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.

Would you feel ok pm'ing me w/ the name(s) of who's treating you there? How long were you there? Did you get a thorough workup and did you get a definitive dx? Thank you!

I go to Hopkins too.
My doc isJohn Griffin (head of neuro dept)
jgriffin@jhmi.edu
His sect'y is Denise Cowager
dcowger@jhmi.edu
I also see his P.A., Tami
(been his PA for 6 yra and is good)

Dr Cornblath is also reputed to be very good.

Bob,
Great info! Thank you very much.

IMO, Mayo isn't that special.

The wait for every single test is outlandish. (I had a CT and it was over an hour long, and the dolts couldn't even get my vein properly!!!)

Blood tests, it took 2 persons to draw.

... I mean seriously.

And on top of all that waiting they didn't figure a damn thing out. :mad:
They said if I progressed they'd want me to go back so I could do a spinal tap and nerve biopsy.

WELL.. I live in WI.. I am not driving 3 hours to do something that I can do in my own city.
So, I've since progressed and had the spinal and nerve biopsy (in my own city).

I go back to the neuro on the 8th.
And probably won't go back to Mayo again.. cause I don't particularly feel the need.

Unless you have some UBER strange case, I wouldn't fight to get into a large teaching hospital like that.
Just use the lizajane spreadsheets and figure out what testing you need on your own.
Some blood tests will probably need to be sent out though, like my city although large did have to send out some of the blood tests.

Just a note
Before any spinal taps or 'sural' nerve biopsies, have a
"Skin Punch Biopsy" done. Minimally Invasive, no pain,
no after affects. (small nerve testing)
If its not done in your facility, Johns Hopkins has a mail-in kit,
with instructions on how to do it and how to send it back to them for
microscopic analysis.

NY
 

I'm from NY and have been to Mayo, and have to say they did nothing that was not already done here.

The most important part of getting diagnosed, to me, is downloading the charts I posted at lizajane.org and getting the doctors to send you all your lab results. Then go through the charts and fill in your results and see what tests you have not had, which are indicated for your type of neuropathy.

With the charts in hand, you can ask your doctor to do those tests on you.

But write everyone you've seen and ask for copies of all tests. Keep a looseleaf.

Doctors have responded uniformly well to the charts, so if you haven't used them, please give it a try.

Forget about Mayo, is my suggestion. We have fine neuros here, and a good general neurologist, not even a pn specialist, who is responsive to your concerns will get you the correct tests.

I've just been to a new neuro @ weill and he seems willing to work w/ me to see which med(s) provide some relief. As I mentioned in another thread, he tried doxepin and the s/e weren't worth the small relief it gave.

I see him on Dec. 16 and will be sure to pay attention to your charts to suggest tests I would like.

I have a spinal mri scheduled for this Saturday (mskcc runs these things 24/7). I'm wondering if it will disclose a worsening of the stenosis which showed up on an mri done 3 yrs. ago. I kind of hope that that's the cause of my deteriorating mobility since it will at least give me a clue to the reason for it.

I am from the midwest and went to Hopkins and they did nothing, not even blood. Waste of a flight and hotel room. I get the same care here in the midwest, and not at Mayo but another Academic hospital setting with an autonomic lab and good neuro dept. I am not saying that Hopkins or Mayo are not good, it is just unless you are going to be ongoing, it is really not that productive.

Hmm, we all must feel we need to travel, LOL.

I am fortunate to have a good research neuro and have been with him for 5 years. It took a long time for my disease to really show its stripes, and now, finally, I have serological markers of autoimmune disease, which was, my neuro's (and Glenn's) first hunch.

If you can get into a nearby academic neuro dept., one that will do a skin biopsy, that is probably pretty top tier.