arizona girl

Hi Kit,

I saw you'd been a member for a while and took a look a you previous posts. What ever happened with the aag diagnosis and treatment? FYI, I don't have the aag, but I do have autoimmune/immune issues and I get ivig which has helped.

Kelly saved by grace recently went to vandy through their reseach program. If you could do that, maybe go that way. She had a good experience with Dr. Biagioni, however I don't know if that changed her treatment plan or not. I wished I had seen him. I did see Raj early on and it wasn't as successful for me, as the focus really was about salt loading. Salt loading didn't help me as it turned out I have SFN and autoimmune issues. A lot of Vandy's research focuses on how the body uses salt to improve autonomic symptoms. Most of their clinical trials are focused in that direction. Most of the research hospitals all have their particular spin on what they are looking at. If you fit that type of patient, then you have a good experience, if you don't sometimes they won't even see you. So it really does depend on what your hoping for and your subset of symptoms.

What ever happened with cleveland clinic? From the posts I've read here over the years they may be good at diagnosing but not good with followup and treatment plans you take home.

These are just my thoughts from my own experience. I really hope you can get the help you need.

I can't answer your question, but it sounds like a trip to an eye doctor or maybe a neuro is in order. These are not normal symptoms. I wouldn't take a chance with my eyes. Opthalmalogist and maybe a neuro that deals with migraines and peri neuropathy.

A little training on how to use the forum. So you can find stuff easier. You can click on any member's name in a post and it will take you to their member page, on the left it lists "topics" and Posts". Click on either of those and you will be able to read what that member has posted to the forum. Also at the top of the forum is a link that says members. You can find members that way too if you know their forum name.

It would be good for you to read what Rich has posted. Also his link to neuropathy.org is in one of his posts. Man don't make me do all the work for you, when you can also just google or type it and get to their website yourself, you don't need to have a link in a post to find them. Most of us do our own research this way.

I'm happy to help, but this stuff is easy for you to do as well.

Sorry, my bad! It's The neuropathy association go to neuropathy.org, then click on the pn centers tab/link. You can also go to rich's posts on this he has it listed there too as well, I just got them mixed up. His link is working don't know if I did it right.

yup!

I don't know Rich's doctor's name, but if you click on the link in the post I made above to therapath, they have a physicians list at the top of the page and other good info about neuropathy and biopsies. My neuro is listed there. PM Rich for his docs name. You and he would be a good local support for each other. It has taken him a while to get to where he is, hopefully you can benefit, from him going before you.

When you see a rheumy they have a few autoimmune disease they look at, a general autoimmune panel should catch the most common ones. Like lupus, sjogrens, schleroderma, arthrities, etc. They won't commonly run immune panels on you, like the "total quant", but you could ask.

They however only treat rheumatic oriented autoimmune disease. Being ruled out there does not rule out an autoimmune disease in another specialty. I for example have autoimmune diseases that are treated by a rheumy, a neuro, an endo and a gyn.

I agree with Kathy something like polymys and poly neuropaths may be a direction you should look to. The good news is if you go to Rich's doc he will test you for those things, as my neuro here in az did. These neuro's are a subspecialty of neurology and specialize in neuromuscular autoimmune diseases. A reg neuro won't do any of that.

Good luck tommorrow and don't get defeated if things don't go as you hope, hopefully it will. Just know if you don't give up until you know they have it right, you will eventually figure it out.

I have this too. Temperature regulation is also an autonomic function. In my case my Small fiber nerves are under attack. SFN control your autonomic functions including temperature, digestion and bp/hr to name a few.

Hi, did rich pm you? Right after your post last week he posted about the NY doctor he is seeing. I was hoping you could try and get in with his doctor. I was actually diagnosed by a fellow neurologist to rich's. My doc is Levine in arizona. Info below from Rich's post.

I agree with Katy, your symptoms could be rheumy, but they also sound neuromuscular. Many of the symptoms you've listed I also have. I don't have the chest tightness but it is one of Rich's most bothersome. He is now making head way. Also with the infection issues. Try and get someone to do your "total Quantitative immunoglobulins", a sub igg panel, ige, and igd. Then a vaccine challenge if any of those come back low. Primaryimmune.org is a good resource. I have both autoimmune and immune deficiency.

