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.
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.

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.