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Autonomic Small Fiber Neuropathy

Jan 19, 2016 12:19 AM

Does anyone know if hand tremors and syncope are associated with this disease? In my case, sarcoidosis caused it even though I also have fibro. The sarcoidosis docs in Cleveland told me there is a direct causal link to the sarcoidosis. Can't afford anymore trips back to the Cleveland Clinic. Had to go back up there (born and raised there) to have the asfn diagnosed. I'm living in northern Georgia now and most docs here sort of freak out cause they don't seem to know what sarcoidosis is. The only specialist here either doesn't know much or simply doesn't care. Doesn't seem to be much web information covering all of the symptoms.

Second, does anyone know about the impact that mold exposure has on the nervous system? Just had a run-in with the pa at my allergist's office today who didn't want to test me for indoor mold allergies. Yeah, I know I'm allergic to everything outside, but I live inside. Don't these guys understand that? Sorry, that was frustration coming through.

Third, could recent syncope episodes prevent me from knee replacement surgery? These knees are so-o-o very bad. Should have been replaced 12 years ago. Pain doctor used four letter word to describe condition of knees. If can't have surgery, will have to go back to using power chair and my car can't use an attached chair carrier. Using chair instead of walking will also speed up the process to osteoporosis.

Any info will be helpful. Think I'll have to gear myself up for more fun!

Jan 19, 2016 3:49 PM

You guys on this board are great and would have provided some kind of an answer if you could. Well, I guess that autonomic small fiber disease is almost as perplexing as sarcoidosis. My only question is why couldn't I get something normal? But then, guess just about everyone on this board asked a similar question. If I get any reasonable information, I'll share it. Thanks.

Jan 20, 2016 7:59 PM

Donamel, I have tremors, and I have neuropathies, but to my knowledge I don't have asfn. I've lived in GA all my life, and sadly I'm learning our doctors aren't very familiar with many major illnesses other than heart, blood pressure, cholesterol, or cancer. Sad!!! Very few even know the risks of Sjogrens complications, which I have now. I have nodules coming up all over my body since the dx it no one seems concerned except me. Lol

I wish I had answers to help you. I pray nothing will stop or delay your surgery. Hugs!! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 21, 2016 2:54 AM

Thanks for the post. I sometimes feel like I've entered the medical twilight zone since I moved here. Medicare is different here and quite restrictive. It's a shame that I had to go all the way back to Cleveland Clinic a little over a year ago to find out why my blood pressure could go from 92/55 - 150/95 within a short time period. Then temperatures range from 96.3- 100.1 as my normal range. Am having some interesting symptoms but don't have the money to go there right now and don't understand them. It's the darned syncope and other issues related to sarcoidosis.

Feel extremely cold. Having syncopal episodes more frequently? Very concerned.

Pain pattern is changing wildly.

Jan 21, 2016 7:09 AM

donamel, my brother has sarcoidosis. He also has osteoarthritis, psoriatic arthritis, psoriasis covering his whole body, type 2 diabetes, diabetic neuropathy, and so on.... He is a very sick man. He goes to a lung specialist for his sarcoidosis, an infectious disease specialist. He catches bacterial illnesses that put him in serious condition really fast due mostly to the sarcoidosis and/or his psoriatic arthritis. He can't be treated with biologices, which would help with the pa. Doctors say it would kill him because of the sarcoidodis. His medical doc and his lung specialist both told him his lungs were s***. His heart is extremely enlarged because of his lungs struggling for air.
I could write a book on him, honestly. He is a fighter though. They told him he at never be off if oxogyn. He is only using it at night now!!
I think that his case is rare. He has so many compounded disease issues. But he inspires me daily!

Jan 21, 2016 7:39 AM

I also meant to mention that my neurologist, who is a real jerk but finally telling me what he thinks I'm having this horrible nerve pain that I have all over my body, has told me that I have small fiber peripheral neuropathy, and wants to send me to a group of specialists at Barn's in St Louis, no. if I don't have improvement with the new meds. We'll see...

Jan 21, 2016 7:45 AM

Sleeping beauty,

Jan 21, 2016 8:05 AM

Flappys, did they tell you what specific neuropathies that you have? That's another thing, you have to nail these doctors to give you a complete and direct diagnosis. Many don't follow standard medical protocols. For example, anyone with sarcoidosis, no matter where it is in the body, anyone with sarcoidosis should have a chest xray at least once a year. Our local pulmonary sarcoidosis specialist has never ordered one for me. None of the pulmonologists here have done that. One was so busy treating my central and obstructive apnea and restless leg syndrome that I guess she totally forgot about x-rays that would have shown that I had ground glass opacities and nodules throughout my lungs. I had to go to Cleveland Clinic to discover that. I think there are many doctors down here who are guilty of malpractice.

