Aa
Diagnosed!
Hi. Everyone.
Well, Dr K called me this afternoon with the results of the QSart & QTilt tests. QTilt was normal. QSart was not. I have small fiber neuropathy. She said the areas where I have it, legs & thighs is very unusal, normally people have it in their feet. The tops of my feet do burn when it's really bad, but it started in my legs in 3/04.
She is sending me an order for a few more blood tests to see if we can figure out what is causing it. She's checking an antibody related to my elevated ANA, and she's checking vitamin B6.
This still does not dx my bowel problem, but one step a at time. I think I clould live with the bowel problem if I could be free of the pain in my spine, etc.
If anyone else knows much about small fiber neuropathy, I'd appreciate any input.
Sheila
Well, Dr K called me this afternoon with the results of the QSart & QTilt tests. QTilt was normal. QSart was not. I have small fiber neuropathy. She said the areas where I have it, legs & thighs is very unusal, normally people have it in their feet. The tops of my feet do burn when it's really bad, but it started in my legs in 3/04.
She is sending me an order for a few more blood tests to see if we can figure out what is causing it. She's checking an antibody related to my elevated ANA, and she's checking vitamin B6.
This still does not dx my bowel problem, but one step a at time. I think I clould live with the bowel problem if I could be free of the pain in my spine, etc.
If anyone else knows much about small fiber neuropathy, I'd appreciate any input.
Sheila
I wish I knew something about SFN. It's now on my very long list of things to learn about. We'll do it together. I found the comment of Celiac disease very interesting and wonder if you should do a gluten-free diet on a trial run. So many people find they feel better on it despite the diagnositic testing.
Congratulations. I'm am truly glad this is not MS, but remember the MS Mob Family rules about leaving the forum!!
((HUGS)) Quix
Congratulations. I'm am truly glad this is not MS, but remember the MS Mob Family rules about leaving the forum!!
((HUGS)) Quix
Hi, Quix.
Thanks, that's great, I'll be glad to learn about SFN together.
Rich and I were talking this evening, and we agree that I should do a gluten-free diet and see if it helps.
Don't worry, I'm not leaving, I love all of you too much to leave. You're my family....all of you have been there for me when no one else could understand...you guys understand cause you live in this pain everyday, too.
Hugs,
Sheila
Thanks, that's great, I'll be glad to learn about SFN together.
Rich and I were talking this evening, and we agree that I should do a gluten-free diet and see if it helps.
Don't worry, I'm not leaving, I love all of you too much to leave. You're my family....all of you have been there for me when no one else could understand...you guys understand cause you live in this pain everyday, too.
Hugs,
Sheila
Hi, Craig.
No, I haven't had that biopsy. Gosh, after the Deep Muscle/Nerve biospy, I hope I don't need it.
I'm sorry you hurt everyday, too. Makes life hard.
Most of the time, it seems like life goes on without me.
Sheila
No, I haven't had that biopsy. Gosh, after the Deep Muscle/Nerve biospy, I hope I don't need it.
I'm sorry you hurt everyday, too. Makes life hard.
Most of the time, it seems like life goes on without me.
Sheila
Hi, T.
Dr. K is incredible! She hasn't given up on me. My Neuro here at home, did. She said she wanted to see the results of the next blood tests, before, (or if) she makes any med changes. I told her my D.O. put me on Valium & Tramadol and I am feeling better. Not great, but a lot better. Low on Valium, so I've had to cut a few doses 'til I get a new 'script, so pain is returning.
Hugs,
Sheila
Dr. K is incredible! She hasn't given up on me. My Neuro here at home, did. She said she wanted to see the results of the next blood tests, before, (or if) she makes any med changes. I told her my D.O. put me on Valium & Tramadol and I am feeling better. Not great, but a lot better. Low on Valium, so I've had to cut a few doses 'til I get a new 'script, so pain is returning.
Hugs,
Sheila
I always had the impression that doctors didn't like to do nerve biopsies because of the possibility of nerve damage, but I looked up the neurodiagnostic skin biospy (http://www.massgeneral.org/neurology/biopsy/index.htm) and it seems to be a different sort of thing. Very interesting--I had never heard of this before.
