arizona girl

No one has ever said that I have neuro pots. Grubb said hyper. However we do know I have small fiber nerve damage - a neuro component, autoimmune and immune deficiency. I've also had pretty high inflammatory markers along with MTHFR homozygous. I wouldn't fit the neuro pots with the symptoms you listed Rama, as my bp/hr both drop when supine and at times I have also awoken with hypotension and brady. I am never high when supine. Are you saying neuro and hyper are the same thing? Yes, post the articles, because there are probably others on here who do fit that set of symptoms.

Hey lynnie, Does this only happen when your upright? Do you drop if you lay down? This sounds like a hyperandrenergic response. Google Dr. Grubb and hyperandrenergic pots and you can read about it. Checking your adrenals I think means they are looking to rule out a pheo. Also have they checked your supine vs standing catecholamines?

Hi Adina, Just wanted to let you know you are right and your doctor is wrong on this issue. Emg checks the large fiber nerve function not the small fibers. A qsart, thermo test and the gold standard a skin biopsy for small fiber neuropathy are currently the best ways to tell if you have it. A combination of those 3 tests along with autonomic tests like a TTT or poor man's tilt are the best work up for it. I know I have sfn due to a autoimmune issues. I believe that gluten issues can also point to sfn, they are finding many autoimmunes like sjogrens, diabetic neuropathy, insulin resistance can damage the small fiber nerves. I saw Grubb, he is good,you might want to request a skin biopsy at vandy. I don't know if they do. I've been there as well. My skin biopsy was actually done by a neurologist who treats autoimmune neuro muscular disease. Your basic neuro probably isn't up on sfn. Who diagnosed your sister? Maybe you could see her doctor. That pain you are describing sounds like classic peripheral neuropathy. Peri nerves are also sf nerves. There are several including autonomic and sensory. Good luck with your quest.

That would be a yes. My endo after we found out I had hashi with a normal tsh, told me that high cholesterol is a sign that the thyroid is not working right. It also effects all the autonomic functions and endocrine balancing. I have more going on then just thyroid. I turned out to be low free t3 and am now on synthroid and t3. Cause of my autoimmune issues she did not want to do armour. My facial and neck swelling has come down. I've lost more weight and my hair loss hair and skin that got really dry before we realized that my t3 was low to, have improved. I will be getting a new lipid panel next week and I expect it will have improved. I was unable to take the zocors. I also have the hyper type of pots with the high bp on standing with a rise in norepi. I also have high insulin and pcos as a result of that. There was a couple of recent posts about thyroid, if you want to read what was posted you can check my posts and topics on my forum page.

I was very low as well and was prescribed by my doctor the once a week 50,000 dose which is D2. In the US this is an approved prescription for low D. You can not get it without a doctors involvement. Having said that I saw Dr. Grubb around the same time and he advised that D2 was not absorbed as well as D3 and advised high dose D3. So I didn't fill the script for the high dose D2. Instead, I take the jarrow brand 5,000 d3 once a day. I'm still only in the 40's with that dosing and if I stop taking it I drop again. I also have not noticed any side effects one way or the other. There are a lot of disease states now being associated with low d, including cancer. So, I do think it is important to get your d up if it is low, it is simple to do and not that pricey. I think the risk of toxicity is low and not getting up your levels puts you at much more risk for serious illness. If you don't tolerate it or have side effects it is easy to just stop taking it. I live in arizona and who would think my d would be low in the sunshine state. I think I have in an inability to convert my vitamins. Know for sure that is true with folic acid as I am homozygous mthfr, which means I'm missing the enzyme to convert it to the active form the body uses. I now take methylfolate and methylb12 for that issue. All my levels have risen with the right forms supps for me.

