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How to Search on Connect - It can help you!

Just Want to Talk | Last Active: Feb 4 5:29pm | Replies (75)

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@loribmt

Hi @helenlodahl, welcome to Mayo Clinic Connect. We’re a community of members just like you who share their experiences to help others. There is an MS discussion group which might be informative for you, where you can connect with other members who have the disease.

https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/

First I have to say how sorry I am that you have MS and that it’s progressing. I know you’re not looking for sympathy but I am offering my sincerest empathy. My sister has had Secondary Progressive MS for 34 years. It’s a frustrating and unkind disease with quiet lulls and then some flairs.

Are you taking any medications to help with spasticity? You mentioned no longer being able to hold yoga poses. Can you still do some simple stretching exercises to keep your joints and muscles moving?
I found this site with stretches you might find helpful. https://mssociety.ca/en/pdf/EverybodyStretch.pdf

Seeking treatment at Mayo Clinic is a wise decision. I’ve been an ongoing patient with Mayo-Rochester for the past 2 years and have the highest regard for the Clinic as well as the doctors and staff. I’ve had personal experience with the neurological department and found the doctors to be relentless in their pursuit of the cause of symptoms, treatments and recommendations. Your concern is that you’ll not be taken seriously. From my experience, I’ve never found that to be the case. When meeting with Mayo staff, I’ve never felt rushed nor trivialized but always met with respect and attentiveness. I would expect the same for you.

Two more sites are posted below which shed some light on MS and the different types.

I hope you hear back soon and are able to meet with an MS specialist at Mayo. Wishing you all the best, Lori.

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/multimedia/multiple-sclerosis-diagnosis/vid-20135054https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Secondary-progressive-MS

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Replies to "Hi @helenlodahl, welcome to Mayo Clinic Connect. We’re a community of members just like you who..."

@helenlodahl One more note I want to pass along to you is the guide to getting the most out of your initial appointment with the doctors at Mayo Clinic.
https://www.mayoclinic.org/patient-visitor-guide/preparing-for-your-visit/how-to-make-the-most-of-your-appointment

Which Mayo Campus did you chose to visit? Please let us know when you get an appointment. So many of our members are familiar with the 3 Clinics and would be more than happy give you tips for travel, lodging, food, etc. Mayo Clinic also has a fantastic Concierge service to help as well.

Good luck to you! Lori.