How to Search on Connect - It can help you!

Posted by John, Volunteer Mentor @johnbishop, Dec 14, 2018

Do you know about Connect’s Search function? I find it really helpful when I want to find a discussion about a symptom that I have and want to connect with other members with similar health problems.

Have you tried it? If not, I would recommend giving it a test run. It’s easy, just click the small magnifying glass icon at the top of the window next to the little notifications bell.

Has it helped you? Let others know!

John

Thank you John! As a new member I appreciate the guidance.

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@kleelibby

Thank you John! As a new member I appreciate the guidance.

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Hi @kleelibby, Welcome to Connect! I'm glad you found the discussion helpful. Connect is a great place to meet other members who share similar symptoms and conditions and learn what has helped them.

Are you looking for any specific information or health condition discussion?

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Thanks for the welcome. I’ve found the groups I’m interested in, but had to change my email settings as I was getting bombarded with posts!

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I am not able to start discussion. I click on the icon, on top of the window, don't get any response.

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@sussan

I am not able to start discussion. I click on the icon, on top of the window, don't get any response.

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Hi @sussan, Welcome to Mayo Clinic Connect. Are you clicking on the START A DISCUSSION button at the top of a Group page?

If you want to start a new discussion in this Just Want to Talk group, go to the top of the window and click Just Want to Talk discussion link to take you to the groups home page where all of the discussions contained in the group are listed. Then click the Start a Discussion button and see if it works for you. The screens should show like below.

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what can I do to stop downward progression of pulmonary fibrous?

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@bdsmith

what can I do to stop downward progression of pulmonary fibrous?

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Hi @bdsmith, welcome to Mayo Clinic Connect. You will find members talking about pulmonary fibrosis in the Lung Health group here: https://connect.mayoclinic.org/group/lung-conditions/

You may wish to join this discussion:
– Living with Pulmonary Fibrosis (sometimes): Finding strength https://connect.mayoclinic.org/discussion/pulmonary-fibrosis-some-times/

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I was diagnosed with RRMS twenty-four years ago. Six years. ago, I progressed to SPMS and had to go on disability from work. For the last nine months my legs have been getting progressively worse. An MRI in October, 2020 showed new lesions on my spine relating to my leg problems. I've gone from being able to walk every day to struggling to walk every day, doing yoga three times a week to not at all because of legs weakness. I just contacted the Mayo Clinic hoping for an appointment with the MS doctor(s). I'm not sure what to hope for by seeing the MS doctor(s), but I'm hoping they can help me. Does anyone have any experience seeing the MS doctors at the Mayo Clinic? I see a Neurologist in my hometown. I need to see a doctor that wants to help me and not just chalk it up to "another flare" or residual from a past flare that could last up to a year. Any help you can offer would be greatly appreciated.

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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-20135054
https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Secondary-progressive-MS

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@helenlodahl

I was diagnosed with RRMS twenty-four years ago. Six years. ago, I progressed to SPMS and had to go on disability from work. For the last nine months my legs have been getting progressively worse. An MRI in October, 2020 showed new lesions on my spine relating to my leg problems. I've gone from being able to walk every day to struggling to walk every day, doing yoga three times a week to not at all because of legs weakness. I just contacted the Mayo Clinic hoping for an appointment with the MS doctor(s). I'm not sure what to hope for by seeing the MS doctor(s), but I'm hoping they can help me. Does anyone have any experience seeing the MS doctors at the Mayo Clinic? I see a Neurologist in my hometown. I need to see a doctor that wants to help me and not just chalk it up to "another flare" or residual from a past flare that could last up to a year. Any help you can offer would be greatly appreciated.

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@helenlodahl I have been a Mayo patient (Rochester MN) for almost six years. My personal experience is with the neurology dept. Not with MS, but I am in agreement with @loribmt. That is exactly what I have experienced with the neurology dept. I actually look forward to my annual appointments with my entire Mayo (neurology, neurosurgery, orthopedics) team. I consider all those individuals part of my family. I am excited as only three more weeks and I will be seeing them!!!

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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-20135054
https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Secondary-progressive-MS

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@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.

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@loribmt

@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.

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Thank you for the information Lori. I live in the Pacific Northwest, so I chose the Arizona location. I'm looking forward to getting an appointment. I am truly terrified about losing the use of my legs. I don't want to go to a doctor who is going to say "here, take this pill." I have tried many medications, and I've had reactions to all of them. I am very sensitive to medications, therefore, I am not currently taking any meds. I have lead a very healthy lifestyle since being diagnosed in 1996. I think that has helped me, but now I can't live that same lifestyle. I'm frustrated and scared. I just don't know where to go from here. I'm hoping Mayo Clinic can help me.

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