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Mayo Postscript


cordellia
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and so it goes...

NORMAL: finally spoke with the neuro (my primary at the mayo) she explained that for the most part my current test results were normal.there were a few minor outliers but essentially: normal. the mayo visit was fraught a number of health crises. wound up in their ER: pleurisy; serious trouble with my veins; an unexpected reaction to isuprel post my tilt...the last thing that we expected to hear was that the results were "normal". stress generally exacerbates my symptoms ina large scale fashion... after learning that the results were normal--we expected the doctor to be dismissive and reproachful. she was nothing of the sort... she began to discuss ways to improve and stabilize my overall health...

PAST HISTORY:, my husband and i both believe that my thorough history and past medical records helped to portray that reality of my day to day existence- and the severity of my symptoms thankfully we were able to provide results from earlier TTTs (most showed OI and major hypotension) these were done in the EU last summer; along with BP/symptom journals--these included photos of BP monitor results... (we started to photo the uber high and low pressures--when a doctor accused us of incorrectly logging them) my sense is that the new neuro weighted these materials heavily against the present (normal) results...

EXERCISE: the doctor recommended, again, the 3 week pain program and reiterated that fact that it would help to recondition and strengthen my body. she was optimistic and sympathetic. she talked about the waxing and waning nature of ANS issues. she seemed concentrated on my de-conditioned state. she also recommended an at home exercise program that consists of stretching, leg lifts, balance ball, recumbent bike... all geared to increasing lower body strength and increasing venous return.

MEDS: she suggested that we might trial meds during the summer months since heat intolerance is a major factor for me.

HEART: the echo results troubled me--especially on light of my past diastolic dysfunction and LVH-- there was a mild dilatation-mid level-in the ascending aorta--following up with my cardio.

oddly enough - for the past several days--feel as if i am in some sort of a remission. do not know what else to term it...this is the best that i have felt in nine years. still experiencing a weird strangling sensation in my neck and a lack of sensation on my left side... but the most challenging of my symptoms have abated somewhat. there is nothing new in my arsenal except prilosec...

am not sure what to think about the mayo visit... but i am very glad to know that the DD and LVH are indeed regressed. the dilatation issue that we discovered- will be explored. feel as if the neuro is on board. she ended our conversation by saying: we are here when you need us...

so the dysautonomia diagnosis (unspecified origin) stands. i am going to stop looking for the why...at least for now...am going to work at gratefulness--and revel in the fact that i am feeling better.

thank you, so much, for your support and kind encouragement during our mayo stay.

good night,

~c

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Glad to hear that overall it sounds as though it was helpful for you to go to Mayo. Disappointing to get another set of "normal" results, especially with all the health problems you had while you were there. Am very glad the doctor was supportive and not dismissive as so many of them are.

Enjoy your time of feeling well! That's marvelous. Hope it lasts a LONG time. :)

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That aortic dilatation is found in EDS...were you worked up for that while you were at Mayo? That along with the fact that you mentioned pain bad enough that your doctor thought you needed a pain program.

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I'm glad to hear that your doc was supportive in light of the essentially normal test results. How frustrating it must be to have gotten those! Enjoy this period of feeling your best in nine years! Best wishes with your continued treatment!

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I'm also very heat intolerant, and live in Tucson - that's some good thinkin'! Like Sue1234 I'm interested in what meds they're going to have you try. I'm glad that your Mayo visit seems to have worked out well for you. :)

Thanks!

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Welcome back home, Cordelia!

I wondered about a connective tissue issue as well....with the aortic dialation and the "vein issue" you describe. Most likely your cardio will just follow the dialation with 6 month or annual echos. It obviously is minor if they are not recommending anything at this point.

All of the normal results sounds great to me. ANS stuff does wax and wane. Enjoy the sunshine while it lasts :D

Hugs-

Julie

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I'm going to chime in asking for more info about the Dr's heat intolerance suggestions. You can tell we've all got the start of summer on our minds!

Glad you are feeling good & hoping it continues!

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