control autonomic and sensory functions). An emg only tests the large fiber. If there are autonomic symptoms associated with suspected neuropathy the gold standard test is a small fiber skin biopsy, easy test, follow by qsart. This is called small fiber neuropathy. A failed ttt will point you toward this type of testing, depending on the response. FYI sf nerves are found in the blood vessels and are what constrict the blood vessels, causing the blood to be pushed up to brain against gravity on standing. When those nerves fail, the body has a back up symptom and goes into fight/flight response and pumps out extra norepinephrine. Mine triples on standing, because my blood pools because of nerve damage. The is called a hyperandregenic response. I get hypertension/ high HR on standing as a result, but under stressed circumstance they will suddenly drop and I collapse. I suspect that people that faint or get hypotensive right away on standing have lost their ability to respond with norepi. I have sfn which is caused by autoimmune disease and defective immune system. There are many treatments, but it really depends on what is causing the autonomic neuropathy. Diabetes is a primary suspect, but so is high insulin. If your fasting insulin hasn't been checked I would check that too. I have high insulin and normal glucose, my a1c has only elevated as reaction to some medications like steriods. The causes for sfn are many. Some times they are unable to find the cause and it is called idopathic. That is what happened with me at first, but now it has become pretty clear that my body is attacking itself because my body is unable to fight off things it is always in a state of fight. The best kind of neuro to see is one that specializes in treating autoimmune neuromuscular disease. They will have the skill set to evaluate this. Not all neuro's are equal, there are many different subspecialties in neuro field of study.

I'm going to pm you, let me know if you don't get it!

I haven't heard of that, would be curious too! Your daughter's result were similar to mine. My norepi almost triples. I also had high heart rate and high blood pressure the longer I stood. I eventually passed out when my body could not sustain those levels and BP/HR dropped suddenly and replicated the pre-syncope symptoms I had in real life. I've never actually totally fainted in real life, but I do collapse and can't get up and have a terrible nauseating storm of symptoms as that happens. If you think about what norepi does as your flight and fight response kicks in, it isn't surprising that she has mood swings and trouble sleeping. You would too if your body went into flight/fight response just from standing, then add any kind of normal daily stressors, for me even just talking, something I enjoy, well then we are really off to the races. I find on days that I'm on my feet to much or have been in an animated environment (which I do enjoy as I'm social) that I have a really hard to getting my body to reve down so I can sleep. I haven't yet figure out the best way to manage that. Though I am experimenting with a few things. I have to have the sleep timer on, on my tv, so it distracts me enough to fall asleep. Some nights though I find myself resetting it because sleep hasn't come yet. Wishing you all the best, take care!

I've had it several times. The needles do hurt, but passes quickly and I suppose it depends on the person how much they hurt. I've always had a problem with needles. It is a test that looks at the function of the large fiber nerves and those nerves control the mucles that help you walk and move. Mine were normal so far. It does not check the function of the small fiber nerves for the most part. Small fiber nerves are what control the autonomic nerves. Other tests like a skin biopsy and qsart test for damage to those nerves. If you are able to walk and move your arms and legs well, your large fiber nerves are probably okay, but the test should prove that for you one way or the other. Hope this helps!

Sounds similar to what happens to me during and after a near syncope. I'm always wiped out for a few days, maybe longer. I've gotten really good at avoiding circumstances that trigger. I tell my docs I'm the Queen of compensation and avoidance. Standing in line or in front of grocery shelves for too long is one of my triggers, as is going up steps and hills, heat/humidity, flying, some kinds of motion and some types of medical procedures are my triggers. I'm better if I'm moving or laying down. I always feel my best when I'm laying down and a few days of that and I get a bit better, as better as you can be with this. Talking also triggers the tachy. I used to joke oh if I could find a job lying down and not talking! That was until people started laughing, and I realized they were like well there is a job like that, think oldest women's profession in the world. So I don't say that anymore. Hope that gives you a good laugh! take care

I would contact your gi doctor yourself, tell them what is happening and ask them to talk with the doctors at the hospital. Have they tested you for any of the illnesses that can cause pots symptoms? Like small fiber neuropathy (thru skin biopsy). Have they tested your immune system for primary immune disease or autoimmune disease, have they checked you for food allergies, allergies, or mast cell issues? Are you hypermobile of flexible? In my opinion a pots diagnosis is just the begining of a through workup, until other illness is ruled out, only then can pots be considered the cause alone. There are many disease states that cause pots symptoms, have you read the articles on dinets main page under mechanisms and causes. That is how I figured out I most closely fit small fiber neuropathy, I turned out to have a defective immune system. I started getting more ill around your ages, though probably had symptoms most of my life. It took until the last 5 years before I was properly diagnosed, I'm 55 now. I don't wish that for you, the sooner they understand what is wrong the sooner they can manage it better. Stay strong and keep asking for help, until you are satisfied they have it right. As a young women they may be suspecting you have an eating disorder. If that is an issue please admit it, if it isn't don't be bullied into a diagnosis. Don't know if any of this is on target, they are just my thoughts after reading your posts, please do what is right for you and disregard the rest. Take care now!

