I had mega doses of both Taxol (5 doses) & Carboplatin (6 doses). Because the Taxol was so damaging, it was stopped after 5 infusions.

It’s pretty clear the combo caused whatever is going on with my mobility & balance problems. The mobility deficits started about 6 months prior to the cancer dx so I asked my current neuro to test for paraneoplastic syndrome (autoimmune reaction to a cancer wherein your immune system attacks other {non-cancerous} organs) and which sometimes lasts beyond the removal of the tumor. It was negative.

I haven’t had the tests you mentioned. The main reason for a Mayo visit is to have a battery of tests which would be evaluated by a team working in conjunction with one another. Right now I have had scattershot tests, no one to coordinate them, no one who suggests what approach to take. Also, I’ve had such a variety of opinions: I have had the following dxs: PN, fibromyalgia, polymyalgia rheumatica, etc. MRIs, emgs ---inconclusive. To date no one has suggested IVIG or a duragesic patch or TENS. Maybe the team at Mayo will explore many more options than I’ve had so far.

Would you pm me with the names of the HSS neuro & pain person? Also, how have they helped you…ie, meds, p/t, etc.?

Daniella: I think you’re smart to re-submit your info to Mayo. All they can do is say “no.”
And at least you’d have given it another shot. Please let us know what response you get.

Thanks. You too. I'm in a similar boat as my dx is all over the place and I really need a team approach I feel. Its so hard when all the docs just look at there area but won't go out of the box. Good luck.

Daniella,
We certainly are in the same boat. Maybe one or both of us will get lucky. Here's hoping!!

My hands are a mess right now,and new computer,burry eyes,so please
excuse...I am feeling pretty much the same way,Drs. are not reaching
out of there feilds now..They get the blank expression when you ask a
question,they roll their eyes,and pass you on..

I worked for 25 yrs. as a nurse,maybe because it was ER Truma,maybe
that was the difference,i don't know....But it's like they forgot they
all went to Medical School and don't remember the basics or could
it be a shortage of time...Or fear of lawsuits,but i feel like i'm caught
up in a totally different world...I have said it before,I hope i told
every patient I was there and they could squeeze my hand as hard
as they had to..The orher night when I was in the car accident,I
saw very little of patience,very little of the truma Dr. Just a scared resident,
and I told him how to pop my shoulder back into place,without
doing more damage...I feel they give you far to many unnecessary exrays,
You get the feeling there training,someone and they sometimes are.

I hope you both get rhere,and i truly hope you get the answers you need.
But remember Dan there's always my idea of a commune in Rochester,MN.
for all of us,right next door to the Mayo Clinic...We will barn storm them
in a huge but nice group,we will not give them time to say no,get those exrays just in case...Then we will move on to a warmer more interesting
place like Yorkiemom would like to do. I am not making light of your fears
and pain,I just get so frustrated,I feel it and know it too!! Please if you
want this,try again...to all Sue

Hi. I really am so frustrated because I really feel docs never look out of their area. I know they went to school for so long and had to do their rounds so I feel they should have some knowledge or at least give direction. I had one neurologist his famous words were That is not my area. I think he took the express course. I understand if they truly don't know but at least give a referral.
Antonina have you had those tests that were inconclusive reperated? I ask cause when I did I got more information. On the side not of the pain docs I have been too. I wish they too would look more into the dx and maybe refer out more. Good luck.

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