Rochester

[cordellia]

greetings from mayo-land,

thank you all for your notes and well wishes.... please forgive this painfully long rambling narrative-- tired and a bit unfocused.

the hotel (springhill suites: clean/not pretty) is minutes from the mayo. free shuttle service to and from hotel makes our lives easier.

the rochester locals have been very kind and courteous---lovely people. good food is local grocer with a large selection of organic

food--a respite from the mayo offerings. about a 1.5 miles from the mayo.

MAYO

the support staff that we encountered at the mayo are well trained, very patient oriented and helpful. most were knowledgable and keen to share their expertise.

the appointment: we received a call, from the mayo, on march 18th--notifying us of appointment (neuro consult) on march 22nd. we dashed about trying to ready ourselves.

we were initially told to plan on being in town for 3-5 days, later 5-7 days....most recently through april 1st. we are grateful to be here.... it is just a bit longer than we were anticipating.

however, we are glad to stay on if we are moving toward a diagnosis and a workable plan....

neuro consult: she was awkward and seemed unable to make eye contact with me. at times i did not think that she was listening.... she focused on her computer monitor and

literally did not look up until it was time to do the physical exam.... however (after reading her notes) it is clear that she was listening and processing all that i said... she ordered

up a battery of test and consults: TTT, sweat test, 24 urine, blood and endo work ups, EKG and BP monitoring/holters; consult w/ an EP, consult w/ NP who administers

a chronic fatigue program at the mayo. (though i do not have pain nor CFS ---neuro thinks that i can benefit from reconditioning)

neuro was frank--said that she felt we could/would not know what caused the onset of my symptoms. she is focusing on orthostatic hypotension/labile

blood pressure/exercise intolerance we want to understand WHAT is causing this to occur and she is focused on treating all symptomatically.

NOTE: she prefers to meet with patients alone during the initial consult. (my husband was angry and perplexed when a nurse informed him that i would be seeing the neuro alone--and that he

would be invited in "later" during the course of the appointment. he was never summoned. (foggy brained me forgot to request his presence)

wound up in the ER on day 2 of our visit. experienced pain in chest upon inhalation. labile BP: 105/63 and minutes later: 178/100. lab techs summoned paramedics to endo lab--

where i was about to begin catecholamine testing-- PM's insisted that i needed to be transported to the ER. spent 12 hours in ER (so missed some scheduled tests) diagnosis: pleurisy. better now.

day 3: the hot box: sweat test was unpleasant. but far more thorough and professionally executed than the testing that was performed at beth israel in boston. tech was kind and aware....

helpful and mindful of the fact that being semi naked and covered in powder is not my thing. testing lasted for 42 HOT minutes. the marvelous fact is that you can stop

at any time-- a simple shout out calls a halt to the proceedings. my results were termed normal. we were surprised--as i do not sweat--usually turn a brighter shade of pink and collapse....

to date: holters documented: labile BP (no surprise there) hypotension: brady and tachy, some SVT, some SVPC

too soon to tell what any of this will lead to-- in terms of an actual diagnosis. will meet with neuro on the 1st to review test results and to sort through it...

with my best to all,

cordelia

[juliegee]

Oh Dear Cordelia-

You have been through the wringer. Whisking you to the ER in the midst of testing!!! So glad you are there Sounds like you will be there a while. Please post & keep us updated as you are able. I am sending good thoughts, prayers, and hugs your way.

Julie

[comfortzone]

Hi Cordelia ~ Well you are in very good hands...& I am very interested in what everything shows for you. I did the Mayo process last August - I went from the 3 day visit guesstimate to a full 2 1/2 week stay... my choice though as I wanted answers yesteday ~

I too have the very labile b/p ~ in fact just as you say -- extraordinarily high and then low in one day - for months and months - only cranking up so bad as to change meds over it all - and then having that backfire... one week much too high - the next week so low I can't get out of bed for 1/2 days at a time...

Yes may they get to the why's of it all... I know with the catecholamine testing I had a very vigorous rise in them when going from lying to standing.....so position seems to be part of the issue ~ I think small fiber neuropathy also has something to do with mine - Mayo found that too.

Reconditioning through a chronic fatigue program sounds interesting. I know in the UK for EDS'ers they have full on institutions that admit you for a loooong time - if I remember right it's at least a month - maybe 3? That is to recondition with specialized PT and have a team approach to helping the patients... can't remember if you are hypermobile or not?

Anyway your area of focus is exactly what my Mayo doc is focusing on ...labile b/p - the lows, deconditioning or exercise intolerance...so for my case it's been really just tweaking meds, increasing fluids, losing weight, and somehow getting myself a routine for wellness -- I can't seem to get a handle on it all - hoping your doc can afford you some concise answers that provide consolation and tons of hope to feel better....

Gosh going to the ER while at Mayo! I sure hope you are feeling better from the pleurisy stuff - getting sick away from home can be scary - but you did it with class - at Mayo! That sweat test sounds very challenging - glad you got through it... I just had the kind with little leads attached to arm and leg - a very simple kind of thing - you got the big guns!

I'll ask my physical medicine and rehab doc about any available reconditioning programs available in AZ Mayo- might not be any - I never heard of that here before ~

Anyway - you might already know - but if not - you can daily go and pick up your medical records and review them...that way you can ask your doctor better questions at your final wrap up....

Blessings to you - feel better soon --- Glad you are getting the tests and helps you need thus far..

[Chaos]

Thanks for the update and the informative posts! Glad you are getting the full work-up and hoping that it gives you some answers.

