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Posts (7)

Jul 15, 2018 · Parking changes at st marys hosp? in Visiting Mayo Clinic

Saint Marys Campus volunteers received the following info last week. The patient entrance to the Generose parking ramp is from Peace Garden Drive.
From July 15 to July 22, changes will affect staff, patient and visitor parking, as well as traffic flow on the Mayo Clinic Hospital — Rochester, Saint Marys Campus. These temporary changes are necessary due to the construction of a new skyway over Peace Garden Drive. A crane must be positioned on the roadway, creating a bottleneck in that area.

Because of this inconvenience during that week, alternative access to the Generose Ramp will be made available to minimize the effects on patients and visitors, as well as reduce traffic on Peace Garden Drive. Flaggers will direct access through brief lane closures.

May 2, 2018 · Scleroderma and FSGS Kidney Disease in Kidney & Bladder

Greetings @rconnell22. Here are a few thoughts related to your "my symptoms haven't always lined up text book wise" and "any other cases like mine" comments just in case they're helpful to your situation. They are based on my wife's experience with Scleroderma (diagnosed in late 1987 by a GI doc at Creighton University Hospital in Omaha).

1. My wife has been a member of two different support groups over the years and actively tracks this disease on social media
– Common theme: She's never encountered two people afflicted by this disease with the exact same symptoms
3. Receives regular kidney-function checks… so far so good
3. It's a complicated disease for which there are no easy medical solutions… doubly difficult when it's being camouflaged by other physical ailments
4. Keeping pace with the Scleroderma intel, patience (with your docs) and persistence (with what you want) are hallmarks for success

Also, I highly recommend Dr. Griffing's video (see the link posted above by our moderator). His presentation, more than anything else I've seen/read these past 30 years, provided me with a clear picture of where my better half fits into the sometimes-difficult-to-see Scleroderma BIG picture. Wishing you all the best!

PS: If you peruse the comments tied to the above video, you'll see a post that includes readable copies of Dr. Griffing's visual aides (a bit difficult to see clearly in the video)

Nov 15, 2017 · Video Q&A about Scleroderma in Skin Health

Good info! Thanks Dr Griffing

Nov 15, 2017 · Video Q&A about Scleroderma in Skin Health

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Nov 15, 2017 · Video Q&A about Scleroderma in Skin Health

Do you know of any Mayo Clinic-sponsored Scleroderma-related research studies seeking 65+ year-old individuals with the following diagnoses?
• First diagnosed with Raynauds and Sjogrens in early 80s followed shortly thereafter with Scleroderma
• Primary Scleroderma issue is related to GI, not skin
• Symptoms: Disappearing/sporadic motility, SBS, minimal caloric intake by mouth, acid-caused nausea (relieved by temporarily by vomiting), small bowel bacterial overgrowth (relieved with antibiotics) and infrequent bowel movements
• Life-sustaining nourishment via TPN every night

Nov 15, 2017 · Video Q&A about Scleroderma in Skin Health

Are you Mayo Clinic’s subject matter expert (SME) on Scleroderma?
• If “no,” does Mayo Clinic – Rochester have an equivalent SME on staff?
• If “yes,” does the Department of Rheumatology at Mayo Clinic – Rochester regularly consult with you for its Scleroderma-afflicted patients?

Nov 15, 2017 · Video Q&A about Scleroderma in Skin Health

Is today’s presentation being recorded and if “yes,” will it be available to subscribers of Mayo Clinic Connect for later viewing?