Hi, welcome and sorry you needed to find your way here. May ask what your sister died from? It is concerning and something that can happen with one particular type of EDS. The vascular type. There is actually a genetic blood test for this and considering your symptoms and your family history, something you should for sure rule out. I myself had that test done. It is important for you to find an EDS specialist in your area, they are usually rheumatologists and genetics doctors. EDNF.org is a good resource. If you don't own a blood pressure cuff yet, I'd pick one up. Get one that records multiple readings. If you haven't read about it yet, you can do what is called a poor man's tilt test at home. Start with taking it first thing in the morning while still supine and not moving around a lot. That will give you your baseline, then take it at 5 and10 minutes of stationary standing. I would also take it when you are feeling off. Keep a chart of your numbers and what posture you were in when taking it. Doing this will give you a lot of information. It will help point you to which forms of dysautomia you are dealing with. Pots is only a rise in hr on standing. You may find you are also hypotensive on standing or hypertensive, you may also find you are hyper on hypo when supine. You may want to ask your doctor for a tilt table test as well. Pots and eds are often found together. Did your cardiologist do any imaging testing of your heart and vessels? It is important that you let them know of your sisters sudden death. Obviously there was something wrong and no one believed her. It is unfortunately a very common experience for most of us on the forum. You know in your gut somethings up, listen to yourself and don't allow yourself to be brushed off. Hope you get your answers soon, glad your taking the time to do what is right for yourself and reaching out to others. You will get a lot of support here to do that.

Oh my gosh I just went through some of this last year. I second the parathyroid testing, elevated calcium is a lead indicator for it. I'd had thyroid nodules for years, biopsied, labs all normal. TSH normal. However, I had many thyroid symptoms some that fit hypo and some that fit hyper. But, no you don't have thyroid disease. My cholesterol was increasing and I was gaining weight and getting very round looking in my face and neck. I go for rheumy workup for sjogrens/lupus and they do tpo/abs to check for hashi/graves as part of their workup. They come back positive for hashi. I was already seeing a new endo for pcos/hyperinsulinemia and glucophage in the past had improved my lipid panels some, but that didn't happen two years ago when I went on glumetza. My insulin levels are much better now, but my lipids kept getting worse. My glucose is usually normal and I only had very mild elevation of a1c. My endo took it seriously and told me that is most likely why you have elevated cholesterol and weight gain from the hashi. She also wasn't surprised that I'd had symptoms of both graves and hashi. She that happens a lot with autoimmune thyroid disease. So we started me on synthroid, generic hurt my stomach, switched to brand. Increased up to .67 and I got more hypo symptoms. New labs showed my Free T3 was barely low normal and my free T4 was at the very top of the range. So, they were opposite ends of the range. My tsh was now very low normal and what they want with hashi. Optimal levels for fT3/FT4 should fall close together on the range, somewhere in the middle to low end. She then prescribed T3 and my symptoms have improved. She prescribed cytomel/T3 and decided against armour thyroid as I have autoimmune disease, and she felt it might trigger another attack, which doesn't happen with cytomel. Haven't had my next round of labs yet. I know it's now working as I've lost weight, my hair stopped falling out and my fatigue and bp/hr are better. You may need T3 added to your synthroid. TSH is the worst screening test IMHO. I think better screening tests are the Free T3/T4 and thyroid antibodies tpo/ab. It was obvious I'd had thyroid issues for years. My new naturopath also wants a RT3, but he said my treatment wouldn't change if it was positive. I'm seeing him because I am homozygous for mthfr gene defect and he's treating that with mthylfolate, methb12. I'm sharing all this with you, so you know you aren't crazy. Doctors are missing a lot of thryoid disease and aren't testing for Ft3/4 to drive treatment. An endo that won't look at that stuff is not good, many naturopaths are better at treating thyroid issues then endo's. Oh thyroid disease often causes pots like symptoms, and they can go away if you treat they thyroid disease right. Also if you don't get your labs, just go in and ask for them. They have to give you a free copy. Look forward to hearing you got the right tests done.

