Hi. I think starting and looking from a clean record is better. The docs need to come up with there own conclusion and ideas rather then just going with the other docs view. It just takes 1 who will try something different. I'm sorry how hard it is for you to get around. I can walk but in the airport I needed a wheel chair and it was very painful for me mentally and physcially. Anyhow I hope you can get as much support and help you can. I know at the airport they were super kind to me. I'm sure if you go to Mayo and call ahead they will have accomidations made for you. Like the others have said and I'm sure can give you places to stay.
Sue yes I do have the best mom. She is my strength and hope. Like today she was so happy I had a better day and went with my friend. I feel so bad what my pain does to her. She hasn't come yet. She will soon but I want her to come when I'm more able to do things though who knows. I want to take her to see David Letterman if I can get tickets especially on a day with pet tricks. She loves that. It would make me so happy to give back. I'm so homesick and at the start here had major issues. Lets just say when it rained it poored. How is your doc bf? Isn't he a heart doc?
Well good luck again

I know,i know,my goodnesss you are the age of my youngest,wow MN.,
OR. and for A time OK...I sent them off the youngest first,then the
second,and Now Ryan And Dr, Amy,he was the one,i told you must go.
Amy is a gem,when I see him look at her,well,I knew in my heart he
would follow her to the ends of the earth...And my other children have
been bessed as well.

Today i will hijack the forum,oh not the first time.. I put a candle in the
window this evening for my oldest Kate she would of 41 today,we lost her
to SIDS..She was a beautifull 9 month old in perfect health,oh this
is not written to make anyone sad...My so many yrs. have gone by,
do you forget never,my husband said we could give up and exsit or
battle on. ..Me no more babies,but now on Nov.26th Ryan will be 34,
So sweetheart Mama Bear will make it,and will wait,shoot get me a ticket
to funniest animal tricks,they are funny..Amimals are wonderful
look how many people have then on all forums,,

I don't know how to bring up UTUBE"s but may son made one awhile
back it's called Stanley hearts Peaches,it was a favorit and truly in
my mind shows true love,my Grandkittens are in it,when I feel bad
I watch it,ha it's wonderfull as are all you....hugs Sue

Sue I'm so sorry about your daughter. Many hugs and thoughts your way. I'm sure your a great mom. You seem so sweet and loving. Your kids are lucky. Its weird were all different ages but have such a bond. I'm thankful for that. I do feel blessed too with my mom and I'm sure your kids feel the same about all the moms and dads here. Nothing like a parents love.

Sue,
That was so moving. I can't imagine losing a child...it must be so devastating. I admire your strength & spirit.
Daniella,
I agree with you that even though we span many age groups, PN and other health issues unite us. It's great to have a place to communicate with other PNers.

When I gripe about losing my walking ability, my daughter reminds me that without the toxic treatments, I might not even be around to do any complaining. But it's hard to keep one's perspective when you miss how your life used to be.

Thanks to everyone for your thoughtful and caring responses. As the sixties' expression went, we have to keep on keeping on.

Thanks for bringing back that 60's thing,I use to love saying that,and it
is so true. Just keep posting.After all Mel lost her eyebrows. Good
grief!!!! And your daughter is very wise...Your daughters see your pian
but thay love there Mama...Hugs Sue

Hi. I know its hard to look at the positives. I have that issue too. My mom always tries to remind me of how far I have come.Antonina do you have any outlets that you like to do such as a craft for example? I'm not sure what you are able to do but maybe finding some new things and though its not the same as before and do I hear you it can help. Sue your so sweet too.

Daniella,
I started taking a sewing class about 3 weeks ago. It meets on Sundays for 3 1/2 hours. I've learned alot but truth be told, it's too long. My endurance starts to fade after about 2 hours. But it's a great distraction plus I'm learning to cut out & sew a pair of capri pants. I left early yesterday but got good info from it.

Once a week I work on de-cluttering my apt. I have a helper without whose muscle power I'd be lost. It's slow going but great for my mental health.
What do you do during your leisure time? Do you have a job? I miss my old job but I like getting up whenever I like.

Hi. Its nice though your pushing yourself and finding an outlet. No,I'm not back to work or school. Its very frustrating as you know. When ever I have a better day then a horrible one comes. Right now I do volunteer at the old place I was inpatient,go to groups,and I'm going to try to sign up for a knit class. I'm still so limited though have made progress. One day at a time. I do have some friends who are bums. Not to be mean but basically sit on there duff so at least we can go for coffee if I'm up to it. I try to be social but like today my pain is so high and have had a really bad bad day so that is out. I feel like people don't understand other then my mom. Especially at my age when I feel people think there still invinsible. Ok this is starting to be a rant. Sorry. That is neat about the capri pants. You can make lots of gifts for the holiday. What state are you in? See for me the plus of being in Ca now is that I can sit outside and that lifts my spirits and calms my anxiety which is through the roof. Ok many thoughts and hang in there.

It must be fabulous to have the sunshine & not have to bundle up in layers. I think any place that has a mild climate is good for PN. I become a shut-in during the winter here in NYC.

If I had someone to travel with, I'd go to Florida for Jan & Feb. but there's no one who could spend a couple of months there with me. The other factor is having to drive everywhere in Fla. since their public transportation is poor & cabs are outrageously expensive. I was there for a week in May and to go from the hotel to the nearest supermarket cost $16 round trip!!

I'm guessing from your posts that you can't work because of PN. And boy, can I relate to the good day followed by a bad day. This disease is so unpredictable and crazy-making. I don't ever know how I'll feel from one day to the next. I've had to cancel so many appointments with friends, doctors, etc. because of waking up feeling rotten---wobbly, weak, unbalanced. Yuck!!

This is also turning into a rant & I apologize for dwelling on negative thoughts.

Hi again. Sometimes as my mom says venting is healthy and it gets it off your chest. Anyhow I actually just moved to Ca from MI because of the cold. I loose circulation and go numb and the pain seems to be higher in the cold. It was between here and Fl where my gramps lives. I chose here cause the rain and humidity of Fl. I have a few friends here but still am homesick away from my mom. Hey you live in NY so does Melody on here. Maybe you live near. She goes to a support group for pn that maybe you should check out. Yeah no work or school cause of my pain level. Like you I have a missing dx I feel too so I have pn but maybe fibromyalgia,rsd,myofacial pain. I hope to find the answer before I hot retirement. Can you drive? I know when I came to ca before I got my car shipped I did a weekly rental car and it was not too bad expense wise. I know money may be a factor so getting help out there may be hard. I do think my gramps and he is super active but when he was sick had help come in. I think it was coverd under his insurance too. Many warm thoughts.