Please hang on? Get as much done as best it can be done...to as much as you can stand. You know well, how important this is in the long run. I truly admire your strength and steel-magnolia like will to get thru all this. Just imagine tho...all the things that can be 'checked off the list' as NOTs and AREs! Sometimes it's a small comfort compared to how you really feel, but at the same time, you have top-notch proof it 'ain't in yer head!'
As for the MRI w/contrast? My own esitmations and feelings about that test are: STIFF afterwards! Because the rooms are COLD and you can't even wiggle a toe. As for the Heart Scope test-thing? I'd had it 'out-patient' near home, and while they put you out for it, there are no real side effects [usually] other than a teeny bit of sore throat. THAT mite be a bigger issue for you, so...ASK about prep and follow-up preventative measures-tho...don't allow yourself to become more vulnerable than you are.
I understand that it mite be good to 'wait' for the spinal to be done at home...just so long as you KNOW the samples are gonna go to Mayo tho, for evaluations...best to be consistent here? My own spinal stuff went to Mayo and Athena and both results came up the same....Best to have that 'double back-up' at times-ya know? I know that I'd gotten the start here where I live at a big-city hospital...but 80% of the tests were 'farmed out' So's I could do one on Monday, Tuesday and Friday...and variations the following week...but the ordering doc got all the reports and if any result were 'off' I'd have been retested.
The sweat test thing, what a STRANGE thing! I am soo glad I missed that! AND the tilt-table thing. I'm posting under a separate thread web-sites that tell one more than they ever wanted to know!
I am glad that you and your husband/friend [you know what I mean!] got out last nite. A good break from being 'under the scope'! Keep strong, get as much possible done, then....GET HOME SAFELY! We all care about all of that.
Hugs, Heart and HOPE! Thanks for letting us all know what has been going on. After all, it could be 'our' turns next? The more we know, the better we can get thru it all, learning from you.
Hummm? I do NOT think I'd do well on the 'tilt-test'? I guess it's cause I'm all ready off-center? Hugs again! - j

pardon my lack of capitalization....one arm is uncapacitated right now...not a problem.

fanfaire i agree that u should get as much done up there as u can....having most tests at one research facility is the best medical care around.

if they tilt your head up and do not suck out fluid during the lumbar puncture, and let it drain it takes longer but u have no or less head pain. i had mine on a tiltable table, 20cc taken-no ill effects....however the tilt table test i flunked..that is icky for me.

you r also having transesohageal echocardiography...a good idea.

keep us posted.

u r in 4 more sno i think...we r in the 2-4 inch range with a low of 2 degrees tonite...not counting windchill....also watch 4 saturday...sno and freezing rain is possible 4 me....u r 3 hours west and a titch, not much north of me....hang in...it is hard 2 get into mayo---u r fortunate...i know it doesnt feel that way rite now.

i had a biopsy 2day---cant use arm 4 2 days....pain in the butt...however i am fortunate 2 get such a high level of care....sorry 4 2 posts but i will timeout otherwise.

this is lke txt mssging.... r we bffs, lol

also r they doing the skin biopsy....have u had that...emgs do not pick up small fiber neuropathy...my emgs r normal. r they doing all the bloodwork..i assume u had the lip biopsy and it was abnormal...sorry i cant hit any cap shift key. i can not use my left arm 4 a few days...god, net withdrawl, lol.

Hi! Sneaking in a short reply before my neuro consult. Sat around 4 hours today waiting to get in to the ENT consult, but they couldn't fit me in.

They've decided against a nerve biopsy for now. Will be asking if my diabetes might have caused the neuropathy. I've had the diabetes under excellent control since 3/2005, so maybe that has improved the situation?

The tilt table test was interesting. They had a hard time getting my hands and feet warm enough; I don't know why that's important, but they had to put heat packs on all my limbs. My blood pressure did drop when I was tilted, but I don't know how much it has to drop to be considered abnormal.

Did the TEE (can't remember how to spell what it stands for) this morning, the heart ultrasound with the camera in a tube down the throat. They were careful about the amount of sedation since I react to it sometimes, so I was mostly awake for it. I overheard them talking about something on the screen and I could kinda see it, but I was too out of it to really comprehend if there was a problem or not.

Unfortunately, I have three consults left but no time left this week. The ENT consult wasn't until next Thursday, and the other two are in January. So I am going home this weekend, I have rescheduled the ENT consult for the same date as the pulmonary one, and I will come back here January 2nd because my husband has New Year's Day off and we can use it as a travel day, and I will try to squeeze in the final appointment with the rheumatologist on the 2nd if possible.

Unless the neuro finds something new this afternoon or the ENT dreams something up, I am all done with tests. So that's something.

Better go get ready to see Dr. Uhm.

fanfaire

Have a safe trip home, watch the weather.

Yes honey be very careful on the roads,why because we like you.
You did very well,it could be the Diabetes that contributed to the
neurobathy..Mine has been in control for some time,but ya just never
lmow. You did well,get home and get some rest.oh and tell Your
husband he's a good guy...Hugs to you both,and all Sue

Have they determined anything about the seronegative Sjogren's? Do you have Sjogren's or not?

Have a good trip home, be very careful. I know it was all hard and physically demanding. Hope it was worthwhile. Get some rest.

Billye

Polyneuropathy has long been acknowledged to be a 'result' or at least what I would call co-morbid with diabetes. I have also read that even tight blood sugar control was not a variable in progression.

Why do you think that is that strict sugar control doesnt always stop the progression of PN? Does inflammation breed inflammation in a vicous cycle?