Mayo refused to see me. What next?
 

Mayo (Minn) says my "condition" is too longstanding so they "can't offer me an appointment" at this time.

My NYC rheumy pooh poohs my desire to be seen there. He claims I can get the same workup here. Clearly, I do not agree. It feels as though I've been to at least half of NYC neuros, rheumies, pain clinics, PT clinics, on & on & on.

So, here's my dilemma...Is Mayo worth fighting for or should I look elsewhere? Keep in mind that my sx began when I started chemo in '99. For 10 years I've searched for a conclusive dx and have none. My sx are worsening and I can envision being wheelchair-bound before too long.

A friend offered to go with me to Johns Hopkins. I don't know how they manage out of towners. I'm hoping they have a kind of team approach that I believe Mayo has.:confused:

Have you been--
 

--to either the Cornell Weill Center for Peripheral Neuropathy in midtown Manhattan, or to the Neurological Institute at Columbia-Presbyterian in uptown Manhattan?

Both can give very extesnive work-ups, including testing most other facilities won't have (such as skin biopsy to determine intraedidrmal nerve fiber density).

Hopkins has temporary housing (walking distance) for a week or less, available, called 'McElderry House Lodging'.
For those who come in from out of town and have to spend a few days. There also is, I think (it used to be there)- a nice motel across the street from the 'Dome' on 'Broadway'

I sent my records to Mayo at the start and they felt the same for me that they could not assist. I was going to resend it cause so much more has happened spread and other conditions but now after many other hospitals am waiting. I know a lady who was going to go to Hopkins and I think has been before for this condition to see a specific doctor. I wonder if you would be able to send some of your records there to view before going. When I went to Cleveland Clinic I stayed in a hotel near and they shuttled back and forth. They gave special rates to the hospital patients so I am thinking Hopkins may do similar. Do you have any places near you like University hospitals or teaching hospitals that may be you can get another opinion before. I have been to places like Cleveland Clinic and ucla and my best doctor so far is out of a teaching hospital in my home state 40 min away. In any regards I hope you find relief and answers asap.

have been to both
 

Went to Latov's early on. He stopped taking Medicare so I stopped going. I may have already mentioned that I was not impressed. Also saw the Asian dude who was very sweet but seemed overwhelmed.

Went to Columbia where I saw the head of the EMG lab who kept wanting to perform more and more EMGs, whenever I reported a small worsening of my sx.

Bob, does Hopkins do a Mayo-like team thing?
 

I've only driven through Baltimore but if I go, I plan to make a crabcake pilgrimage. I hope the housing for out of area patients is close to good eateries.

In any case, I need to pursue this and will call Hopkins intake this week. I think you see someone there you like. I pm'd you awhile ago about your doc. Just need to know if JH does a more multi-disciplinary approach than what exists here.

Hi Daniella,
 

I'm sure JH or any other hospital would need to see my records. It's going to be a monumental task to gather all the test results, mris, emgs, etc. Thanks for the info about the woman who went to JH. Did she mention whether she was happy with her care? What did you think of the Cleveland Clinic & UCLA?

Hi. Just for the future I think it is very key to keep all records. I have a binder full. Also of all meds one has tried and what the results of them were good and bad. UCLA I thought was horrible. Beyond horrible. I saw a pain doctor there who just talked to me for 5 min and said do a scs and gave me a video that was it. Cleveland Clinic I saw a few people and was in their day pain program. I felt very rushed and it was there way or the high way and they did not follow up. My current pain doctor is the best out of people who wrote articles etc on my condition. I think it is because he was willing to work with me and look outside the box and not just go a long with what others said which many docs do. I often wish they would not look at my past records/reports so that they would not be influenced. Also he has been willing to try different things rather then throw his hands up or look at me like $ sign like I felt UCLA did. I will ask the lady who went to Hopkins how she felt cared for. Of course I think everyone is different. I know a girl who has had much success at Cleveland Clinic so I think one has to keep an open mind but also be cautious. Good luck

Antonina - Mayo wouldn't see me. I went to Hopkins and have been very happy with them.