I can speak to this from experience. I get ivig. I was first diagnosed after a failed tilt table and a positive skin biopsy showing small fiber autonomic neuropathy. Before the skin biopsy became available Qsart was the gold standard, I think the skin biopsy really is the standard now. However, my neuro did say that Qsart together with SFN biopsy is best. He explained SFN can be patchy and you have a better chance of uncovering it with both tests. Their autonomic lab is fairly new. So, it will be interesting to so how it works out in real practice. They however pioneered the sfn skin biopsy. My neuro is also listed along with rich's at the neuropathy association. I got lucky and was referred to him by another local neurologist I went to after the failed ttt.

They also do a lot of clinical trials for other neuromuscular disease like ALS and MS, and have partnered with mayo scottsdale on seizures. Anyway, he wanted ivig as first line treatment, my insurance denied, as I wasn't showing a polyneuropathy which is approved. He then prescribed pheresis which I did for three months until I got an infection and anemia, common side effects which are associated with pheresis. My autonomic function bp/hr became almost normal during pheresis. Which proved in his opinion that it was autoimmune. I had a history of very elevated ANA's, was told in the 80's it was mixed connective tissue, then fibro, then lupus, but nothing really stuck and none of the treatments were very effective. I continued to get worse. I think in your heart you know when it is autoimmune, whether the labs prove it or not. I've since been finally diagnosed with hashimoto, uctd and lichen.

At the time of the infection and anemia following pheresis, followup blood work showed I was also immune deficient in igg and igm, an earlier lab had showed I was borderline low, with an infection I was tanking. I also had a history of abnormal ig/ratios found on the cbc. I'd also had a lot of infections over the years and never run a high fever with them. At that point I qualified for ivig as I had hypogammaglobulinimia or cvid. I was started on high dose in part to also go after the SFN. It took longer for the ivig to show improvements then pheresis, but they did come. The most noticeable improvement was that the buzzing neuropathy of my feet and legs when I laid down at night and the all over terrible body pain I would get premenses went away. I'm also no longer swinging high to low on the BP and my heart rate pretty much stays under 100 now. Not perfect but better. I have been reduced down to about half of the ivig I was on and have noticed a bit of a creep back, but nothing like it was. I also have had only two infections since starting, after walking around with very low grade fevers for years and not knowing I was fighting infections because the fevers weren't notable. I no longer get a low grade fever and if I do get one, I have a standing cbc and if my wbc is elevated I get rocephine antibiotic shots to knock the infection down. This is proving very effective.

Rama is right ivig is being used in the research setting for SFN and has not yet been FDA approved yet. I think that is just a matter of time as the other neuropathies that are approved have found it to be an effective treatment and is easier to administer then pheresis. I have though heard of other patients that are getting it for SFN, don't know how they got their insurance to approve it.

If you go to primaryimmune.org there is a fairly long list of ivig FDA approved diseases.

My dysautonomia seems to present as both neuropathic and hyperandrenergic pots (high bp/hr with elevated norepi on standing) along with presyncope/syncope. It is also obvious at this point that I have an abnormal immune system and am also homozygous for MTHFR a gene defect.

I'm grateful for the progess I have made, it is however not a cure and will require ongoing treatment. Hope I was able to provide some insight, happy to help if I can.

Oh, that's too bad. Thanks for looking into that. BTW, my comment wasn't directed at you, just an out loud thought. So consider this just my take on things. Maybe I'm biased but, I think our changes video though longer really gives a bigger more informative and balanced picture. I thought this neuros video, while it is good, and it's good to get the pub, it was a bit short sited and gives the impression that patients recover some what quickly, with just exercise and salt loading, and some do. Many don't.

I just worry about those of us who could get dismissed because of this video, when we don't respond as expected. There can be among doctors that only know a little bit about Pots, a kind of "Oh, it's just Pots, it's not serious." type of attitude. Many still think it is only found in young women who will out grow it. That attitude happened to me. I didn't give up and we eventually found out my pots was a secondary symptom and was due to several serious disease states, that left untreated could have become life threatening. It took over 20 years to get properly diagnosed. Thanks in a huge part to Dinet. As it was I have had a few close calls, but I'm doing better with my current treatment plan. I might note because I'm hyper the salt loading did not help me. I went through a load of bp meds which did not help including beta blockers. Most made me worse. Labetalol has been the most effective. I agree exercise is important as it does keep your muscle pumps strong which helps counter Pots. I've gone through two PT rounds and got worse after both. I realize that the exercise plan I will need has to be done more carefully like they are doing with CFS and hypermobility.

As most of us who have spent any time on the forum know, it really depends on why we have pots. That pots should be a diagnosis of exclusion. Which is why in spite of medical interventions some of us don't get better with just treating pots. If we stick with it and keep trying to figure it out we will get to a better place as we do the best we can to manage our treatment plans. I feel lucky to be one of the ones recovering, not cured, but for sure better then I was. We are a tenacious bunch!!!

