[dmouse]

If you have SFN in the hands, and your town gets hit with 12 inches of snow, make someone else brush it off your car and make someone else shovel the end of the drive after the snowplow goes by. And while your at it, after they do all that, let them clean out the freezer when the meat you're getting out for dinner causes most of the contents to fall out onto the floor....

Just so you know.

BTW, if you don't have Neurontin or Lycira, or even Prednisone, what works for the pain?

[shalynn]

Oh my! It sounds like we've had some of the same weather. We had two inches of ice, then six inches of snow!! It really stinks! I say, if you can let others help you out.

As far as the symptoms go, I've found that ice seems to help my feet and legs. Sometimes, Ben Gay will even help. Anything to jumble up the pain signals in my body.

I don't have a dx of SFN, just some sort of neuropathy. Did you run out of your meds?

Take it easy.

Shalynn

[dmouse]

No, I wasn't given meds. Doc wanted me on IVIG, but no insurance - can't pay for it... still looking into IVIG Living Magazine...

[nide44]

IVIG off the bat?
No meds first to see what happens?
What is your Dx?
What testing have you been thru?
Have you looked at www.lizajane.org for the downloadable charts and tests?
Have you gone thru the 'stickies' at the top of the topics page?
There's a lot here to digest, and it may take a bit of time, but well worth it.

[Leslie]

Originally Posted by dmouse

If you have SFN in the hands, and your town gets hit with 12 inches of snow, make someone else brush it off your car and make someone else shovel the end of the drive after the snowplow goes by. And while your at it, after they do all that, let them clean out the freezer when the meat you're getting out for dinner causes most of the contents to fall out onto the floor....

Just so you know.

BTW, if you don't have Neurontin or Lycira, or even Prednisone, what works for the pain?

DMouse - I get alot of relief from soaking in epson salts. I usually soak every night before bed time.

[dmouse]

IVIG right off the bat... had me a bit upset at first. Over that now.

My dx is SFN possibly caused by auto-immune disorder. Only they don't know what AI since all I have is a high ANA titer. All the patterns were negative.
As for the tests, tons of labs including 2 hour glucose, HIV, hepatitis, celiac and most of the standards: CBC w/differential, metobolic panel, etc. Neuro tests were punch biopsy on three sections of my leg, EMG, Tilt Table and QSART.

Neuro's nurse told me that since I've had the symptoms/damage for several years, I can't regain what is already damaged, but the IVIG might slow/stop the progression and that it should help with pain management. I asked her about other options for treatment and she told my Neurontin or Lycira. I asked about prednisone and she told me they don't treat SFN with that. I'm thinking of talking to my primary about different options, once I understand more. He has a better "bed-side" manner than my neuro and his nurse!

I've been trying to read up on the info in the stickies, and on the web. You're right, it's a lot to absorb. I'm also trying to figure out what I should do now. I'm a graphic designer, lost my job in Feb 08. Didn't realize at the time but it aggravated the neuropathy in my hands on my busy days (pain level 10) so it's a good thing they eliminated my position. But now I need to find work again soon and not sure I can go back to that kind of work. Not ready to go after disability... would only bring in @$600/mo. There is a lot for me to digest with all this...

[dmouse]

Originally Posted by Leslie

DMouse - I get alot of relief from soaking in epson salts. I usually soak every night before bed time.

I have one of those parafin baths for hands. I'll have to dust it off and try that!
Thanks again!

[jsrail]

Originally Posted by dmouse

If you have SFN in the hands, and your town gets hit with 12 inches of snow, make someone else brush it off your car and make someone else shovel the end of the drive after the snowplow goes by. And while your at it, after they do all that, let them clean out the freezer when the meat you're getting out for dinner causes most of the contents to fall out onto the floor....

Just so you know.

BTW, if you don't have Neurontin or Lycira, or even Prednisone, what works for the pain?

dmouse, thankfully we don't have those issues down here in the desert! lol Though I've noticed my SFN (which nows covers all of my body) reacts badly to the hot sun beating down on my skin during our summers (okay, most of the year! lol) here.

I use Neurontin (3600mgs a day-the max allowed humans), and also Methadone for the pain (30mgs right now). All the lower level pain meds don't do anything for me as I have a high tolerance issue, which also presents it own problems.

There is a long list of meds folks around here are using, it seems that they work/don't work for each inividual. I tried a Fentanyl (sp?) patch, but ended up in the ER with a severe allergic reaction (thanks to my wife for saving my life!) that decided breathing was not necessary for me! :-)

Good luck with your search and I hope that you find something that works for you.

Jay