Small fiber neuropathy

Discussion in 'The Watercooler' started by flutterby, Jul 25, 2011.

  1. flutterby

    flutterby Fly away!

    I had the QSART test and tested positive for small fiber neuropathy. Not sure of the cause yet, or if there is a cause. Based on the tests I've already had, my neuro is thinking it's likely idiopathic.

    I'm not sure what it all means yet, but this explains a lot of my symptoms - but not all. I'm just relieved to finally have some kind of answer.
  2. susiestar

    susiestar Roll With It

    No idea what that is, but I hope there is a way to treat it or at least manage the symptoms. Just getting that answer can be such a relief, can't it? I am sorry that there is nother "something" but here goes.

  3. Mattsmom277

    Mattsmom277 Active Member

    I too don't really know what that all means but you seem calm so I'm guessing its not the worst of the possible things you were concerned about? Is this something that can be managed or something that has ways to ease your symptoms? Anything with "neuropathy" sounds uncomfortable at best!
  4. flutterby

    flutterby Fly away!

    I think if they told me I have cancer, I would be calm. I obviously have something and the not knowing - and no real treatment - and having my life on hold - has been horrible. I have always just wanted an answer so I could move forward. But, no, this isn't the worst possible thing at all.

    It doesn't explain everything, but it does explain a lot. I'm still reading up on it and don't know a whole lot about it yet. I see my GP tomorrow and will talk to her about it.
  5. Mattsmom277

    Mattsmom277 Active Member

    Even if its not the worst thing it could be, and even being happy to finally have "an answer", I hope they can find something to at least ease symptoms a bit. Neuropathy in diabetics for instance I know can be very difficult to cope with day to day, so I imagine it hasn't been a fun thing for you to be experiencing!!! I'm glad you have an answer though!
  6. Hound dog

    Hound dog Nana's are Beautiful

    Well somewhat of an answer is better than no answer at all.

    I did a quick search.......did not do much reading, more browsed, but seems it's both helped and aggravated by diet and foods you eat. Learning which foods do which may be a big in helping you feel better most of the time. Looks like there is quite a bit of info out there, which is good. Hopefully this info will lead to a good diet and treatment plan that will have you feeling more like your old self again.

  7. flutterby

    flutterby Fly away!

    I read several things today and didn't see any mention of diet - although it would make sense in terms of diabetic neuropathy. I'll look more tomorrow. Am too tired and my head hurts too bad to do anymore research tonight. My neuro wants me to do a 2 hour glucose test to check for diabetes. I've had my sugar levels checked (via blood draws) so many times over the years, that I think diabetes would have shown up by now, but I'm not averse to doing the test anyway.

    There's also one other thing that I want to be tested for that has small fiber neuropathy as a symptom, but is relatively rare and more so in women. I don't want to mention what it is until I've been tested for fear of seeming histrionic or attention seeking. However, it would pull everything else together, including the heart disease. So, we shall see what further testing shows.
  8. Steely

    Steely Active Member

    Please let us know how your appointment went today Heather - thinking about you - and hoping you get more answers
  9. flutterby

    flutterby Fly away!

    My doctor doesn't know much about it - including treatment. She does think I should be tested for the other thing because it fits, and because it's genetic and there is a 50% chance of it being passed to children. I need to call the neuro because his first opening for an appointment isn't until March, and he can order the test at the lab, I think, so I wouldn't have to wait.

    I did get a steroid injection in my shoulder because the tendonitis has flared up again in a big way, and will be doing my PT exercises at home.