gjensen

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.

Thank you very much.

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 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.

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 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.