Congratulations, those are all tests that will rule out autoimmune, primary immune and inflammatory conditions that can be the secondary causes for pots like symptoms. I've had about 2/3rds of them. It will be really interesting to see your results, if you don't mind sharing with the forum when you get them. Can you share which doc your finally found that is ordering these. It sounds like a really good workup.

I've had pots for a long time and never really associated hair loss with it. I'd have spells where I would loose a bit and it would grow back. The most common autoimmune disease associated with hair loss and body moisture issues is Hashimoto thyroiditis. As it turns out after suspecting for many years I had thyroid issues with nonactive nodules and being told my tsh was normal and that I didn't have thyroid problems. My tpo/ab's came back positive for hashi. My free t3 was low. My FT3 and FT4 were at opposite ends of the range. My hair loss first got worse with just synthroid and has now stopped with the additon of T3. Thyroid disease can also cause problems with your hr/bp. I would suggest anyone with these symptoms make sure their doctor checks FT3/FT4 and tpo/abs before dismissing thyroid problems. With hashi your goal is to suppress the tsh and try to get the t3/t4 around the same number.

Congrats on getting your appointments. I wanted to also welcome you both to our beautiful arizona. That area of scottsdale is just so pretty being in the foothills. If you want any good ideas of things to eat, see or do while your here, let me know.

Hey, rama, My heart is in Sedona. When I went to NAU in flagstaff, sedona was our beach. As it was only a 20 minute drive. I could go snow ski or drive down and lay in the sun. Those were the days. Of course it was during aerobics classes up there that I started having the near faints regularly. Being in college age, you tend to blow things off. I was though a frequent visitor to the campus health center. We also have the most amazing sunsets. In spite of being sick those are the kind of things that make me feel truly blessed.

Joann, I'm describing two different states. Hypotension/syncope vs orthostatic hypertension/tachy. There is a group of us who's bp goes up on standing as well as having pots. Those people when tested often have an excessive increase of norepi (fight/flight) hormone when standing from the number they have when supine. That excess norepi most likely is the cause of the hypertension. Which I only get when I'm standing. My bp/hr are totally normal when supine. That reaction constricts the blood vessels and pushes the blood up to my brain, as the nerve damage to my vascular nerves (sfn) are unable to do it as they are suppose to. The excess is what causes the hypertension. I suspect that patients that are always hypotensive or faint quickly on standing, have also lost the nerves in their vasculature as well as their secondary back up system - the ability to constrict the vessels with norepi has also failed. Having strong leg muscles can help compensate as a third backup system as your muscle pumps can also push blood up. Which is why some us feel better when moving vs standing. This is just one set of dysfunction that can happen in dysautonomias.

Hi Guys, Rama, I've always been fascinated with australia. Hope one day to be able to do the flight. Arizona is a beautiful place to live, anyone ever comes this way I'd be happy to share it with you. I've lived here since 1972, so I know the good places. I am tolerating ivig very well, it's almost been a couple of years. I've only had about two infections since I started. Of course, for a long time I didn't even realize I was having infections because I was not producing much of a fever when I had them. If my colon hadn't ruptured we may not have figured that out. It for sure isn't a cure and doesn't get rid of all the symptoms. I have had some improvements in my autonomics and pain levels. Not 100%. I'll take what I can get. I did have one reaction the first time I had it. The closest thing to the shakes that you described in your other post. Thank goodness I don't get those, I don't know how you all are dealing with those, they seem very scary. I'm not so sure they are a result of a dysautonomia, as they sound more like neuromuscular symptoms and or seizure like activity. I saw a lot of those kind of patients at the infusion center my doc sends his patients to. My doc did have to switch the type of ivig I was on after 4 months. It was carimune and had 2% glucose in it. Something a prediabetic person should never get, I'm still trying to get rid of all the weight that caused. I'm down 16, with the help of the gluemetza and T3/T4. I'm on privigen, and other then a mild headache and a bit of aches right after infusion, I'm good with it. I would say anyone considering doing ivig should really do their homework on which ivig product is best and make sure they know what their total quantitative immunglobulins, sub igg panel, igd and ige are before starting anything. Those numbers can impact how well you would tolerate it. If anything is borderline a vaccine challenge can also show if your immune system is responding. It just seems so unlikely, but I can't believe how many different areas of my body are defective. How can one person have so many! Ivig alone isn't enough for me, I still required t3/t4 for hashimoto, glumetza for pcos/metabolic/high insulin, plaquenil for the utcd, labetalol for the bp/hr swings when I get them, supps for mthfr gene defect methylfolate and m-b12, and d3. Of course, you'd never know from taking a look at me I've got so much going on. So many docs and people say well you look good! Ah the silver lining! I really hope you are able to get an effective treatment plan soon. If anyone can figure out how to overcome this, it would be you rama.

