Autonomic Neuropathy

[FeatherMe]

I have been to most every neurology group in the tricity area and haven't found one to be competent. I got on line because I felt I had run out of options locally. I do have an appt. the end of May in Boston and, with the very helpful information given to me from you and others, I am seeing a peripheral and autonomic neuropathy specialist and I just looked and that same hospital also has neurogeneticists. I am hopeful. I will let you know how things work out. Thank you for your generosity and persistence. You have restored hope in your specialty for me. A monetary gift will be forth coming later this week.

[FeatherMe]

My trip to Boston was not what I had hoped. I was there about ten years ago and there was an attitude problem caused by a local doctor I had a disagreement with. He had contacted the Boston doctor and expressed unprofessional statements based on his ego more than on truth. I thought that would be gone, but it wasn't.
Clinicalguru3 directed me elsewhere in Boston. I saw my PCP last Thursday and gave him the paper to fill out. I received a call yesterday from Mass General and I have an appt. in August! That is a true miracle! It took me five months to get the other appt.! Thank you so much for the hope offered, Clinicalguru3!
Don't forget to donate. This is a fantastic site.

[FeatherMe]

Here's another thought. After I got home from the hospital and the sweating spells started again I started doing some thinking about the differences and this is what I have come up with. Due to a variety of symptoms I went to my PCP and he determined I was addicted to lortabs, oxycodone, and oxycontin and should stop cold turkey. Couldn't do that so I called an exaddict friend and he helped me through the process. Since I have been free and I mean free - I have not had any sweating spells! When I was on the lortab for several years, I didn't take it every day but I did notice an increase in frequency creeping up. I can't correlate the sweating with the taking or not taking of lortab, but I do know taking it made me feel better all over and sweating made me feel lousy so I expect the sweating occurred when I needed lortab. Possible? Now I am stuck without pain meds.

[FeatherMe]

Is difficulty swallowing pills, having them get caught in my throat and then coughing them up, and choking while swallowing water part of autonomic neuropathy?

FeatherMe

[FeatherMe]

It's hard to believe but the THINK TANK at Mass General is still scratching its head about some of my test results as I am! I did not have an abnormal EMG or NCTs after four years of recorded such abnormal tests. I do have decreased sweating indicating the small fiber neuropathy. The tilt table test has them. It wasn't normal, but it wasn't what they expected. I didn't even last standing for a minute. They are also referring me to a movement disorder doctor. I have an appt. mid-Dec.

They will continue to meet, there are three of them, during the week and hopefully by the end of the week I will have some more info. It is so frustrating. I will learn, I will learn, I must learn to live day by day and enjoy that day to the fullest and forget about whatever else does not need my attention. I was so sure I would have answer this time, I just put my hope in the wrong place. Whatever is wrong with this body looks like it's going to stay that way or progress on so I better make friends and stop being frustrated. I had a happy productive day until I heard the news or lack of news. Okay, so now I have to work at keeping my head focused on what is important - for me it's "Seek ye first the Kingdom of God." Had I done it all along I wouldn't be in this emotional mess.

[FeatherMe]

I think I have found the right place for me. I went to Columbia Presbyterian Neurological Institute yesterday and was pleasantly surprised with the doctor, his attitude, his plans, and he respected that I have some small degree of knowledge and was pleased about it rather than threatened by it. He realized we lived 150 miles away so he even did some testing for me at the last minute. I have two more visits scheduled and some blood work to get done here at home.

He pleased me as he was looking at the whole, and I mean whole, picture - all systems. I will also be going to a movement disorder person down there. While New York City isn't my favorite place, I can like it well enough for a few more visits. Looking forward to sharing results.

[FeatherMe]

I have been looking up the blood work he is taking. Much of it has to do with celiac disease and neuropathy. I am amazed with what I have read about celiac. I also see much of what he is checking is cancer related. Am looking forward to having this all put together. I found a relationship between celiac and small fiber neuropathy. Incredible. Will get back.

[FeatherMe]

I have since discovered that my brother has polyneuropathy (idiopathic); he's 3 years my senior. He also has tias, claudication, and COPD.

Going through some records in preparation for a visit to a vascular specialist, I discovered I have been diagnosed with mild to severe inflow and outflow disease in both legs. I have pain in my calves at rest. Both feet are numb and the numbness is spreading up the right calf. The SFN has reached the point where I can't tell my feet are cold unless I touch them with my hands. I have had a lot of cold sensations in my thighs as well as much weakness.

Body temps vary from 94.2 to 98.1 and that in just one day. I am trying to exercise as much as my messed up right foot allows in hopes of raising my body temp. I notice that my systolic pressure takes a nose dive with exercise.

Sweating a normal amount has returned for the first time in many years. It's the abnormal amount spells that still leave me weak and nauseous.

Raynaud's seems to be progressing from my finger tips to my fingers and hands. I get frustrated when I read these things, when caught early, can have the progression either stopped or slowed down. I was dx with this in the 80's but once again, no treatment has ever been given perhaps there isn't one.

Recent discovery baclofen was a big contributor to my dry eyes and blurry vision. I have stopped that. Sorry for the roaming should be sleeping!