Well, this is interesting! I just have one question, "Why aren't we entering our own video, "Changes". It goes much further then this particular doctor's video does.

I wish you the best with your next set of doctors, sooner rather then later. I'm sure you already know this but dystonia and dysautonomia are two completely different illnesses. Also wiki isn't the safest place to get your info, as anyone can modify the info.

Well, that is good news for you. What actually is Grubb's protochol? This might be something helpful to share with the other forum members, especially since it is working for you. I'm so glad to hear you are doing well.

Please share your story with the rest of us.

Sorry, no ones replied. Bio feed back and the language your utilizing aren't something common on here. I know I don't know what those things mean or have the tools to monitor them. So it would be hard to give you any kind of intelligent response.

Maybe if you explained what your doing and what it all means, you'll get a better response. You might need to do a new post with a different heading and start over.

Hope you get some in put.

Thanks, issie that's a good call. I didn't know that happened with mcas when you are supine. I guess I'm lucky I don't get that. It is always smooth sailing once I lay down. I do get the waking issues with pain and stiffness, but my bp/hr aren't a factor with that, except maybe brady/hypo sometimes.

I agree with your neuro, if it is happening while supine that is not pots, but something else. Do you take your bp/hr when this happens while supine? Qsart alone does not rule out sfn. The gold standard is the skin biopsy and having both of them is best as it can be patchy. Does your doctor think there is a true anxiety component? There is nothing wrong with getting that diagnosis if that is truly what it is, there are lots of potential treatments for that.

I'm assuming you had a full cardiac workup to rule out issues there. A cardiologist would be able to do a holter monitor to catch what is happening when you have a surge. I don't really know what one of those feels like. I didn't even realize my heart was jumping 50 - 60 beats a minute until we monitored it. I just felt tired on standing. I also get what I call wound up in an animated environment.

No positive ana does not rule out autoimmune disease. There are only a few mostly rheumatic that have positive ana's. A postive one also doesn't prove an autoimmune disease. That make me think have they done a through thyroid work up, not just a tsh, but Free t3, ft4 and thyroid antibodies tpo/ab? I have hashimoto which can effect norepi as well.

If you can try to live your life and not live in fear, being afraid won't change anything for the better, and may make it more difficult.

I hope they get to the bottom of what's wrong, so you can improve.

I think that sounds like vitaligo. Which is an autoimmune condition of the skin. Google vitaligo images and see if they look similar. I might not have spelled it right.

I wouldn't worry about not getting the bp reading. The machines error when your bp fluctuates rapidly which sounds like what is happening with you. Hyper pots and hyperandrenergic pots are the same thing. People just say hyper for short.

Please try not to feed into the mental fear about this, as you will make the reactions worse. Be grateful that your body is using it's norepi as a back up system, to you not being able to get blood to your brain. I suspect those who have the hypotension along with their pots, have lost or do not have the ability to produce norepi and they get no blood to the brain and can not be up right without fainting, nausea of dizzyness. Many are in wheelchairs.

I've found lying down and being quiet, some slow breathing really helps when I'm having an episode. If you check your bp/hr after resting quietly it should be normal and you should feel better. I make a point of making sure I get horizontal thru out the day. Because we swing high to low with hyper pots I don't think the risk of stroke is the same as some one who's bp never drops. If your bp and hr are not dropping once supine, your doctor needs to know that. There may be something else wrong that needs to be addressed.

If you didn't faint on ttt or in real life, you probably aren't going to at this point. I do get presyncopes in real life and a syncope on ttt. It really takes extra triggers to make me collapse and the symptoms go away as soon as I get down and stay down for about 10 minutes. This is the body's way of making sure your brain is getting the blood/oxegen it needs, your body resets once you are supine. If you start to feel dizzy or nausea then lay down as soon as you can. If you are driving pull the car over. These are just commons sense things to do.

If you swing from high to low bp wise, Dr. Grubb put me on labetalol which is an alpha beta and I think easier to handle the clonidine.

Since, it sounds like you are hyper, I'd take a look at other autonomic symptoms you might be having anything from sweating to digestion. If you have those kind of symptoms I'd consider looking into small fiber autonomic neuropathy and try and see if you have some other underlying illness as your cause.

For now try some calming techniques, as they will really help. I wish I could always feel as good as I do when I'm lying down being quiet.

