I need opinions, please
 

PLEASE, PLEASE, READ AND GIVE ME YOUR OPINION:

I do not know what is happening with my peripheral neuropathy, Right after my 6 month check up with my neuro I started having problems (naturally). Before that, I could have about 3-5 good days per week. Now it is down to zero. My feet get really red after I'm up for a couple of hours. I can barely walk from the bedroom to the kitchen and den. I have burning pain with bright red skin, the stiffness in the toes and the feeling that my feet are too big for my skin. All the wonderful stuff I had when I was diagnosed with small fiber poly-neuropathy idiopathic 2 yrs. ago. (It was many years in the making.) :o

So when I can't take any more, into bed I go with my books and laptop but I feel exhausted also and typically never use them. I fall asleep 5 pages into a book. This part is new. What is happening to me??? I have an appt. with my pain doc tomorrow and my GP a week from now. But I'd like to get opinions from YOU as well. I am going on a cruise in a month and I have to get better!!! My neuro is good but has a terrible bedside manner but I will probably end of calling her - yuck.

Something I forgot to mention. I was started on 2 new meds: Mirapex for my RLS to replace the Xanax I've been taking AND just a few days ago started Detrol LA for bladder issues we are still working out.

Suggestions, anyone?????

Love to all,
nancy-h
(The same pain in the butt nancy-h from BT-1)

Nancy, I think your symptoms are unusual. I've been on this forum a good number of years now, and the color change you are getting isn't something I recall ever hearing before. It makes me wonder if there's something vascular going on--But I wouldn't want you to just attribute it to your pn without letting your doctors know. Perhaps you could actually see your doctor while your legs having changed color?

I know you like your new neurologist--have you asked him yet?

LizaJane

Hi Nancy
 

It sounds as if something more acute is going on right now. Just as an example, I have a GBS style neuropathy from a confused immune system. But I have PN in both hands and feet. One day I had to post because my hands felt like they were on fire. They also swelled up and looked like big gorrilla hands, and were very sore,inflamed and raw feeling. At first I thought it may have been PN behaving oddly. But I had the same thing happen to my ears and my elbows. It was some sort of acute allergic reaction to a cleaner I used at home. It lasted a good 2 weeks,and after it finally went away it felt like their was more damage to my hands for a while.

Are you sure your new meds couldn't be causing you problems? Have you taken or eaten anything out of the ordinary? Fatigue also suggests something possibly acute like an infection or an allergic reaction.

Nancy...It's Mon AM AND...
 

PLEASE call your docs about this...changes in meds CAN do strange things, some of them just that...strange others, not good?!

Just call them up w/a 'Um, Should I be worried about: A, B & C?' It's hard to keep it organized but I bet once you leave that message you will get a call w/in 2 hours...IF not, CALL AGAIN! Be persistent and if you get no response, call your GP and ask "I've not gotten a response afte X calls at X & Y 'o'clock' and do you have any Ideas? I bet You'll either be asked to come in rite away or told to go to ER...I don't know about you, but I would rather wait an hour to see a doc, than the 12 hour wait w/the 'UH, DER, Idunno' result from there. Hugs and good thoughts in the meantime & Promise you'll let us know how you're doing! - j

Um...... I was waiting to hear the comments you received from this Nance. Now I'm really kinda scared! Nance posted about this in another forum, and I posted back that I thought...well, here's what I posted back:
So.....evidently feet turning red ISN'T normal? One more thing to bring up to my Neuro on the 5th I guess.....

It just never ends.
Jan

The feeling of
 

having your feet feel that they are to big for their skin is exactly what happened to my hands when I had the allergic reaction.

My hands looked huge,very stiff and unable to use properly. They turned bright red and burnt much worse than my normal PN. They even looked damaged.

But the worst is that they felt that they were to big for the skin.

All of these feelings stemmed from an allergic reaction I had to a carpet powder I used the day before. But because it didn't look like a normal rash did, I dismissed it and thought it was my PN. I finally broke down and went to GP and they confirmed allergic reaction.

follow up
 

Nancy, you first posted on 9/24, and several of us were worried about your symptoms and wrote back. but you've not written since, and I have two reactions. First, to be concerned, but then second, to be annoyed. I mean, if you're going to take the time to post about something scarey, and we here take the time from our own lives to think about your life, your symptoms, and try to help, then it just seems at the least polite to acknowedge that we've paid attention.

It bothers me when people do this---post asking for help, and then walk away, as if it meant nothing to ask strangers to step in and make you part of their lives, without so much as a thank you or follow up on what they've decided to do.

Please think about this when you post. Thanks for any attention you pay to this.

I am sorry to have offended you.
 

Liza Jane,

I am very sorry to have offended you, that is never my intention and I will keep your comments in mind for the future. I did not remember to get back to the forum. I am sure you know what it is like to be in severe pain, it does effect your memory. Thank you for caring and I again apologize.

I was assured by my neuro and backed up by my pain doctor that the change in color around the area effected by my neuropathy (mid-calf down to toes) is a symptom caused by the neuropathy. It is common here because of our very high temperatures during the summer months. I have had very little relief from it but am determined to hang tough since it is my only option.

Thanks again, everyone, for caring and helping me with your comments.

nancy-h

coloured feet
 

Hi nancy
When l read your post it concerned me as l have had different coulours in my feet for year l thought it was just part of the pn, I was glad to read your last post because it confirmed it that it is part of the pn thank you dianne

No problem, Dianne
 

Dianne,

I'm glad that my last post helped your worry but if you have any heart problems at all, you may still want to check with your primary doc. My heart was given the whole run down in '03 when I had a huge anxiety attack. So my docs were not thinking heart when I contacted/saw them.

Thanks again for caring and helping me with your comments. Most of the people on this thread are, like you, very sweet but also concerned. It is those people that I truely let down. I feel bad but more stress = more pain so I must trust that my apology is accepted and I can take this life lesson with me as I move on.

Best Regards,
Nancy