I found the testing at Mayo to be much more thorough and precise (for lack of a better word) than at other centers. They repeated a lot of tests I'd had run before but when they did them, they got different answers than I'd gotten on previous tests. I was wondering if it was because they were more precise in their testing technique. Maybe that's why they want to do their own testing and not just accept previous studies?

Anyway, glad you having a generally good experience (although ER is never a good time!) Hope you hold up ok through it all. Unfortunately my testing flared my symptoms back up again. Here's hoping that doesn't happen to you.

Please keep us posted!

[Guest tearose]

I hope you get answers and some help to develop a good treatment plan.

I had Dr. Fealey and he was incredibly professional, thorough and dedicated in taking a holistic approach to finding and developing the right treatment for me.

Make sure you follow up by phone and resolve any questions soon because the volume of patients that go through there make it hard for the docs to help you if a lot of time passes.

best regards,

tearose

[janiedelite]

So glad you've found the experience helpful so far. I hope you get some much-needed answers!!!

During your follow-up with the neurologist, you may have test results that could indicate further examination. Don't hesitate to ask if further tests need to be done. We ended up staying an extra week after my initial GI motility tests were very abnormal in order to rule out causes besides dysautonomia (my mom has small bowel cancer). It was worth the extra expense and hassle.

My sweat test was normal too, but other dysautonomia tests were more conclusive.

Let us know how you're doing. I hope the pleurisy clears up soon and that you may be able to re-take some missed tests.

[Jan]

I think Dr. S was ordering tests as she was talking to you is why she was focused on her computer.

She ordered all the standard tests, so who knows how much she was listening to you.

When I saw her, I felt kind of dismissed. She spend quite a bit of time with me, but alas she just summarized me as, "our research shows you will improve with in 2 years." Like it was no big deal since she sees so many POTS people. So no big deal that life as I knew it was over and that "improved" isn't the same as recovered.

I hope you get better answers than I did.

I had a friend who went to the Mayo for POTS and he was referred to PT and got lots of great leg exercises and then that PT talked to his PT when he got back home to make a plan for him. If I had known that, I would have asked to be referred to PT. Maybe the CFS person will be just as good and can follow up with a PT when you get home. I would ask that person about follow up.

I had no follow up with anyone at the Mayo. They wouldn't return my calls or answer my emails. I told my primary doctor this he called and wrote to them and got no follow up even though he was the referring doctor. My doctor was rather upset with them.

I would ask your Mayo doc about following up with your primary doctor. It is great to get a diagnosis, but it would be even better to have someone your doctor can consult with after you are home.

[janiedelite]

I was told during my last appointment with Dr. Fealey that it isn't their practice to follow up with home physicians. He did make lots of suggestions in his notes of our visit which have been helpful for my regular docs. Nine months after my Mayo visit, I ended up being hospitalized for chest pain and elevated troponin. I'd just upped my mestinon to 180mg/day a couple of weeks before. The local cardiologist was able to get in touch with Dr. Fealey who spoke with him about my case after pulling up my Mayo file. However, neither doc could find a connection between the mestinon and the heart issue. Still, it was helpful that he was available.

[comfortzone]

While my physician visits at Mayo ~ the coordinating doctor and the docs I was referred to went well...I had one visit with a PT that went really awful. I told her my issues with my hips, my four joint replacments, my EDS, my periodic or intermittant need for a cane or walker due to flare ups of a pain that know one can nail down as to what the cause is.....the PM&R Mayo doc ordered the PT.

She asks, "well have you done PT before?" Wow I could have pasted her LOL! NO WITH 2 HIP REPLACEMENTS AND TWO KNEE REPLACEMENTS AND TENDONITIS, BURSITIS, ARTHRITIS, EDS I GENERALLY JUST DO WHAT SUITS ME, & THAT SURE AIN'T PT, KNOW WHAT I MEAN? hahahaha! right?

I calmly told her yes for the better part of two years I have been in PT with sporadic breaks - but pretty much a mainstay in my life...yet I'm still having lots of musculoskeletal issues.

She states, "well to be honest, if you have had so much of it why are you here? you must know all there is to know"

At which point I kindly gave her Dr. Tinkle's book on EDS - and said, "here - you might learn a bit about EDS from this book & then you'd know better why I'm here"

She glanced at it - declined - and I left the appt. ticked off ... then she said, "oh by the way I won't charge you for today's visit ~ you need to think about what you want"

???? Anyway when Dr. Tinkle's (head of EDS clinic in Ohio) dictation came in the mail - he wrote a paragraph directed to PT's just like her - the one's that need teaching - big time. I loved it - copied and sent it to her so she could read I wasn't some nutcase but had real-life, real-time issues with dysautonomia to boot. I wrote her a letter too that I found what I wanted and it wasn't her. I would shift toward pool PT or whatever major body issue or 'itis' reared it's ugly head first type of PT ~ and gain specialized care from a professional PT elsewhere. Honestly the next place was only marginal - tried a third place that is the weirdest ever - the guy admits and tells us patients that his 5 year goal is to treat dogs and not people anymore......?? Wow... In California no one knew much about EDS or dysautonomia - but I had better luck with their people skills for sure... I'll just keep looking though - it's all part of the package with rather unheard of disorders - you win some - lose some - but never give up, never.

That was the only truly disappointing appointment at Mayo AZ... I never mentioned it to anybody - but as long as she's in the PT department I won't be going there ~ unless of course there is a specific rehab program that she is fully not a part of. My best guess is that she's an amazing person overall but has a bad case of burnout.......If she found something else - or a new environment - or a new focus - her discontent might diminish ... I hope that's true anyway.

[cordellia]

many, many thanks to all. this has been an interesting journey. one that i hope yields answers and points me in a better direction. final meeting with neuro tomorrow. wishing the best for each of us... ~c