Foggy, hugs! Your observations are great. Having chased down UCLA, Vanderbuilt, Grubb, and Mayo, you realize that everyone has their own research position. There is a lot of ego and competition between research facilities, especially for funding and that their position is the correct one. If you understand that and use your own filter to look at the results you get from them as it relates to you, you can still get what you need, whether you agree with their hypos or not. As for the Diabetic neuropathy, you are on target with that. Diabetic neuropathy is acutally small fiber neuropathy that has been caused by the damage glucose and or insulin causes. Also diabetes is starting to be considered an autoimmune disease, so there is that factor as well. Other conditions can cause small fiber neuropathy. There are several kinds of small fiber nerves. If you google it you will see that it covers the symptoms you are describing. My understanding and I could be wrong, is that small fiber nerves are found in the vasculature and allow the blood vessels to constrict on standing with gravity, which forces the blood up to the brain. When those nerves get damaged it causes the blood to pool because the damaged nerves can no longer constrict the vessels. Depending on your bodies abilities to compensate your body should go into flight/fight, as it senses lack of oxygen to the brain. This then causes the body to shoot off noradrenaline or norepi. Norepinephrine also constricts the blood vessels. I'ts kinda of like a back up system. The norepi though can become excessive and then cause standing hypertension and pots. I can't prove it, but I suspect that those that get hypo on standing are no longer able to produce the norepi and have no mechanism in place to counter gravity. A subspecialty of neuro's who specialize in neuromuscular autoimmune diseases will understand and be able to test for SFN. There are not a lot of them out there. I'm fortunate to have one where I live. Hope this give you some hope and that your not completely screwed.

I've learned to bring a wet dish towel with me in a baggie. If I start to overheat I put it around my neck, or press it to me face, hands arms and legs. I have also used ice cubes in my hands, rub on wrists and around my neck. However if I start to get the presyncopes, I have to get flat until it passes and then go inside. I love really cold drinks with a straw too.

Thanks Rama, good to know and mirrors what Dr. Grubb said to me about the auto antibodies. "Mayo is continuing to find new antibodies and just because the right one hasn't been found for you yet, doesn't mean you don't have one." At the time I saw him, he said that they had just found 5 more. So, between he and my neuro saying it's autoimmune I believed them. It fits for me and my symptoms. I also do have other positive antibodies and a sfn skin biopsy. I've always had a lot of pain and inflammation, as well as the fatigue which most of us have with our particular dysautonomia. Sure I'd love to know which one, but the truth right now is there are only so many ways to treat autoimmunity regardless of which one you have. I feel comfortable with the choices my docs and I have selected. They aren't perfect, but they go much further then just treating symptoms alone, as what happens with salt loading. Salt loading won't stop an autoimmune attack, even if it makes some of your symptoms better. That's just my take on it from a personnel experience. Grubb also said to me. "I worry about the patients that get fixated on POTS, blaming all their symptoms on it. I worry that they may overlook a more serious condition like cancer." As some of you may know he and his wife both have had cancer, he kidney and she brain. He really is able to see the big picture with his patients. To bad we can't clone him, so more could see him.