A neuro that specializes in treating autoimmune neuromuscular disease, they will be familiar with defective immune systems and the autonomic symptoms that result from the body attacking itself or not being effective enough to protect itself.

I echo the others. I would call my primary or go to the er, especially if you don't feel right and with your family history. It can take a while to see a neuro, your primary may be able to expidiate it, but I wouldn't wait to have at least your primary look at it. If it isn't urgent, then followup with a neuro as your doctor said. If at all possible try to find a neuro that specializes in autoimmune neuromuscular diseases like ms and polyneuropathies. They are equipped to look at many different causes. Neurologists tend to specialize in different subspecialties so they are not all equal. There is also a condtion called adie's pupils, if you want to look that up. Take care and let us know your okay!

Hey linz, I did pm you on april 12th did you get it? It was a new reply in the urgent question pm. I was wondering if you got it as I didn't get a reply this time. I still have it in my mail box. Interesting that you are a bit low, that can be enough to show immune issues. Were all of them low or just one or two, IGG, IGA, IGM? You said you had an immunologist, did they ever do the vaccine challenge test on you, or the sub ig panels? Those are few tests that I wish levine had done on me, if those are bad then there is no question there is an immune issue. Oh I can't believe there was another snafu, ugh! Can't anything go smooth and just be easy? Good your doc is doing the right thing and sees where our neuro was going. At least he and levine are still working you up. Are you going to have them communicate with each other? I know he was picky about the laboratories he uses and I had to have some of the tests drawn at a special place that forwarded them to a lab that speicalized in those test. I swear I had the same kind of delays and a few hideous docs, when I was getting tested. I'm a spiritual girl and at one point I finally prayed a circle of protection, now don't think I'm crazy, cause it did help, but I said in the name of jesus I command ------ to get out of my healthcare. No offense to any one not pushing my beliefs here, it gives me comfort that a higher power is watching over me, no matter what happens, it gets me thru the tough spots. Linz, look forward to hearing your results when they come in sooner, rather then later. Take Care girl! azg

I too have felt better on some antibiotics, not all, like cipro or levequin they flared the neuropathy. Are rocephine shots the same medication as Cephalexan/Keflex? After not having several antibiotics work for me when my wbc elevates, we have found that the rocephine shots knock down what ever is causing the rise in wbc. I have a standing cbc, that I have done when ever I feel like I'm fighting something, because I don't run a fever due to low immunoglobulins.

I always say my thermostat is broken too! I can get so cold, sometimes after eating, that I have to put socks on, a heating pad and crawl under the blankets. Cold hands and feet a lot, but then I can't tolerate the heat either and my hands look like puffy sausages and feel wrong, well all of me feels ill pretty fast in the heat. I always know when my husband turns the gauge up or down on the ac to save money, because I start to feel bad, go check and sure enough he changed it.

Oh linz, so glad to hear you have a doctor in your corner that is a saphire! I'm praying that they get to the bottom of your fast deterioration soon!! Did your immunoglobulins come back normal too? Your sfn tests though does show something is wrong and at least you've ruled out some of the more obvious causes. So glad your doc is looking deeper. I get what you say about the physical exhaustion stress happening pre and post doctor's appointment. I always feel like I have to prove to them something is really wrong. Then I always leave the appointment remembering I forgot to ask about something. Then you have to wait months to ask again. I do have a few docs now that I feel I can trust. The new rheumy, after not fitting any kind of diagnostics closely enough for years, said I do indeed have autoimmune connective tissue disease, defined as uctd, which can actually be treated. My neuro had suggested methotrexate, not ready for that, and though she agreed we may need to go there, she agreed plaquinel is something we could try first. It has way less side effects then methotrexate, so I'm happy about that. I hadn't been feeling great, having a bit of a pitty party for myself and had been hoping the ivig infusion alone would be enough. It can't do everything but I was hoping. I'm glad the doctors have finally made what I think are appropriate diagnosis's now, but I've had signs and symptoms of thyroid, autoimmunity and immune deficits for years; I just turned 55 and it has taken since I was in my late twenties to finally get a proper diagnosis. I can't help but feel early treatment would have controlled or prevented me from getting to the place I am now. That being said my last infusion went great after having to put it off an extra week, I didn't want to do it on my b-day. I feel better and I can physcially feel the difference. I was having stomach pain which looks like it was coming from the new generic synthroid I started, I switched to brand and it has stopped. So, hopefully the thyroid stuff will improve and in about 3 months I'm praying to see autoimmune improvements with the placquinel getting to theurapuetic levels. It is so sad that we get relief from getting a diagnosis, no one wants to be sick, but to finally have names for all the symptoms that have been there for so long, and to actually have some, somewhat effective treatments, does bring hope that better days are ahead. I really wish that for you linz, take care now!