Jan 21, 2016 11:57 AM

Okay, have an appointment with my pcp this afternoon. Can I speak with him intelligently and not like a blubbering idiot, so that I can let him know what's going on with me? Last night was really bad. I could hardly navigate myself from the recliner in the living room to my bed that is perhaps 15' away. What's happening here?

Thank God a friend called and talked me back into some sense of normalcy, however he was upset that I refused to call 911. Why do I do that?

I'm not able to describe what happened last night so I asked him to send a text that I can show to my doctor. Wow! The terms he used tells me just how scared he was.

Another friend of mine sent text at my request. Big question--is what is happening reason to put off surgery on the 2nd?

Jan 21, 2016 8:58 PM

Donamel, no one has said anything except Peripheral neuropathies. My rheumy doc suspected the sjogrens is the cause, while the pcp suspected my fibromyalgia, and the Ortho doc suspected my spine issues. Lol, typical!

Jan 21, 2016 8:59 PM

I suspect your doc will delay surgery until they know what's happening. Hugs & prayers you'll get answers soon! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 22, 2016 7:49 AM

I wrote out a response, then it notified that someone responded to a different message and wiped out my reply to you. I'll do my reply later because I'm just frustrated. All that time to write a reply and now it's gone.

Jan 22, 2016 7:50 AM

Surgery is not delayed.

Jan 22, 2016 8:09 AM

Donamel, when is your surgery date? And can you tell me what happens to you when you have nerve pain? Mine is so crazy. I'm actually paralyzed at times, literally! I wish I could add a video on here so I could show you what happens to me. I had my husband record it the last time. I have nerve pain at some level all the time. Sometimes feels like it pulses through my whole body, sometimes it's only my hands and/or feet, then there are the times when I literally cannot move to raise my legs, arms, head, or anything. When these spells happens, all I can do it cry and wait until it passes. It scares the mess out of me!!! My neurologist wants me to have testing done For a rare syndrome called porphobilia.

Jan 22, 2016 10:14 AM

Donamel, I'm glad you don't have to wait. I'll be praying all is well for you! Keep us posted. Hugs!!! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 25, 2016 7:10 PM

Sarcoidosis that doesn't go into and stay in remission during the first three years is rare for a rare disease. Mine started in my liver 40 years ago, moved into my lungs and has now caused the autonomic small fiber neuropathy. The pain that I get is a shooting and burning pain. I also get numbness and tingling in both hands. What is really weird is that my heart rate, blood pressure and temperature are not in control. For example I had a temperature about an hour and a half ago, then it went down below normal, and then it's now normal. My physical therapist was here earlier and I told her about the temperatures. She looked at me as if to say there is no way you're going to have surgery with these temps. My response is that I would probably never have surgery if I waited for the temperatures to even out. I'm off of anti-inflammatories to insure continuing healing from the shoulder surgery and to allow the knee the best opportunity to heal.

Why our symptoms don't seem to match, that's the crazy thing about sarcoidosis. The autonomic small fiber neuropathy behaves differently from person-to-person as well. What we really need is to have body transplants.

I feel so bad for what you are going through. I wish that there was something that could be done to wipe out all of the pain and agony of everyone who is on this board and others who are not on it. I'm also so grateful for those who read our posts even though they themselves are in agony and yet respond. These are truly special people.

I wish and pray that you can get a diagnosis and relief from your symptoms.

Jan 26, 2016 11:09 AM

Donamel, Thank you for explaining your disease. Even though I researched it I wasn't able to understand it. At least not until you described it. I truly hope and pray all goes well and they don't cancel your surgery unnecessarily.

I couldn't help but chuckle at the thought of a body transplant. After all we would be taking away our diseased body to replace it with a dead one! Lol
Have a blessed day! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 27, 2016 7:02 PM

Flappy and Sleeping Beauty, you two together have a wicked sense of humor (lol). Must be because you've suffered so long. It will take me a little while to digest your messages, but I'm game and will get back to you on them. Remember to research this kind of issue with Medscape or a similar source that had scholarly articles and with the specific symptoms. Not trying to belittle your research efforts but I don't know you well yet. So please bear with me and know that I'm not demeaning you. Sarcoidosis can be so simple some people never know they have it and it may kill others, like the late comedian Bernie Mack.

By the way, if I get a body transplant, I'd like to be a little bit taller. The hospital wants me to have a junior walker, that's for a kid and not for a 222 pound adult!!!!! Lol.

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