A yah, that's not normal. Back to the hospital or doctors asap. Let them know your concerned these spasms are going to tear open your stitches. If you were in for a couple of days for the surgery you probably had a hospitalist doctor assigned you that over saw your care. Get that docs name and call them. They would have come into to check on you in between your surgeons visit.

Rich, I'm confused about your poll. My skin biopsy on my hip and leg was for small fiber neuropathy. The results said normal at the hip and reduced densisty at the ankle consistent with length or was it non length dependent neuropathy. The report did not use the language autonomic. This biopsy was done in my neuros office and sent to a lab for diagnostics. I also had a lip biopsy done by a rheumy a few years later because I have symptoms of sjogrens. That biopsy was completely different as they took minor salivary glands. The results came back showing infliltrates but not high enough to confirm sjogrens. So the way you've put the poll together is confusing to me. On the other small fiber neuropathy poll out of about 50 members answering only about 4 of us have had skin biopsy. So how is the follow up going since your skin biopsies came back?

May I ask what autoimmune antibodies you already do have? Would you mind telling me exactly what symptoms you do have? I have three autoimmune diseases, hashi, lichen planus and undifferentiated connective tissue disease. These 3 along with some other auto's, including a blood one are often found with cvid. Dr. Charlotte Cunningham Rundles is the primary researcher on this. My ivig is helping with the sfn autonomic neuropathy, I didn't realize I had peripheral neuropathy until after I started the treatments and a lot of body pain went away and the buzzing in my legs at night stopped. However, I only qualified for ivig because I also have a primary immune deficiency called cvid. My neuro attempted to get if for sfn and I was turned down, until we found I had cvid. I did qualify for pheresis after being turned down for ivig, for my neuropathy and my insurance covered that. I improved on that, that also confirmed my sfn was a result of autoimmunity. It is very hard though to stay on pheresis. My doc uses ivig a lot with many neuromuscular diseases so he is very comfortable prescribing it and knows what to expect with this treatment. I think it is just a matter of time before sfn is covered by insurance, it is already being used for aag and other neuropathies. Mayo is still uncovering new antibodies. I don't have aag either, but it doesn't mean there isn't one there, they just haven't found them all yet. Dr. Grubb told me that. So I don't agree that there is no treatment for SFN. If you have autoimmunity it wouldn't hurt to have your Quantitative Immunoglobulins done and a sub igg panel to rule an immune deficiency. Especially, if you feel like you catch a lot of stuff but never really run a good fever when your sick. AAG is just one form of dysautonomia. Dysautonomia can be just primary/idiopathic with no known cause or an other disease state causing it or considered a symptom, secondary to another cause or disease. I'd say mine is secondary due to my diagnosis which show my autonomic nervous system has been attacked. This is why salt loading didn't work for me. Oh I'm happy to help, it may not be your problem, but it sure can't hurt to rule it out. Let me know how it goes with that doc. Rich had good luck with his in New York and I feel good about mine here in az. No guarantee of course with the one near you, but I'll keep my fingers crossed it works out.

Hi Kitt, I'd meant to comment on your previous post about ivig. I do get it, however most insurance companies won't cover it for just SFN, yet, however if you have large nerve fiber involvement it is considered polyneuropathy and that is covered. There are also many other medical conditions that qualify for ivig, including aag. Which I thought you said you had. If you go to primaryimmune.org I believe there is a list of disease the fda has approved it for. I'm not sure what all your actual symptoms are, that would help point you in the right direction. Also I posted in the neuropathy poll post about my neuropathy and Rich got pots. If you want to read that. A link to a doctor that does skin biopsy is found on the neuropathy associations website at neuropathy.org These doctors practice a subspecialty of neuropathy that treats patients with autoimmune neuromuscular diseases. There are not a lot of them, they have a medical center list that you can look at and see if there is some near where you live or can travel to. So I hope this helps you, take care girl.

