You must be worn out be not outJack Miller is very good my neuro
helped start it,and plese don't forget Cleveland Clinci..Good luck,
Mayo is not easy,but i thought it was worth the battle. Sorry
fingers not working. Sue

I know ovarian cancer is treated with cisplatinum which causes peripheral neuropathy; has anybody told you that that is what you have? neuropathy from the meds?

There are lots of articles on the web, and in medline, about things that help cisplatinum neuropathy, but I think the summary of them is really the list of supplements in the "stickies" at the top of the page.

Perhaps Mayo rejected you because it seemed straight-forward?

Are you getting treatment for your pain? Is that the main concern? Tell us what you understand about the neuropathy and what is bothering you most. Have you read through the posts in the "stickies" section, to get an idea of what people do to improve from this.

If this is cisplatinum neuropathy, it would be a relief for you to know this, I think, because it means you nerves took one big hit, but that hit has stopped.

Also, I agree with your doctors that you can get everything you need here, in NYC. What you might not get is the reassurance you are seeking that everything is being done. I like the HSS group, as a whole, and my pain guy and neuro are there. Dr Latov, who specializes in neuropathy, I think is also there.

Here's a thought: You're a doctor, at the top of your field; you enjoy the stimulation of other smart doctors, but you also enjoy culture: the arts, theater, maybe opera, museums. Maybe you don't like all the arts, but you like having lots to do and lots of stimulation for your family. Would you choose Rochester, Minnesota or New York? Lots and lots of very smart doctors would choose NY over Minnesota. It's just a question of weeding through things, and finding the doctor that's a good fit.

Also, I had a full workup in NY before going to Mayo in 1999. You know what? Mayo did only a few extra things, and all of them unnecessary and unhelpful in making a diagnosis. They sweat-tested me--but I already knew I had autonomic neuropathy because of an abnormal tilt test---they biopsied for amyloid (which it didn't look like I had), and duplicated allt he tests I had in NY (BTW, I had my w/u at Joint Disease, downtown). They turned up nothing different. The only thing it did was serve to reassure me that I was in good hands here in NY.

Glenntaj knows a lot about NY doctors, more than I do; and Melody and her husband have had experience here, too. Maybe you could get advice on treatment at home from them.

is right could you tell us a little more about your pain,how do the Drs. help
with that. I love the Arts as well,but must go to St. Louis or Kansas City.
Although my little College town,is far from New York,there are so many
here in Columba, Mo. going to New York for help...Sue

Great Neuros at Barrow in Phoenix AZ. Might try there

Hi. I had sent my records to Mayo too who felt they couldn't help me at this time. So I went to Cleveland Clinic pain clinic and anestesology. I have mixed feelings on Cleveland but if you want to ask any ?'s I would be happy to answer. I'm thinking of resending my records to Mayo again. I have heard good things about John Hopkins though not for this issue but care in general. A very pro active approach but this I don't know for sure. Good luck.

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.