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

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

Dear Antonia;
If you contact Johns Hopkins, don't mention your fibro dx. They denied me on this although I told them it was just one of several misdiagnoses. Mayo also refused me but finally accepted me but I have to wait until January w/ Central Pain Syndrome. I don't know the cause but since one of them could be neurotoxicity due to a drug 2 & a half years ago, they originally denied me.
My symptoms have continually gotten worse while going from Dr to Dr, hospital to hospital & not getting any answers. Now I'm just trying to survive 2 more months, which seem like an eternity w/ this pain & other symptoms. I wish you luck.

Antonina, Melody usually posts when the meeting is for pn. If you email her she will be happy I'm sure to tell you about it. She always relays info to us about it and they have speakers too. If you come to Ca let me know. I live in Ventura which is about 90 min from La.
Gramps I understand the going from doc to doc issue and pain. I hope you get some relief soon and keep us updated on Mayo. Welcome too I see your new. Love the name I call my grandpa gramps. Hey are you him?Just kidding.

A little background is in order. In late ’98, started to have stiffness & pain in my legs. Then couldn’t walk, climb stairs, etc. Go on bed rest because doc says I have Epstein-Barr. Don’t improve so I see a rheumo. Dx’d with Polymyalgia Rheumatica. Take prednisone & that helps with the stiffness but still cannot walk.

By Jan. ’99, dx with ovarian cancer. Have surgery & lots of toxic chemo. Walking gets so bad I need a wheelchair. I get a bit better and need only a walker which I still use 8 years later. Current situation: Legs, feet & hips extremely painful, weak & heavy. Numbness in feet, calves, hands. Balance totally goofy & fall over at the drop of a feather. Have tried: B12 sublingual & injections, neurontin, elavil, prednisone, Tylenol, onycontin, and many more too numerous to remember. Physical therapy has helped to a small degree. Currently only taking synthroid for hypothyroidism. No other drugs for whatever is the matter with me.

Fanfaire,
After the Mayo rejection, I asked my rheumatologist (who heads the dept. at the Hospital for Special Surgery) to intervene on my behalf and he insisted that I can get the same workup here in NYC. He is very kind and well-meaning, but he is mistaken. There is no such Mayo-like workup available in NY. If there were, I would have found it. The neuro I see has no particular “clout” and the doc who initially sent my records to Mayo was my oncologist who apparently also has no clout.

Right now it seems that my one other option is to go back to the rheumo to try to change his mind. I think getting a letter of “medical necessity” is a brilliant idea. It certainly can’t hurt.