arizona girl

Hi, wondering if you know what is happening when you are supine? Are you swinging real high to real low, or are you high no matter what position your body is in?

Hi Kelly, I think with the symptoms your having, the better question is what is causing your dysautonomia. The truth is improvement comes based on finding and treating underlying cause. The weakness your describing sound more like a neuromuscular disease.

I'm now 55 and I was progressively getting worse though I first was diagnosed over 25 years ago with a unclear rheumatic disease and then an incorrect diagnosis of fibromylagia. Only in the last few years did my true diagnosises present finally with the proper testing. We're treating and there have been improvements and then setbacks.

What types of doctors and testing have you seen and had done?

Hi Batik, I'm sorry I wasn't asking to have them added and I understood what you were doing. I've been on the forum a long time and there have been other polls similar to yours. If your interested just search polls and they will all pop up. What I was trying to say I guess not so clearly is that your poll was including symptoms along with causes and that because the other commonly known causes here on the forum weren't included the poll would be weighted to eds.

You are right there are a lot of people here who have eds, but there are just as many that have other causes. The people that are coming here searching and looking for answers almost all have a rise in heart rate on standing and usually one or two other forms of dysautonomia, like low or high blood pressure and syncope. That is what brings us here for many different reasons.

EDS though often has autonomic symptoms and someone with it might not initially think that eds was the reason for it. As I'm sure you've already read eds can cause stretchy vessels and blood pooling that triggers the rise in heart rate.

If you are able to find the polls and read the results they are pretty interesting and some of them go back to the start of our wonderful forum in 2004.

Take care and I hope you find your cause and some resolution or treatments that work for you.

So sorry to hear this and that your in pain. I've never had it. I did get a severe painful spasm in my neck after they put my pheresis catheter in. I was put on flexeril and it went away about a week later. It does make you tired though. Vicodin scares the crap out of me because so many are misusing it.

Hope it gets better soon.

Well also your poll doesn't include all the conditions that contribute to pots symptoms, as there are many. There are many here with autoimmune diseases, immune deficiencies and small fiber neuropathy. Pots will always show the most because it often is a symptom of all or any of the other conditions which are causing it.

Hey turtle as I've done this already myself, you can go to google then images and type eds and you will see the hypermobility pictures of eds patients. Yes eds almost always is hypermobile of some joints. I myself have hypermobility of my small joints, but don't have a diagnosis of eds. There is another syndrome called joint hypermobility syndrome as well.

Hi again. Well Ehlers danlos is a genetic connective tissue disease and we do have many on the forum who also have it. Do a post of that in your topic line and you will hear from those who have it. There are actually five types of eds. There is only one genetic test and that is for type 4 which is the most serious kind as it can cause vessel and organ rupture. The other are diagnosed by symptoms of hypermobility. I think one type does have a particular look, but the others do not. Something like marfan a close associate of eds does have a particular look.

Do a search here for eds and you can read what others have already posted. Not sure what you mean by continuum. I see issies just posted and she has eds, so she knows first hand.

The other area you might look into according to your symptoms is autoimmune neuromuscular diseases.

A lot of us experience or exhibit symptoms of anxiety. There is a non emotional reason though for some of us. Those of us with hyperadregenic pots not only have a rise in blood pressure and heart rate on standing we also have a rise in our catecholamines/adrenaline, mostly of norepinephrine. This is a compensatory response when the blood pools or when something like small fiber neuropathy of the blood vessels doesn't constrict the blood vessels on standing to push the blood to the brain. As adrenaline also constricts the blood vessels the body shoots off adrenaline when the blood isn't getting to the brain properly. It is our own built in back up system. As soon as you lay down they all usually drop.

So think about it if your body is just doing this from standing, you are already elevated add a little extra social/emotional/physical stress in there and you soar. It exhausts the body and is why you feel so bad afterwards. Mine elevates sometimes just from talking.

This is just to let you know that there have been studies done that found that depression and anxiety are no more common in people with dysautonomia then the general population.