I did have the QSART (stands for quantitative sudomotor axon reflex testing and also seems to be known as Qsweat, which appears to be a brand name). This is not an invasive test at all and was not painful. Or at least it wasn't for me--maybe if you have more feeling in your feet it would be :) There is more info at http://millercenter.uchicago.edu/learnaboutpn/evaluation/autonomic/qsart.shtml
I know when I saw the PN neuro he told me that the majority of people who have peripheral neuropathy from unknown causes have painful small fiber neuropathy that starts at 50-60+ years (which I think was one reason he didn't think I had idiopathic peripheral neuropathy). I have the impression this went the other way as well and many cases of small fiber neuropathy are idiopathic.
One thing I read when I thought I had PN was that the percentage of people who end up being diagnosed as idiopathic varies widely so it's probably worth it to find a doctor who is thorough because as far as I can tell, if they can't find a cause, they can't do anything except symptomatic treatment.
Yorkieville, I hope your doctor gets to the bottom of everything that's going on.
I did have the QSART (stands for quantitative sudomotor axon reflex testing and also seems to be known as Qsweat, which appears to be a brand name). This is not an invasive test at all and was not painful. Or at least it wasn't for me--maybe if you have more feeling in your feet it would be :) There is more info at http://millercenter.uchicago.edu/learnaboutpn/evaluation/autonomic/qsart.shtml
I know when I saw the PN neuro he told me that the majority of people who have peripheral neuropathy from unknown causes have painful small fiber neuropathy that starts at 50-60+ years (which I think was one reason he didn't think I had idiopathic peripheral neuropathy). I have the impression this went the other way as well and many cases of small fiber neuropathy are idiopathic.
One thing I read when I thought I had PN was that the percentage of people who end up being diagnosed as idiopathic varies widely so it's probably worth it to find a doctor who is thorough because as far as I can tell, if they can't find a cause, they can't do anything except symptomatic treatment.
Yorkieville, I hope your doctor gets to the bottom of everything that's going on.
Hi. I was wondering if you had a "Neurodiagnostic Skin Biopsy"?? I just found an article from March 2006 stating that was the emerging new diagnostic tool for small fiber neuropathy.
The biopsy allows one to actually look at the small nerve fibers. The article also says that large fibers in the thighs are effected after the feet are involved. So anyway, just wondering if the biopsy was done.
I hope you continue to get more answers. My feet hurt every day so I know what you mean...
Craig
The biopsy allows one to actually look at the small nerve fibers. The article also says that large fibers in the thighs are effected after the feet are involved. So anyway, just wondering if the biopsy was done.
I hope you continue to get more answers. My feet hurt every day so I know what you mean...
Craig
I DON'T REALLY KNOW WHAT TO SAY.
I TOLD YA DR. K WOULD FIND A CAUSE. WHAT I HAVE READ IT SFN CAN CAUSE GREAT PAIN.I HAVE RADICULOPATHY AND IT CAN CAUSE GREAT PAIN.
DID DR. K. HAVE A COARSE OR PLAN ON HOW TO TREAT YOUR PAIN LEVEL.
I'M GLAD SHE IS IMVESTIGATING A CAUSE.
WISH I HAD MORE TO OFFER YA
SENDING YA HUGS AND PRAYERS
PS....THE NEW FORUM CONFUSED ME---NOT GOOD TO CONFUSE ONE THAT CAN HARDLY SEE,BUT I DO LIKE THE NEW COLORING.EASIER TO SEE!!!!!
T-LYNN
I TOLD YA DR. K WOULD FIND A CAUSE. WHAT I HAVE READ IT SFN CAN CAUSE GREAT PAIN.I HAVE RADICULOPATHY AND IT CAN CAUSE GREAT PAIN.
DID DR. K. HAVE A COARSE OR PLAN ON HOW TO TREAT YOUR PAIN LEVEL.
I'M GLAD SHE IS IMVESTIGATING A CAUSE.