Hi Jen, in advance of meeting with the reporter send them a link to this sight and have them watch the changes video that was produced here. It is the second one pinned at the top of the forum. You might want to add that many things can cause orthostatic intolerance, including some serious illnesses which they are still trying to figure out for you and then how to treat it. I'm sure most of us here would feel self conscious and embarassed to have the attention that a fundraiser brings, especially when we are used to doing for others. It seems though you have a tremendous amount of love being sent your way, we don't always know how much people truly care for us until something like this happens. What a gift to know how much you are loved and how much people want to help you. They all want to feel that they are doing something to help, so let them feel good that they could in some small way give back to you. Also this is a wonderful opportunity as you said to educate, utilize that to the best of your ability, your story may help someone else get to the right care. Being able to help others get to the right doctors and right cares is what has helped me feel a bit better about being sick. It creates compassion and empathy for others, I may not have had, had this not been my path. Best to you, take care and hope it all goes well.

I would find a good endocrinologist. You could go to your primary if your insurance requires a referal, if you don't need one to see a specialist, then you could call and make an appointment as soon as possible, it can take a while to get in with an endo as a new patient. I have found that ratemds.com does a pretty good job of patients accurately rating their doctors, if you don't know of a good one in your area.

Hi, potsy, dana and anyone else that doesn't run a fever when they are actually sick. I too have hypogammaglobulinemia or CVID. It is diagnosed by Immunoglobulins Quantitative with Immunofixation, if any of your igg, igm or iga's come back low they then check a sub igg panel, ige, igd and do a vaccine challenge test. A screening test on your CBC that might show something is off is your ig/ratio. If that shows high it means some of your immunoglobulins are suppressed. That happened to me on and off for years and no doctor ever looked into it. My neuro checks this routinely in all his patients, which is how they found mind. Looking back over my life I can see there were signs probably from birth. When you have hypogamma your body is not able to mount an immune response and produce a good fever to fight things off. I will feel like I have a fever and or infection with the achy's and pain but no fever. When my colon ruptured with pertinitis and wbc of 20,000 the highest my fever got was 100.2. Now when I feel like I'm fighting something I have a standing CBC to see if my WBC is elevated, so I can get on antibiotics right away. I now do rocephin antibiotic shots as the orals weren't effective and messed my gi tract up and caused yeast infections. We still don't know for sure what is causing my infections and assume it is GI or female related as that is where the worst pain is. I also am now on IVIG to replace my defective immune system as well. It has helped but it is not 100%. Interesting recently we found out I have autoimmune issues, I always thought I did. Hypo and autoimmunities tend to show up together. Autoimmune and/or infections can cause dysautonomic type symptoms. I've had a positive ana on and off for years. I have autoimmune SFN, then hasimoto thyroid showed up and now have an autoimmune condition of the skin called lichen planus. If any of the women here get repeat vag infections and/or are inflamed down there a lot, it is something that should be considered. My new rheumy has said I have UCTD (undefined connective tissue disease) this is a new diagnostic code for patients that don't fit the full description for something like lupus or sjogrens. I have some symptoms of both of those as well. It took forever for these things to be diagnosed, I have however had symptoms of all of these conditions for years, prior to any treatment plan. Can any of you relate? If not hope my story is helpful! I am grateful if my story shortens some one here's path to diagnosis. I hope no one has to go thru what I did.

Hi Rich, One type of doctor that can diagnosis these is a Neurologist who specializes in autoimmune neuromuscular disease. They are a subspecialty and there are not a lot of them. This type of neuro treats patients that have ms, als, derma and polymostis, polyneuropathies. My neuro is one of them, they specializes in muscle and skin biopsy. They are in phoenix arizona. Perhaps if you call them they may know a neuromuscular doctor closer to your home.