Oh my goodness. I'd go with the opinion of the 1st neurologist. I've never hear of the 10 xs, that would be more like what happens with a pheo. Vanderbilt and Grubb I believe use anything over 600. I'm not sure why your bp didn't rise on tilt, but if it does in real life, that is easy to document. The fact that it didn't rise above 600 with a beta blocker, just means that the blocker is helping you some what.

Fyi mine went from the 400's to the plus 1,100's. Grubb diagnosed me hyper even without that test. He recognize what he sees and only required the test to support his diagnosis.

Thanks banana, that is it. My neuro did some of them, as I recognize them. The hu one was scary. I haven't had all of them listed there done though. Hmmm makes me wonder if I have one of the ones that I didn't get tested for. We know because of my response to pheresis and then ivig that what ever it is is autoimmune, thus the undeferentiated connective tissue diagnosis.

Corina, You can actually go to mayo's lab test site and they talk about it there. Oh I forget what the panel is called, something like autonomic antibodies or dysautonomia antibodies. Some of the newer found ones probably aren't on it yet, due to being at a research phase. I think some of them are the pandy ones. If you have them they are treating with ivig or pheresis. I'm sorry for the brain fart. It will probably come to me.

Anyway else that went to mayo remember the panel name?

Hey bad,

If you google or search the forum for the small fiber neuropathy autonomic neuropathy, there is a lot of info out there, it be better for you to read the symptom list from an actual medical article. I don't have time right now to search it for you.

Hey rich will you pm our member Achilles, he needs referral's near new york and you may have resouces for him. He needs some support. Thanks dearie, it will be interesting to see what all you found out. Love to get a closer look at your lab report. I don't think my neuro did more then the sfn.

Oh, yes, I've had improvements. Hr/bp are better not perfect, pain levels are better, but still have spasms, but the all over burning/sour like pain that I awoke with are gone. My infection rate has improved. I was running around with infections and didn't know it because my immune system is defective and I can't mount a normal fever. I just felt like ****. My bowels, hr and bp with the addition of T3 have improved. I still am working through other symptoms though.

I haven't taken dex or metro. Maybe do a post on those for side effects. Grubb put me on short acting labetalol, an alpha/beta, due to my reaction to clonidine. It works pretty good, I don't even have to take it all the time now. I also wasn't controlled by multiple bp's, before the labetalol. Some like atenenol caused supine brady/hypo. Inderal caused weight gain.

I can see why he wants you off the meds, he is concerned there may be an under lying heart problem and he can't rule it in or out while your on the meds. Heart issues do need to be ruled out as cause first. You should though be in a supervised weaning process, did he advise you on this?

What I think was happening with me and clonidine was that the excess norepi was helping my blood vessels to constrict because they weren't, due to the small fiber neuropathy. So, ineffect the norepi was squeezing my vessels to get the blood to my brain due to pooling. The clondine stopped that effort, and my body to overcome it produced more and more norepi to overcome the clonidine. Hope that makes sense. The body has amazing back up systems.

Yes that is how grubbs office operates, they have to have your records first. Mine were faxed by my cardiologist. Just so you know though they didn't even look through my large stack until I got there. I actually pulled out all the stupid crap the office sent that wasn't even medical, while I was waiting for grubb to come in. If you doc fax's it you will have a confirmation it was recieved and you can call and say that. My doc confirms that you received my med records on "date". I'd like to schedule my appointment now. Also another tool I use for medical records, is I have typed up a complete medical history with all my symptoms and tests, family history, and all the meds I'm on and have taken and side effects. I did it chronologically.

I wish you to a speedy diagnostic processs.

J, what meds are you currently on for this. I'm right in assuming your bp/hr are normal whilst supine. Interesting that the cleveland doc wants you off the meds when you already had a positive tilt on them. Usually the concern with being on meds is that you will get a normal tilt and miss the problem.

Dr. Grubb is lovely, you could try to get in with his partner Bev earlier. Also, since you are so close I would call them on a regular basis for a cancellation. Mine appointment got moved up 6 months, by doing this. There is one really nice receptionist, that did this and another one who acts like fort knox to get in. So depends on who you get.

Glad they were able to rule out pheo, these hyper symptoms do mirror them, and I also have an adrenal nodule, and was told it wasn't pheo.

I do know this when I was on clonidine, I developed an addictive response to it requiring more and more of it to keep me low. I had to get off of it and that was awful. It needs to been done slowly and another bp med needs to be added in. I'm lucky I got through it, without a serious problem. Dr. grubb prescribed me labetalol, he also did not require I go through another ttt.