[Mamadebski]

Hello everyone,

I've been watching these boards for years & knew I had stuff going on - I just wasn't diagnosed with anything yet. Over the past couple of years I have been going to Mass General Hospital in Boston, MA, seeing a highly renowned pain researcher there. She has diagnosed me with small fiber polyneuropathy. At first, my skin biopsy results came back just above the fifth percentile, then the second time around they came in lower, and now this third time my numbers indicate only 35 (units) per mm - which Is below the 1st percentile. I also had skin samples sent to Cornell for study about whether or not there was an autoimmune disease indicated. Apparently I have the indicators for this also. I have believed for many years that there has been something going wrong with my body - now I finally have proof.

My concern is the speed of progression of my neuropathy, and I am now scheduled to see a rheumatologist for the first time since my diagnosis. Does anybody have a list of questions that would be appropriate for me to bring to this Rheumy?

Most recently I read "The Spoon Theory", written by Christine M - it has helped me immensely in feeling a little more in control of my life & how much I pace myself. I have felt so guilty for so many years because I had no way to really verbalize the way my body has been betraying me - sometimes having energy to do certain things but not others, then having absolutely no energy for days on end. The sheer amounts of pain I have had to tolerate has left me exhausted halfway through most days. Things I used to do so easily, like yard work and shoveling are so difficult now. At least now I can explain to my kids and family about the number of spoons I use up every day. I highly recommend this theory.

Thanks for listening.

[Sham]

I don't believe there is anything that can tell us about progression for sure as every one is different. I understand when it seems to progress more rapidly at times, it is very scary. I love the spoon theory, it really puts some perspective on some things. I am sure someone on here can help you with some questions to ask. I hope you get some answers.

Originally Posted by Mamadebski

Hello everyone,

I've been watching these boards for years & knew I had stuff going on - I just wasn't diagnosed with anything yet. Over the past couple of years I have been going to Mass General Hospital in Boston, MA, seeing a highly renowned pain researcher there. She has diagnosed me with small fiber polyneuropathy. At first, my skin biopsy results came back just above the fifth percentile, then the second time around they came in lower, and now this third time my numbers indicate only 35 (units) per mm - which Is below the 1st percentile. I also had skin samples sent to Cornell for study about whether or not there was an autoimmune disease indicated. Apparently I have the indicators for this also. I have believed for many years that there has been something going wrong with my body - now I finally have proof.

My concern is the speed of progression of my neuropathy, and I am now scheduled to see a rheumatologist for the first time since my diagnosis. Does anybody have a list of questions that would be appropriate for me to bring to this Rheumy?

Most recently I read "The Spoon Theory", written by Christine M - it has helped me immensely in feeling a little more in control of my life & how much I pace myself. I have felt so guilty for so many years because I had no way to really verbalize the way my body has been betraying me - sometimes having energy to do certain things but not others, then having absolutely no energy for days on end. The sheer amounts of pain I have had to tolerate has left me exhausted halfway through most days. Things I used to do so easily, like yard work and shoveling are so difficult now. At least now I can explain to my kids and family about the number of spoons I use up every day. I highly recommend this theory.

Thanks for listening.

[Dr. Smith]

Originally Posted by Mamadebski

Does anybody have a list of questions that would be appropriate for me to bring to this Rheumy?

Hi Mamadebski, welcome.

Having no clue/idea what you may/may not already know, that's a tough one. I still ask my doctors questions, but they mostly have to do with answers I can't find online, and if I can't find the answer online, there's a distinct likelihood that the doctor doesn't know either.

One approach I (would) take is to research/learn as much as I can about my condition, and develop my list of questions from that research (things I don't understand or information that seems vague). I usually start with the obvious...

questions to ask doctor about small fiber polyneuropathy

...and go from there.

My concern is the speed of progression of my neuropathy,

In your case, I would also try...

small fiber polyneuropathy speed of progression

Wikipedia is (IMO) another good starting point, followed up by links in their References and External Links and more credible/reputable sources. Since I've been on this site (NeuroTalk), I now include the archives in building my list and in the next step...

Time is limited, of course, so what starts out as a big honkin' list will have to be prioritized and pared down to something reasonable.



Doc