gjensen

In my quest to find what's causing my dysautonomia I read that autonomic dysfunction = small fiber neuropathy. I had a skin biopsy done and it came back normal despite the peripheral and autonomic neuropathy I have. Does this lead to a clue of what might be causing it? Anyone have similar test results?

How do you know that you have peripheral and autonomic neuropathy? I am not certain that autonomic dysfunction is necessarily associated with neuropathy, though I guess that it most often is.

My biopsy came back abnormal. The two samples that I had taken were very small samples. I thought to myself, though an accurate test, it would not necessarily be a good representation of what has gone on elsewhere. It seams that the test can confirm but not exclude the possibility of small fiber neuropathy. This is an opinion of mine.

Have you had a QSART test? That is another test that I had where the results were interpreted as autonomic neuropathy.

Ouch. I am sorry. I hope that you heal fast, and that the pain leaves soon.

If I felt that I could, I would.

If possible, I would go slow.

Robin it feels deep.

Pumpkin, after 41 years I have a reason as to why some like feet. LOL. I did not know. Thank you for the link to.

I did just look it up. What I read was that there could be cross connectivity, misinformation from the brain (I do not understand that one), or nerve damage. Go figure. So either I have suddenly got some wires crossed, mixed signals from the brain (I get that a lot these days, LOL.), or I have nerve damage (which I do).

Interesting, but it is the least of my worries.

I appreciate the insights. At least I am not the only one. This is new to me.

That is a good question. I think it depends on what your doctor thinks, and how you are doing. Whether or not you have unanswered questions etc.

I kind of lean towards going with the doctor on this one. He or she needs a good understanding as well.

Personally, I have wished that I had some testing that I have not. My situation is not managed well either.

Nope. LOL. I changed hands, and the position does not matter. It is an actual pain in the chest, but mild. It is a new one for me.

Something new every day.

Nope. LOL. I changed hands, and the position does not matter. It is an actual pain in the chest, but mild. It is a new one for me.

Something new every day.

I almost hate to ask. Maybe this is not unusual, but I have never experienced it.

I was scratching my left leg today, and it caused a pain in my chest. Left side. I did not connect it until I scratched my leg again. Laughing at myself I tried it many many times. Each time the same result. I tried it again a minute ago, and the same result.

How is that possible? I am not concerned. I just thought it was odd.

That is great. I hope that you share another update saying that you are continuing to do well. Good for you.

Thank you Rachel. Dr. Afrin was practicing here in the State that I live in. I understand that he has moved on. I have wondered if another hematologist at that office could be helpful. I wish that I would have pursued this when I first considered this and he was still here. I was working right down the road when I first became sick.

I am supposed to follow up with a hematologist for MGUS anyways. Maybe I can get a referral there.

Thank you Rachel. I have been digging around, and there is a lot here.

I have an abnormal QSART and I get more of a burning sensation. Tops of my feet, calves, thighs, top of legs, abdomen, lower chest, arms, and face. it is kind of new for me. I have had it, but is more extensive and intense than before.

Burning is not the best way to describe it, but it is the best that I can describe it.

I fixed the title for you gjensen (it's something only moderators and admins can do).

Thank you very much.

I don't know about mast cell problems either. But I've had on and off swallowing problems for 12 ys. Who knows why-it's very complex w an autonomic component, too. But when you are having trouble swallowing, you can go in and swallow drinks w a tracer in front of some X-ray (or whatever) machine to see where exactly you have the problem. When I was experiencing MS like symptoms a long time ago, it was the back of my tongue not pushing food back. Most often these days, my epiglottis doesn't trigger and I choke/burp on water (!). The doc said it was usually seen in 70 yo; never mind I'm in my 40s..

Good luck!

Thank you.

There is more to my swallowing than this topic. I have had an abnormal and normal swallowing test. For this topic and the swallowing issue I have the most of now is a sore raw throat that I presume is from excessive post nasal drip. It makes my troubled swallowing worse. LOL. I have went from being careful to struggling to do much at all.

I apologize for the misspelled title. I did not see how to make the correction.

I am unable to comment on the mast cell issues. Don't know much about this but I wonder if it is a problem I am suffering from as well and hope to get around to testing or med trials for it.

What I would say from reading your post is it is actually a good thing you were allergic to the benzos. I do not recommend taking these under any circumstances as I think it will cause many more health problems for you in the long run. I personally believe benzos are the most dangerous drug on earth and in many cases the damage they cause is irriversible.

I am no fan of benzos, but I am no fan of coronary vasospasms either. Heck I am no fan of medications at all. LOL.

Thank you Blue.

I do not doubt at all that misc. ingredients could be problematic. I have never switched manufacturers. My reactions have been upon trialing the drugs originally or later without switching.

