I had 2 mris and 3 emgs. The last emg showed some slight deterioration but the neuro didn't seem very concerned by it. Although he is an alleged PN specialist, I feel he doesn't think outside the box. I'm sure neuros at Mayo would repeat all the tests, which is fine with me.

I agree with you both...As most know I date a Dr. we do not talk medicine,
If I'm lucky we don't talk...I run into my Neuro in Best buy and we talk
about the supply's she is picking up,she is a hugger she hugs me and ok
I did ask if she would buy me a computer.Noooo was the answer.

But when I'm in that Neuro's office she should explain everything to me,
about my heath and she couldn't push me out i'm bigger than her...And
if I have to be louder...But we are in 9 10 pain fog,bring a friend,a mom,
anybody,go over your list with this person so if you forget,they can help.

But I will be honest,I have a wound Dr that creeps me out,I can't think around him,he's in a burn and wound clinic without enough Drs. and the nurses foat, (make more money) moving around so you can't depend on them.
Well anyway if there fast and you are creeped out,happens to all of us.

And they do retest if you want,i did,then,whoops do you have anyone
who will be able to help you,because you really do get tired and pushed
around Silverlady had a husband,I sorry did we ask.. Hugs Sue

Will Mayo do that whole approach though? See that is my concern because when I went to Cleveland I thought they would but didn't at all. They just really stuck with what I had rather then digging deeper. For myself that is why in the mean time I have started to work with a holisitc family med doc. He also does meds though. I have mixed feelings but he is looking into more dx then what I felt from the specialty docs. Sue I agree with you about bringing someone. I feel I have been treated better when my mom comes.

I have two grown daughters one of whom lives not too far from me. The other lives in Boston and she said to try to get an app't during Christmas or Easter break (she teaches @ BU). She'd be glad to come w/ me. Without her, I couldn't go out of state at all.

My understanding is that Mayo will do a thorough workup. And that should mean getting more MRIs, etc. If not, what would be the point of going? I don't think docs like to accept results of tests they didn't order. Also, if there've been changes in EMGs, blood tests, etc., hopefully, they'd want to know.

My mobility is so impaired I use a walker & even w/ a walker, I am terrified of falling. I'm considering switching to an electric scooter but somehow that feels like I'm accepting defeat. But you are so right about having a friend/relative to listen & write down questions, answers, etc.

Boy, I'd love to be dating a doctor!! Think of how you can bombard him w/ questions. How can you resist talking medicine with him?

I forgot to mention that Mayo's neuro clientele travels there from all over the globe. So their docs can't be too bad.

We don't talk about it because I was in that Medical rat race,at very
big hospitals for 25 yrs...So many Drs. move far out in the country,
to get away from it all,can't say I blame them.and then I have 3 who live
across the street,who are neighbors jogging by,even though 2 are my Drs.
I will call them by first names outside the office but never inside the
office..Dating a Dr. means calls at all times,and right in the middle of eating
dinner....But I like him,he is sweet,today he sent a bunch of wild flowers
and a vase so I would have to use my hands to clip and arrange,whew
I thought I would never get done ,but I did it.

Now about this scooter thing,I use a plaform waker,have for sometime,
but I also use a power chair,,it gets me on trains and through those
malls and out on my favorite trails..I look up at the rocks I use to climb,
with my Children and caves I use tio explore,it makes me smile..I do
not seee it as giving up...We all must live the best we can,,why it's
been wonderful for hauling groceries into the house..But most of all
when that gang of mine hits town all at once,I no longer say you go
I'll see when you get home,I go. Besides the grandchildren loves the
rides. We do what we must do,and yes i'm thrilled you have 2 Daughters
to help. Good one is near by,mine are all far away,why sometimes I'm
amazed how they have changed,each time I seen them...But I have a
web Cam to see the wee ones...Holidays are a good time to get in Hospital's

You have a great Mom D. she's a real Mama bear,has she been out
that way yet??? Best to all Sue

If you need someone to get you around inside Mayo, they will assign someone to push your wheelchair while you are there. All you have to do is let them know that you need help. Also, you do not need a wheelchair of your own at Mayo. We went curbside at the hotel, got valet service and they went into the hotel and got a wheelchair for me. Also it was freezing cold when we were there in Dec. last year. (40 below) They were careful to not let me sit in the cold. We always tipped the valet and the van drivers. Got us excellent service. The van drivers would go in at Mayo and get a wheelchair for me. My husband was always loaded down with my purse, medical bag, laptop computer. So they performed this service for us. Once we were inside, he would transfer all the "luggage" to my wheelchair and my lap and he pushed me everywhere. So I used the hotel wheelchair inside the hotel and to the van, then Mayo's wheelchairs inside Mayo.

