Neurologist app. yesterday
 

I tried a new neurologist yesterday. She is doing more blood work and urine tests and I am trying lyrica again. I tried it once several years ago for my interstitial cystitis. Instead of the lyrica making me sleepy, it makes me feel wired and I can't sleep well at night. I woke up several times last night so will have to see if I can take it and if it will help my PN pain.
I told her the problem I have with my feet getting hot when I am walking and have enclosed shoes and socks on. She acted like she had never heard of that symptom and said most patients say their feet are cold. My feet get cold too but one of my main problems is how they heat up when I am on them and have shoes and socks on. I don't know if this neurologist knows anymore about PN than my last one did but she did spend a good amount of time with me. I go back tomorrow for the blood work because she wants me to go without eating.

My feet are exactly like yours. Feel frozen all the time, but when I wear enclosed shoes and am on my feet or walking they heet up and hurt like crazy. I wear sandals with socks. Or an athletic shoe like Keens that have cut outs. Some Tevas are made like that, too.

Same heer hmm PN is complicated and I almost hate going out
because of that..hugs to all Sue Ps to cold anyway!!!!

Thanks, good to know I'm not the only one. It bothers me that this neurologist had never heard of PN feet heating up like that. I wish I could find a neruo that is a real expert in PN and doesn't just claim to be. I may end up trying one about 3 hrs. away.

My experience is that doctors are not interested in the details of our pain......

My feet get so cold and like no circulation. I usually wear socks and tennis shoes till bed. The issue is when they get cold it takes hours to warm up. I agree about the docs sometimes I wonder if they are listening or just zoning out.For some reason I feel many docs must be lucky with no health issues or they would be more comforting.

Daniella, I might have suggested this before, but I use down booties to warm my feet up -- available online. The next best thing to narcotics for my pain!!!!

Hi Elsie,
I have interstatial cystitis also and I take Lyrica. At night I take 1 75mg pill and 1 50mg pill......AND elavil to get to sleep. You might try that if you are still having problems getting to sleep.

Hi Roxie, I have seen you post on the IC message board I go to. I'm sorry you are having so many health problems. I am so discouraged about my health. I have no idea why I developed neuropathy. I have tried elavil in the past for IC and couldn't take it because it made my heart race. I was on neurontin for years for IC but it stopped working and did nothing for my neuropathy. I am now on 50 mg of Lyrica twice a day but so far can't tell its helping either condition. I don't know what I'm going to do. My feet hurt so bad and with fibro and IC along with the neuropathy, its really hard. I'm sure you can understand.

HI Elsie I totally understand! Having IC was bad enough and then the Neuropathy and Myopathy started......and we can't figure out what caused them!
Have you tried Elmiron for the IC? It's helped me a lot! I'm going to try to wean off the Elavil now that I'm doing so much better from the Elmiron. My dr. thinks I don't need it any longer....guess time will tell!
Sorry to hear your feet are hurting so bad. My PN pain is in my arms and legs.
I hope you get things under control.....I know that's no easy task! Best of luck!

Roxie, I use to take elmiron orally but it caused some bad side effects so I instill it directly into my bladder along with marcaine and sodium bicarb. I try to do these treatments daily and they do help. However, I've gotten several bladder infections as a result of the instills and I wonder if the levaquin I've taken for the infections could have caused the neuropathy. I read on the levaquin site where neuropathy can be a rare side effect. I'm so glad the elmiron is helping you! I wish you the best of luck also!

Elsie,
That's great that you can do the instills......I've never had the guts to try that.
I'd never heard that about Levaquin......but I don't doubt it. So many things we take cause so many side effects.....and then we start mixing drugs.....and who knows what all that does to the body.....it can't be a good thing!
I know I'm lucky to be able to take Elmiron without all the side effects... and never did loose my hair and am SO thankful about that!
I do wish I knew what caused my Neuropathy......but guess I'll never know :(

Susan I just love those slippers they don't hurt,and these Drs.
in the hospital all they do is repeat same questions .Put it in the
puter and read it..Roxie I wish I knew,we could all get rich and get
out of this place. Wait a min. did I just sing a song...:confused
Hugs Sue

Okay, I'll bite.

What is an Instill???

Melody

Mel,
An Instill is medication put into the bladder thru a catherater.......and you do that at home yourself......OUCH!!

You do it at home??? with a catheter??

you mean like where you place a tampon??

Oh, I think I get it. I once had bladder problems and I had to get a cystoscope, and he put a tube inside me (using water), it didn't hurt, but when he was finished, and I had to go pee, my god, the burning...

Some people do this to themselves??????

I'm confused.

Melody

You put the cath in your urethra to put the medicine in the instillation into your bladder. Yep they do it themselves, at home......but I never had the nerve! LOL

Nope in the little hole you pee out of,that's brave and tricky. Could
do it years ago not now,but the Dr. just did...Hope this didn't
offend oh the h-ll with it. Elsie your a strong person,but we all are
in our own way..Hugs Sue

LOL! I got a chuckle out of this thread. It's really not that bad and its not painful. I think I could do it with my eyes closed!

Well as a nurse i could do it with my eyes wide open,now there to dry
you wouldn't call me lol..:confused: I might get the wrong spot,that's
a ouch...Hugs to all Sue

I couldn't do that with my eyes opened, closed, cross-eyed, whatever!!!

Oh My God.

Brave women, who can do this!!!

Mel

Here's a salute to all brave women!!!

http://dl8.glitter-graphics.net/pub/...rcvys2w760.gif

That's a beautiful picture! And I totally agree that women who can do instills deserve the world! I'm just lucky that I've never had to learn to do that!

All the more power to those
 

who do what they have to just to 'get by'!
:hug::hug::hug:'s to all of you, Far braver people than I by far! - j

The things people go through on here is unreal. I understand the hell pain but have not had the treatment or surgery many of you have. I have not heard of many of these things. Until I got pn last year I had never heard of it. You all here are my inspiration to keep fighting. Thanks for the booty idea too I am going to go look online. Thanks for that lovely picture too Melody.