WISH I HAD MORE TO OFFER YA
SENDING YA HUGS AND PRAYERS
PS....THE NEW FORUM CONFUSED ME---NOT GOOD TO CONFUSE ONE THAT CAN HARDLY SEE,BUT I DO LIKE THE NEW COLORING.EASIER TO SEE!!!!!
T-LYNN
I don't know if you knew it, but your post, posted twice, so I fixed it for you....
I have perhriphel (sp) neuropathy in my left thigh and in my feet as well as having MS...so go figure...
Your elevated ANA makes me wonder if you still have something more than small fiber neuropathy going on. This also would NOT explain your bowel problem...does it?
Heather
Your elevated ANA makes me wonder if you still have something more than small fiber neuropathy going on. This also would NOT explain your bowel problem...does it?
Heather
Hooray!!! I am so glad someone is getting to the bottom (no pun intended) of your pain issues! It does really only take one good doctor who is willing to put the time and energy into looking for answers for our problems and your doc has given me hope again!
I wish we could clone her and send one to each of our cities . . . wouldn't that be great! I hope that she figures out the bowel issues soon. For now a gluten free diet can only help.
Take care and I will be thinking of you!
Kristin
I wish we could clone her and send one to each of our cities . . . wouldn't that be great! I hope that she figures out the bowel issues soon. For now a gluten free diet can only help.
Take care and I will be thinking of you!
Kristin
GLAD YOUR STAYING WITH US.
YA DON'T WANT QUIX'S MOB TO GET YA.
CALL AND GET YOUR SCRIPTS REFILLED,THERE'S NO SENSE IN BEING IN PAIN!!!!!
T
YA DON'T WANT QUIX'S MOB TO GET YA.
CALL AND GET YOUR SCRIPTS REFILLED,THERE'S NO SENSE IN BEING IN PAIN!!!!!
T
Hi shoshin.
The QSart was only mildly uncomfortable for me.
My small fiber neuropathy started 4 years ago this March...I was 51.
Thank you so much, I think, if any doctor can get to the bottom of what's causing it, it will be Dr. K from Cleveland. She is very thorough.
Sheila
The QSart was only mildly uncomfortable for me.
My small fiber neuropathy started 4 years ago this March...I was 51.
Thank you so much, I think, if any doctor can get to the bottom of what's causing it, it will be Dr. K from Cleveland. She is very thorough.
Sheila
Hi, Jazzy.
Thanks. I feel like maybe there is light at the end of the tunnel. At least, this is a beginning.....
Sheila
Thanks. I feel like maybe there is light at the end of the tunnel. At least, this is a beginning.....
Sheila
Hi, Heather.
First, thanks for fixing my post. I saw that it posted twice, but I didnt know how to delete the 2nd one.
PN is pretty painful....I know the SFN is intense at times.
No, it doesn't explain my bowel problem. But maybe the antibody test Dr. K is ordering related to my elevated ANA will show something. You know, I never thought the day would come that the one thing in life I wanted was just to go to the bathroom.
I read something that may explain the bowel problem. 16% of people with SFN have Celiac disease. My D.O. says I am gluten intolerant, the blood tests for Celiac were negative, but I also read that is often the case, and the only way to dx it is with biopsies of the small bowel. My g.I. doc was satisfied with the test results, so my DH & I think it would be a good idea to resume a gluten free diet and see how I feel.
The new site design has me very confused. (Not hard to do these days.)
Sheila
First, thanks for fixing my post. I saw that it posted twice, but I didnt know how to delete the 2nd one.
PN is pretty painful....I know the SFN is intense at times.
No, it doesn't explain my bowel problem. But maybe the antibody test Dr. K is ordering related to my elevated ANA will show something. You know, I never thought the day would come that the one thing in life I wanted was just to go to the bathroom.
I read something that may explain the bowel problem. 16% of people with SFN have Celiac disease. My D.O. says I am gluten intolerant, the blood tests for Celiac were negative, but I also read that is often the case, and the only way to dx it is with biopsies of the small bowel. My g.I. doc was satisfied with the test results, so my DH & I think it would be a good idea to resume a gluten free diet and see how I feel.
The new site design has me very confused. (Not hard to do these days.)
Sheila
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