Hi looney, I have sfn diagnosed by skin biopsy. I didn't get qsart, as my doctor didn't have the equipment at the time. They do now though, except a TTT. My biopsy along with my TTT results and symptoms where enough to make the diagnosis. My neurologist feels a combination of autonomic tests will uncover autonomic and small fiber neuropathy. He said it is often patchy and are more likely to catch it with qsart and biopsy. IMHO I think those neurologists who treat autoimmune neuromuscular disease are ahead of the curve on testing and finding sfn. They make an effort to look for underlying cause. Which often is not done if you go to a cardiovascular autonomic clinic. Kinda of the difference between looking at how vs why something is happening. Both ways of looking at it are important. At first mine was called idiopathic, as first rounds of tests didn't find cause, since then my causes have been found and we are treating them. I am improving with my treatment plan. Dr. Grubb was able to look at my neuro's notes and tests and agreed with the diagnosis. Dr. Grubb went on to also diagnose a hyperandrenergic pots/syncope as I also had standing hypertension/tachy, supine hypo/brady and excess elevations of my norepi on standing. I'm fortunate that my near syncopes take added triggers which I am good at avoiding. As far as I know these tests are not just for adults. My doctor specializes in autoimmune neuromuscular diseases. His patient's often have both small and large fiber neuropathy. These types of neuropathy are often the results of primary autoimmune disease and sometimes the chemo immune suppressant type meds can also damage the nerves. Rich got pots was recently diagnosed with sfn through skin biopsy, after which they ordered more testing to see if they can determine cause. He hasn't posted on that yet. He found his doctor through the neuropathy association or at neuropathy.org. My doctor is also a member of that association. Maybe there is a medical center in your area.

Oh, also I would not ever say that you are a hypochondriac. Not even close. So be kind and don't do that to yourself. You've been through enough.

I'm so glad to hear you've got counciling scheduled. It is no wonder you are fearful of dying having just lost your daughter. Sorry, I had forgotten that. Having lost my pregnancy at 7 wks and then never getting pregnant again. I understand that loss and what it does to ones heart and sole. My church offered a greaving program for women who lost their babies. It lasted 3 months, I was with others who also had lost babies, we got through it and had a beautiful ceremony to honor their short lives. It helped immensly. While you do need to pursue a diagnosis, it is also serving as a distraction to a very large hole in your heart. Maybe a needed one. The only way to get through a loss like this is to go through it, there are no short cuts. One day you will be on the other side of the worst of it, though it is always there in the background. You do go on. The silver lining to my miscarriage was that it was the start of the medical community figuring out why I was so ill. So I'm grateful to my baby, that helped me. It took another 7 years before we figured it all out and with my treatment plan I feel like I'm holding my own. I know I will meet mine again some day. It is good to allow yourself to rest in god's loving hands. Be kind to yourself.

Breath!! From everything you've said there is no reason to think this is life threatening. I'm in my 50's and have had small fiber neuropathy as a result of a combination of immune, autoimmune and gene defects, probably was born with most of it. I'm not concerned even with all that I would die from this. I don't know anyone that has died from Small fiber neuropathy or dysautonomia in and of itself. Allowing yourself to get distraught over this will not help your symptoms and may make them worse. You are on the right course for diagnostics, so try to find some comfort in that. Maybe try to find some things you enjoy to distract yourself until you get through the diagnostic process. If it makes you feel any better, you are finding things out much faster then many of us on here. It took decades for them to figure out what was wrong with me. Take care!

Well that sounds like pretty classic pots. There may not be anything else other then that. The fact that you have no symptoms is good too. This may turn out to be something as simple as not hydrating well enough. Let the neuro doc figure it out for you. Show him your arm and your results you already have and take it from there. No need to put a name to this yet. I would rule out anemia and thyroid disease considering you had a pregnancy loss if I where you. Those can cause a high heart rate too. Wishing you a good appointment today.