[pinkynose]

When my symptoms began the end of February they resembled Restless Leg Syndrome. It was not until the end of May when some of them started to lessen that the burning,stabbing, pins and needle pain of neuropathy became clear and I saw a Neurologist who confirmed it. I had some tests (Not a biopsy yet) and the neurologist told me it was most probably length dependent SFN.
The beginning of August my night time twitches (which I am still not sure if those were RLS or neuropathy) stopped. (I still get the beginning of those occasionally.) My burning is not as bad and not as constant as it was. I am so afraid of becoming hopeful because I have read that symptoms change. One leaves, another comes. Does anyone have experience with this so I may know what I can watch out for. It is not my desire to drive myself crazy, I just want to stay informed.

[Ragtop262]

Hi pinkynose,
I'm glad your feeling better. My symptoms do wax and wane, and the types of sensations change as well. After reading everyone else's experiences for a few months now, that seems pretty typical.

It seems that PN is one of those things that once you have it, you really shouldn't ever consider yourself "cured" - although you may go into "remission".

Just enjoy every day to whatever extent your current symptoms will allow. If nothing else, that will reduce your stress level - which seems to be powerful medicine for many.

[uglogirl]

Me too I had restless leg syndrome drove me up a wall thenstarted getting pins and needles. We're not guaranteed tomorrow since it is giving you relief enjoy it.


Uglogirl

[canagirl]

It seems that PN is one of those things that once you have it, you really shouldn't ever consider yourself "cured" - although you may go into "remission".

End quote

Oh.. That's so sad to hear. Despite my hopelessness I do still have a tiny bit of hope that I will heal. It's so hard to hear that it doesn't happen 😢

[pinkynose]

Originally Posted by canagirl

It seems that PN is one of those things that once you have it, you really shouldn't ever consider yourself "cured" - although you may go into "remission".

End quote

Oh.. That's so sad to hear. Despite my hopelessness I do still have a tiny bit of hope that I will heal. It's so hard to hear that it doesn't happen 😢

I know canagirl. I am trying not not give up on hope, just expectations.

[uglogirl]

Pinky Nose did u get my reply.?


Uglogirl

[pinkynose]

Originally Posted by Ragtop262

Hi pinkynose,
I'm glad your feeling better. My symptoms do wax and wane, and the types of sensations change as well. After reading everyone else's experiences for a few months now, that seems pretty typical.

It seems that PN is one of those things that once you have it, you really shouldn't ever consider yourself "cured" - although you may go into "remission".

Just enjoy every day to whatever extent your current symptoms will allow. If nothing else, that will reduce your stress level - which seems to be powerful medicine for many.

I found out a few nights ago that my twitching and night time symptoms hadn't really stopped on their own. I tried an experiment with my medication and I realized that the twitching, pins and needles, burning were still present, I had just been able to sleep through it. I was disappointed but I am grateful for this info as I have this to share with the specialist I see next month. I have begun to stop dwelling on being cured and have begun to enjoy my days instead.

[Ragtop262]

Originally Posted by canagirl

It seems that PN is one of those things that once you have it, you really shouldn't ever consider yourself "cured" - although you may go into "remission".

End quote

Oh.. That's so sad to hear. Despite my hopelessness I do still have a tiny bit of hope that I will heal. It's so hard to hear that it doesn't happen 😢

I never said you couldn't improve or heal - just that you shouldn't consider yourself cured. Whatever you find that improves your symptoms, or helps you heal - you need to keep doing it. Don't let your hard fought gains slip away by going back to old habits just because you feel better.

[Ragtop262]

Originally Posted by pinkynose

I have begun to stop dwelling on being cured and have begun to enjoy my days instead.

I think many of us need a little more of that attitude

[beatle]

Originally Posted by Ragtop262

I think many of us need a little more of that attitude

Easier said than done sometimes.