Hi welcome, this is a safe place to ask your questions, and your true identity unless you choose to reveal it, is blinded and only known to the administrators of the forum. Our forum is also monitored for inappropriate behavior and unwanted advertising.

While my symptoms haven't been officially diagnosed by a doctor as cyclical mine does flare with the female cycle which is very common with some autoimmune disease and other illnesses. It is also common once you have one autoimmune disease to have several. I do and I also have an immune deficiency called cvid. We have a lot of members here presenting with the same multiple types of symptoms and illnesses you are describing.

Have they tested you for autoimmune small fiber autonomic neuropathy yet? Skin biopsy with qsart is the gold standard for diagnosing it. It can be caused by autoimmune disease. If you also get sick a lot or feel like you are running a fever and it is normal or low grade you might consider cvid.

The genetic component also is not uncommon. I think you are referring to familia dysautonomia found in the jewish population. I think that is how you spell it. Pandysautonomia is also autoimmune caused and while there are no cures for most of the diseases yet, there are treatments that can manage them.

You are not alone in feeling the solidarity, it is validating to put a name to this thing that effects our life and to know we are not alone. We are not our illness we have it, it doesn't have us! We are still who we were meant to be in spite of it, maybe better in some ways because of it. There can also be silver linings to any hardship we go through. Take care!

Well welcome and thank you for noticing what a great forum we have. We all respect each other and I feel that this a very safe place to open up. We do not allow trolling, flaming, or advertising solicitating business's.

For many of us the information here was the key that opened the door to finally being diagnosed. So ask away, or you can also use the search feature to search any particular topic your interested in. There is also a lot of information under mechanism and causes on the main web page of dinet. We are in process of getting ready to update some of the features, as we transition the website to our new president.

Take care!

em, sounds like you need to do a little investigating. Nite sweats can be caused by several things. The first two things I would check would be my bp/hr as soon as your awakened by these spells. Stay laying down, don't get up before taking it. Then as batik suggested check your blood glucose. Hopefully you have an automatic bp cuff, maybe you can borrow someones glucose meter if you don't have one.

Also if you are anywhere near perimene or menopause they can be happening from that. My own nites sweats were being triggered by an undiagnosed infection and hypotension and bradycardia when sleeping. Which then triggers an adrenaline surge to get you back up.

So do a little sluthing for a few days and let us know what you find out.

Hi pt,

I'm on ivig and also went to an infusion center. I drove myself, they gave me iv benedryl when I got there and it was out of my system by the time I left. It burned going in though. I am now getting my infusions in my home through home healthcare through my insurance company. It is so much less stressful then the drive and all. Have you looked into that yet?

I can't speak to the subq, I decided I didn't want to have to do it every week and I have problems poking myself with just a glucose moniter. I do know though that ivig can make the blood thicker, but I don't know anything about blood volume.

There is a cvid support group on daily strength forum. You might be able to pose the question there.

Where you getting a lot of infections before they diagnosed you with cvid?

Well welcome and being brave enough to put it all out there. This is a safe place to be honest. Many of us have experienced the fear of not being believed because we don't look sick. In my case I'm also upbeat and social, which really throws people and doctors. Really though how is a sick person suppose to act or look? We have an invisible illness. I like to say most illnesses including cancer aren't visible until the end stages or chemo. It gives people pause for thought and they aren't so quick to judge in the future.

The fact that you have eds 3 is enough for them to believe you, you don't need a pots diagnosis, to prove you are already limited. That being said many of the symptoms you describe we all experience here. It is my opinion that medications can effect a tilt table test. If you google tilt table test and labs, you should get a lab website that tells you how to prepare for it, that is something you can show your doctor, as you may need to wean off of some things before the test. Also wear clothes that show your bare legs and wear cushioned shoes. I did it with socks and it was very painful.

