Sally, you are too freaking funny!

I have been to Mayo Scottsdale 3 times, but in my case I already had a dx of Polycythemia Vera (in addition to the neurological dxs), and I was unable to take any of the chemos which go with Polycythemia Vera. I ended up take radiation p32 twice.
Mayo will give you all the tests from the various departments that they deem relevant. I didn't really want to see the neuro, as neuros have not helped with MS (except for the person who told me many years ago to take magnesium instead of Baclofen and Zanaflex, who helped a WHOLE lot--he was a neuro at Scripps in San Diego, retired now). The neuro I did see at Mayo I liked very much and I think he would be a very competent neuro for a new neurological patient...he agreed with me that I was doing my best managing my symptoms and he could do no more. But he was very intelligent. Unfortunately I do not remember his name.

If I were completely baffled by my condition I might consider going to Scripps in San Diego or the Cleveland Clinic, depending on where I lived and how easy it was to get there. Mayo Clinic is near Phoenix and will be VERY hot this summer--not worth doing until fall. San Diego might have an earthquake. I don't know about geophysical threats to Cleveland...New Madrid fault? Mayo Rochester might be the best bet.

But the best neurology I ever had was at Scripps San Diego, and that's about all I have to say....except that I had a BAD neuro there, too, in addition to the very good one. I think we take our chances what ever we try, and I would pray for guidance to do the right thing and that the good doctor will emerge whatever you try.


Mariel

Thanks, Mariel! Geophysical threats…….LOL! I live within the general havoc zone of the New Madrid, but the only quakes I have felt are from Oklahoma. They had one over a 4.0 late one night when it was very quiet and I was sitting in bed reading. At first I thought it was distant thunder, or a jet, but then my knick-knacks started rattling and the bed started vibrating, and it lasted quite a while. It really freaked me out, because I wasn't aware at the time that Oklahoma was even having earthquakes.

But you're right, I do take things like that into consideration! It looks like I will be trying to get into Mayo at Rochester. I've been told that if you can get a referral from a specialist you can get in quicker than if you self-refer, so I've got to find a dr who will get me fixed up. My FIL also told me my DH or MIL would need to go with me, but I really don't want to take anyone. I would much prefer to go alone. Is it feasible to get around by yourself?

Might be a good idea to have someone with you, unless you trust yourself to remember all the questions and answers.

Hope you get some relief!

Well, my MIL drives me nuts - she treats me like I'm 8 years old! It's not just because I have MS, although that made it worse, she does it to everyone. The older she gets, the worse it is!

My DH is just socially awkward. The last few times I've had surgery I made him stay home, because I can talk to the nurses and doctors much more easily without him. He has some kind of social anxiety disorder, or something, and when he gets nervous his behavior can be unpredictable.

My own mom is almost 85, and has had a couple of strokes. My FIL would actually be the easiest to get along with, but then we would have to have two hotel rooms. This is half my problem right now - I don't have ANYONE I can call on to help me out. My house is a complete pigsty. I mean not just messy - dirty! It smells bad.

Don't you just love MS? Years ago when my dad had a stroke, he was working on his speech and he would go around singing, "The Old Gray Mare She Ain't What She Used to Be." It usually came out as "the ol dray mare." Just about ran my mom nuts. But now I feel like that could be my theme song!

I've been to the Mayo Clinic Rochester. It's worth going -- you end up seeing many different kinds of doctors and they all collaborate with each other. I had a rheumatologist recommend me -- and the waiting period was 3 months for an appointment! So if you're going to do it, I would get on it right away because you might have to wait. I don't know if you have insurance, Medicaid or whatever but they were very efficient with all of the payment/filing issues. Good luck!

Thanks Natalie! It would just be really nice to be able to BREATHE! I do have major medical through my DH's employer and Medicare Disability. Any tips for making the most of my visit?

I think you might get in faster if you have a doctor refer you (but this was 7 years ago when I went). I would call the main number and simply ask what the quickest way to get an appointment would be.

If I remember correctly, I saw the neurologist first -- then was pushed on to see an infectious disease doctor, a sleep doctor, and some others. I had loads of testing done (including wearing a contraption that monitored my breathing and heart rate overnight). Once you enter the system it's easy. The key is to get an appointment to begin with.

Not sure what else I can tell you. Just go with a log of all of your symptoms and a list of questions a mile long! Bring a copy of ALL your medical records since this began. Mine was a folder thick (I put it all in a 3 ring binder) in chronological order from the beginning of my problems. I could then hand it over to the doctor(s) to examine.

I'm glad you have insurance. It shouldn't be a problem to have it covered. My insurance treated it as if I was seeing doctors and having tests in my own city (as if they were all local doctors). So there really is no excuse not to go!. All you have to do is get there and pay for a hotel to stay in. There were many reasonably priced hotels.

Too much energy?
 

I'll tell what I'd do with him and his energy. If he is living in your parents' home and he is mostly abled-bodied, he should pitch in and clean part of the house regularly.

I'm a quad and I can't move ANY part of my body but my head and right hand. Even from my chair though, I can sort laundry, load the dishwasher, push a Swiffer around to sweep, empty small trash cans, dust/wipe/wash accessible surfaces like tables, counters and sinks - even toilets. I can shake small area rugs, dust lampshades, water indoor plants or water the yard. None of it is easy, and even those things will probably be gone within a year. Progression sucks.

But he (and you) should do what you physically can to help. If you were able, you two could hire a cleaning lady or firm for 1 day to clean the house thoroughly so it would be easier to keep up afterwards. Individuals would be cheaper than firms like Molly Maids.

Good luck.

MsBluIs