I have an appointment with an allergist in a few weeks. I figured that I would start there. I am happy to hear that you were treated well by yours.

I am concerned about having trouble with the calcium channel blocker. I do not know of any other options to deal with my coronary spasms.

I wanted to bring this topic back to the surface.

I suspected a mast cell component to my illness early on. Over time I became skeptical and dismissed the idea.

My first complaint becoming sick was a sore throat, and trouble swallowing. I only went to the doctor once I could not eat. It was the first time going to a doctor in my adult life. Little did I know what was coming.

I was diagnosed with GERD and put on PPIs. As they upped the dosage, I got worse. I constantly had what I know now is post nasal drip. I did not know that then. I did not tolerate PPIs at all.

Along the way I reacted poorly to medication after medication. Often the reaction was rather severe. I only tolerated Clonidine.

Recently, I have been on a calcium channel blocker. I noticed some post nasal drip upon taking it but I had no severe reactions so I tolerated it. It has gotten worse and worse.

I have had a prescription for Ativan and Valium. With ongoing spasms I trialed them to "keep everything calmed down". Ativan did not help the spasms, but it did keep me calm. Then I started having reactions to it. Itchy watery eyes, post nasal drip, itchy sore throat, trouble breathing etc. I tried Valium and it did the same thing.

I had a few breathing spells taking the calcium channel blocker when it would first kick in. Then it got bad. I dropped the dosage and it is more tolerable. It can still be a problem.

The post nasal drip is ongoing and a lot of it. For a long time I did not recognize what it as because it drains into my mouth and not my throat.

I have had bad reactions to 8 out of 10 medications that I have tried. Even Claritin that I did well with before, now I seam to be allergic to. An antihistamine of all things. Interesting enough, the reactions are short lived, but the post nasal drip and sore throat does not go away.

I am going to try Benadryl in a little bit.

I was going to see an Allergist. Is that a waste of time?

I hope that you get some relief soon. I get them and I do not enjoy them. Fortunately, I am not having them all of the time so I haven't tried anything for them.

I would be interested in hearing how that works out for you. I want to do something, I need to do something. My spasms are holding me back right now. Too much is a different place every day.

If not for the spasms, I would certainly be doing something.

Good luck.

Hey guys,

I know some of you here have breathing issues also,and was just wondering if anyone has ever come across a good explanation of this?,I was diagnosed over seas,and my Docs here,while very helpful don't seem to have a good grasp of how dysautonomia effects my breathing, I know lots of people here have good medical knowledge and I'm always trying to get more info so heres a few questions if anyone has something to add..

1. )Is there another mechanism or can low BP alone make breathing severely difficult?

2.) Has anyone here with breathing issues had them improve after going on BP meds? (Midodrine,Flourinef etc.)

3.) Does anyone here feel like Dysautonomia effects their breathing muscles?

4.) Has anyone come across any other treatments,meds or just lifestyle tips that helped with breathing issues?

Thanks in advance for any help,want to hear if anyone has anything to add as breathing issues have always been the most life disrupting problems Dysautonomia has brought me.

I have more than one thing that gives me trouble breathing.

Low blood pressure, and pooling blood seams to make me short of breath.

Occasionally upon waking up, I get the sensation that the assist is not there. I will wake up fine, initially. Then it is as if a switch is flipped and there is a change. I Know there is something to it, because I have seen my O2 go from 98 to 89. It is a very uncomfortable feeling, but has never lasted long enough to get seen for it. This has happened during the day, but more often it is soon after waking up.

I have a transition sleep apnea like problem, that fortunately, has not troubled me in some time. Knock on wood. When I have had these spells, simply becoming relaxed could be a problem.

I am now reacting to medication that I did not react to before, and they will give me trouble breathing soon after taking them. This is associated with post nasal drip, itchy eyes, etc.

I feel like I have muscle tightness from the bottom of my sternum up into my throat, with shortness of breath. My primary care doc did a pulmonary function test which showed that I had 'air trapping' which was suggestive of neuromuscular disease. She then referred me to a pulmonologist which repeated the PFT and he said it was normal. Sometimes I feel like my diaphragm cramps up. I don't know what the cause is. I gave up trying to find out

I had two PFT's. Both showed air trapping. One as called normal. Another was called COPD. Two different doctors. CT of the chest as clear and unremarkable. I do have a history of smoking. I still do not by the explanation. My breathing problems came along with the rest of this.

Becia, I think that I would have mixed emotions. I would like the idea of working towards some independence. I would also be nervous about it.

I agree with the LifeAlert suggestion, but a cell phone is the next best thing.

Just keep in mind that this may end up a positive development. Even if it takes some time to get adjusted.

I take a calcium channel blocker. Diltiazem. It has been pretty good for my HR and does not effect my sleep. I was unable to tolerate beta blockers.