Have you had the opportunity to buy your own automatic blood pressure machine? I'd invest in one if you haven't. If you want to document what is happening to you, most of us have done what is called the poor man's tilt. This means measuring your bp/hr upon waking without moving in the supine position. This gives you your baseline hr/bp. Then you measure what happens upon standing and when you are symptomatic. You may find that your bp/hr are normal when supine and rise on standing. This is called hyperandreginc response or pots.

You are right to assume that you may have a surge in adrenaline. One of the body's back up systems to blood pooling in the lower body, which happens with eds, is to constrict the blood vessels, by producing a surge in norepinephrine. This can be proven with a supine and standing catchecolamine test. If your norepi doubles or triples on standing from supine then you have had a hyper response. You must though also rule out a pheo. This is a tumor on your adrenal gland that can also produce these symptoms. This is why your doctor is referring you to an endocrinologist. It is possible that this is your cause, with as high as you get and that it isn't dropping enough when you are supine. FYI, you can appear to have anxiety from either of these responses, even though you have no emotional reason to be anxious. Also, it is possible some of your medications are triggering some of this or interacting with each other.

Hope this helps, hang in there, you are on the right track to figuring this out.

No it's virgina. It looks like he is out of cleveland clinic and has just opened his own autonomic center and is a neuro. I know he was able to do all the standard testing on natops like ttt, qsart, skin biopsy and other neurological testing and labratory. He found that natops had lems as his cause of dysautonomia, after many different doctors who said there was nothing wrong.

Give a google to chemali, there is a bit of info out there.

BTW I'm in arizona and I traveled to grubb in toledo, vanderbilt, and ucla. There not many dysautonomia specialists in the country yet. Many cities have no one.

I can't answer the hormone question, but I do know that these kinds of conditions are flared by the female mentstrual cycle. This is well documented. Don't think the imbalance would cause the hypotentsion, but anything is possible. I'd wait and see what your docs have to say.

Hi guys, natops just saw Dr. Chemali, in norforlk, va. Isn't that pretty close too. He had a great experience there. Read his posts, maybe you'll have better luck there.

Oh, natops, I'm so glad for you and your girls. Dr. Chemali has been mentioned here before, he sounds a lot like my neuro. Mine also ran the parenoplastic panel for small cell cancer. I'll have to see if they know each other. My doc runs both the skin biopsy and the qsart, and said there is a greater chance of catching sfn if you do both, as it can be patchy. He doesn't have a tilt table though, so that is great your doc had that too.

So how did your ivig go? Did they prepare you with hydration, meds and a slow infusion rate to ward of the ivig flu? What brand are they giving you? I'm on privigen. I've been doing ivig now for two years for common variable immune deficiency and sfn, we have now reduced me to 66 grams once a month. My wbc is down in the 8's after years of elevations, low grade fevers and infections. My autonomic function is much better too.

I know it's crazy to be so relieved to get a diagnosis for something like lems, but we are, it's validating and proves we were right and not mentally distraught. I think once you know what it is you can fight it and manage it. We can live with a lot conditions, as long as we manage them well. That's exactly what you will be able to do now for you and your beautiful family.

Please keep us posted on how it goes for you.

Hey Jangle, I'm on ivig and have had plasmapheresis, both of which improved my symptoms. ivig replaces the missing or defective igg, it is almost all igg. I was low in igg and igm. The pheresis removes the antibodies from the blood so they can't attack you. IVIG is easier, though pheresis worked faster. I also got an infection and anemia during pheresis. My total quant immunogloblins are now normal but I require monthly infusion to keep them that way.

There are also some disease specific igg treatments like for lupus and chrones, I think.

BTW my autonomic function has improved by 80% I'd say. It took a while to get there though and I also am treating other autoimmune diseases too.

Interesting to see that the research continues. When I saw Dr. Grubb, he said that mayo had already found 5, and he expected that they would continue to find them. This research is stating they found 18, many of which interact with the cardiovascular system.