And if you have to go to St. Mary's Hospital for any of your testing (I did), they have wheelchairs too.

But if you need help at Mayo, just let them know when you go to your first appointment.

Billye

Mayo had me bring CD's of all my MRI's, and CT scans. Also X-Ray films. They did not want the reports. They read them all over again and made their own decisions as to what the film said. They also order any additional MRI's or CT, X-Rays that they feel they need. I had to have a full body x-ray even tho I had brought my own films.

So they will order new ones if the doctor thinks he needs them. Daniella, don't worry, they will do a full comprehensive work up. Multiple doctor's all reading each other's notes. They have a computer system that is really unbelievable! Makes anything I've ever had done anywhere seem like it's gradeschool stuff.

(I edited this to be sure Fanfaire sees the post directly above this one too.)


Billye

Greetings Antonina
I recommend the Jack Miller center at the University of Chicago. I went to a bunch of the wrong doctors here in Chicago (podiatrists, orthopedic specialists, chiropractors, acupuncture, etc) who gave me all kinds of illogical explanations for my symptoms and no recommended treatments other than foot surgery. When I asked each one if I should see a neurologist, I was told, "no, not necessary." Finally I just decided none of them were making any sense and I went searching on my own for a neurologist which led me to Jack Miller. I picked a name from the list, called for an appointment on my own despite having no referral, and got in after about a 3-4 month wait. The neurologist I got is great, very caring, very knowledgable, and very up on the latest research being done including that at Mayo. I can't say I have the magical treatment that I might have wished for, but I believe I got a thorough bunch of tests and as accurate as possible diagnosis, given the fact I have an idiopathic auto-immune type neuropathy. The one problem I can see for you is that the tests were conducted over a several week period which would make it difficult if you were coming from out of town. The reason is that the test results of one test would lead her down a particular path of investigation that suggested the next batch of tests. Unfortunately, the bottom line, however, seems to be that the only thing all those tests do for you is give you a name to your condition. There's still not much effective treatment and I certainly don't see any possibility of getting better, only worse at varying rates of speed. Mine is "slowly progressing" whatever that means.
Good luck to you.

With all you have been through that your neuropathy[ies] are not worse is amazing! I have been on my own 'cancer trip' [and TRIP it is for a short while compared to yours].
Both rads and chemo's can and DO affect the nervous and immune systems...In the last 3 months I have been reading research papers that are now referring to cancer as an 'auto-immune disease'. I can only go HUH? or DUH? as the situation deems apt. As the cancer cells mimic normal cells and by pass normal immune systems. Then, the chemo and rads treatments kill what immune system one has and well a new mess occurs? Follow-up therapies are referred to as just that: Follow-UP. But it is a continuation of a chemo of sorts.
As for your situation? I just webbed up: Chemotherapy+neuropathy and found a few good sites....I tried Radiation Therapy+Neuropathy and only found references to issues of the optic nerve...
From personal experiences I know of many people who have had extensive chemo and suffer from neuropathies as a result. Chemo really IS an insult to your whole systems and can affect it in ways most docs aren't up to date on yet. My own Onco is also a Hematologist and that has worked very well for me as she is keen to my pre-existing autoimmune aspects which involve neuropathy and has been keeping an eye out for new wrinkles in the whole post-surgery life. A dual Onco/Hema may be the person to get an opinion from before doing the whole Mayo or Hopkins route. Some Onco's aren't really 'up-to-date' about it all. Sadly. It is like experiences most of us have with neuros -lump it, nothing we can do. Unh naw! Rethink this issue?
I live not too far from Hopkins and almost went there, but two other very good [not the rated best, but VG] teaching hospitals are even closer-I got an appt at one -then the total barrage of tests [for neuropathy issues, cancer was found 2years after the PN]. The good thing about getting the testing locally is you can pace yourself for the MRI's, Blood work, X-rays etc...to your own abilities. I was ready at that point tho - to go and have the whole smear done at once!? It all is a trade off you have to make and decide on. The difference is to me, finding one-ONE good doc who really listens to you and understands-actually TWO good docs made absolutely all the difference.
I will PM you about these issues soon. I will have to get permission from a non-board member, a friend of mine from here who goes to NYC frequently for clinical trials and had gotten excellent testing etc from folks there regarding the PN... Differing viewpoints are always useful. Have you checked out various cancer boards about 'neuropathy'? I know that bc.org has lots of references to the issue and has done a lot of good research about it, but it's not the only resource. I hope this helps you. I know it doesn't make it hurt any less! - j