I wonder if they will add them to their current autoimmune panel for pots! I've always said a diagnosis of pots, is really just pointer and a start to the process of finding what is causing it. Many conditions can cause the symptoms of pots.

This why I consider it important to pursue diagnostics for underlying cause. What information that has made it out to the general docs that may only know just a little about a pots diagnosis if any at all, is that only young women get it and they will out grow it, and the best we can do is throw some salt, water and a beta blocker at them and they will be fine. Dangerous if you have a significant underlying disease state causing your dysautonomia symptoms.

This study flys in the face of that, because if there are autoantibodies, then the cause is autoimmune and only trying to manage the symptoms will at best control symptoms and not disease process. I say at best because there is much research currently being done on autoimmune disease and no cure has yet been found. That said there are many ways to manage autoimmune disease and hopefully keep it from getting worse. Unfortunately salt, water and beta blockers do not stop autoimmunity.

I agree with your doctor best not to treat, until you know what your dealing with. The other tests for sfn are qsart and the thermal heat tests where they coat your body and put you in a hotbox. As sfn can be patchy, qsart along with skin biopsy will usually catch it. Not surprised sfn is not even on most neuros' radar, and the skin biopsy is now the gold standard. It also pretty symetrical, not one sided. I did have that all over achey burning fluey body pain. FYI, I now know that means I have an infection and my wbc is usually elevated when I get that way. Do you get a cbc done when your acting up? Thank goodness, I haven't had that happen in a while. A rheumy should also test you for more then just arthritis, like lupus and sjogrens, vasculitis, etc. You might also mention utcd, if your blood shows mixed results.

I have resisted taking the cymbaltas and lyricas, due to their side effects. I also think they are aimed more at symptoms then cause. While you may not be able to find your cause in the end, it is still worth ruling out all possibilities.

BTW I also went to vanderbilt and as they are mostly looking at pots from a cardiovascular point of view, you are right they don't, treat it, other then with salt loading and hydration and betas. Non of those worked for me as I was hyper and as it turns out my dysautonomia was a result of a messed up immune systems. Not sure which of my illnesses caused the neuropathy, as any of them could have.

I was trying to follow your post, sounds like you feel that your dysautonomia is being caused by a possible virus? I did get virus ruled out by going to infectious disease. Consider that maybe. I did however have elevated wbc's and about 5 years of very low grade fevers that came and went daily. Since we've been treating first with antibiotic shots and then with ivig they have gone away, except when I've had elevated wbc with signs of infection. Which has only happened twice since starting ivig. My wbc are down in the 8's now after being around the high end of normal or going up to the 20's with infection. Even with colon ruputure my temp only got to 100.2. So, if you feel like you have a fever, but aren't really registering one, that is another symptom to consider.

I'm just throwing this stuff out their, because as you can see my course to diagnosis was very complicated and like an onion we kept finding more layers. Perhaps something will jump out at you, and give you a direction to pursue.

Not at all, if I can help someone else get a faster diagnosis then the decades it took me, then it will make my struggle worth it.

Most people are familar with small fiber nerves because of diabetic neuropathy. There are several small fiber nerves that can be damaged, sensory and autonomic. I actually had autonomic symptoms first and then the classic kind described in diabetic or perpherial neuropathy. While sfn was first found in diabetic patients, they are now finding many other conditions that cause it, like high insulin levels and autoimmune diseases like sjogrens.

I was normal for the basic large fiber neuropathy testing, you know emg's. The thing is if you have large fiber involvement it is fairly obvious because those control your muscles and you won't be able to move right. I guess emg would confirm that type.

Even though I have pain and did have classic pain and vibration in my arms and legs when lying down after being up right for a while. My emg was normal so I got diagnosed with fibro. Only after reading here on dinet about small fiber neuropathy, was I able to ask that neuro who now had evidence of a failed TTT and who just did another normal emg; What about SFN? Magic words, he sent me to Dr. Levine who's office specializes in the small fiber skin biopsy. That biopsy came back abnormal both times it was done. There not alot of neurologists who specialize autoimmune neuromuscular disease, if you can find one that knows about the skin biopsy and small fiber nerve involvement then you have a good chance of getting diagnosed.

You can google small fiber neuropathy, autonomic neuropathy, autoimmune small fiber neuropathy and there are a bunch of papers out there describing it and the skin biopsy. My doctor with his associate have several under levine and saperstein.

Hope that answered your question. Happy to answer more if need be.

Hi guys, I had a lip biopsy, it wasn't to bad. I have many symptoms of sjogrens, but my biopsy while showing infiltrates, they weren't high enough to confirm sjogrens. The one draw back to the lip biopsy, is it doesn't catch sjogrens early enough, by the time it shows up on lip biopsy, you've probably had it for a long time undiagnosed.

Don't know if any one is aware but rheumatologist have had a new diagnostic code call undefined connective tissue disease UTCD. They use it for patients that have some markers and symptoms of autoimmune disease, like ana or ssa, etc, but are not yet positive for the other criteria to diagnosis sjogrens or lupus.

The good news is that they offer the same types of treatments for UTCD, as they do for specific autoimmune disease. Symptoms of fibromyalgia like pots are usually caused by another underlying illness.

I speak from experience on this. I have utcd and several other immune disorders and I was misdiagnosed with fibromyalgia for years, and continued to get worse, inspite of fibro treatments.

I just tested positive for the homozygous mthfr gene. Explains my pregnancy loss and not being able to get pregnant. I am going to see an adult genetist in tuscon in a few weeks, who deals with it. Treatment for it is the active form of folate called methylfolate. The enzyme on this gene can get switched, which means it is not able to process the inactive form of folate or folic acid commonly found in vitamins and added to processed foods. This gene also interfers with the metabolism of some medications that use the same pathway. Hetro isn't as bad as homo, but it also matters if you test positive on other thrombotic tests, which fortunately I didn't.

Yes, it looks like he needs a more in depth work up. Ask your doctors if they can refer you to a neurologist who specializes in autoimmune neuromuscular disease. We had a member on here a while back who expressed similar symptoms and she turned out to have something called stiff persons syndrome. Also neurologists can look at the brain to see if there is something there causing symptoms. Did mayo do and tests or films on his brain? What tests did they actually do on him?

A failed ttt just points to and confirms orthostatic dysfunction, it does not tell you why it is happening. In my experience pots itself is usually a symptom of some other underlying disease. If this was diagnosed by a cardiologist, they usually only treat symptoms and are not in the habit of looking for cause outside of the cardiovascular field.

Your doctors who are showing concern should also be able to get you into a specialist faster. Cleveland does have a neuromuscular center. I'd push to get him in as soon as possible, I'm sure your doctors will help expediate that.

Stay strong for your guy, I know this is rough right now, but you are heading in the right direction and once they know why, treatment can follow, maybe not a cure, but a good treatment plan that will help manage it and improve his quality of life. Prayers and a supportive family and friends also can help.

I don't believe either of those test are tests for autoimmune diseases. A crp is a general marker for inflammation and the wbc is a marker for infection or blood diseases if it's abnormal. Your crp is great showing no inflammation. Mine is elevated and does point to my autoimmunity however I did have to have specific tests to reveal my autoimmue disease. My wbc is now 8 after being elevated due to infection as a result of a defective immune system. Neither of those test though rule out autoimmune disease.

Your list of symptoms point to some form of dysautonomia and with the neuropathy on board could point to small fiber autonomic neuropathy which may be causing your symptoms. The causes of neuropathy like dysautonomia are many, some are causes by autoimmune disease, some they call ideopathic because they are not yet able to determine cause.

If you can find a neurologist in your area that specializes in autoimmune neuromuscular disease and does skin biopsy for small fibers, that would be a good doctor to see. That doctor should be able to at least screen in or out some of the lesser known, but common causes of SFN/perif N.