How to Search on Connect - It can help you!

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

@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!!!

@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.

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.

Thank you Nancy, that made my anxiety with changing doctors much better.

@helenlodahl Helen, oh gosh, it’s understandable to feel so scared and helpless when your once dependable body is letting you down. Everything comes to a screeching halt and trying wrap your head around this enormous change is overwhelming! We go through a grieving process for what we’ve lost as our lives change. It’s how we deal with the loss that can make or break us in the end.

I’m having to go through the same thing with making adjustments for what I can no longer do. However, we can adapt to our situations. My sister with MS bought a Hover-round motorized chair to use in and out of her house. I didn’t mention in my last posting that my sister passed away last summer. But NOT from any complications with MS. She was 84 and had lived a long, adventurous life.
She was incredibly artistic, athletic and active. And also one of the most vain people I’ve ever known! When she developed MS at 50, she vowed never to use a cane, walker or wheel chair. Well, at 78, when she eventually got to the point where MS took her mobility, and ability to stand, she finally caved and got the scooter. It actually gave her wings!! She felt rejuvenated to finally get back outside on the deck, took ‘walks’ on the sidewalk around the neighborhood, was able to join her family again for dinners, shopping, etc.
She kept in shape on an elliptical bike with foot peddle straps to keep her feet in place. She received physical therapy to learn alternative ways to keep limber, did upper body strength training and kept active with her watercolor. She missed her passion of playing golf and horseback riding. But found other activities to fill the void.
This was my long-winded attempt to say that we have a remarkable ability to rise and tackle what is required of us. I’ve always practiced the motto of Accept, Adapt and Move on...it has helped to keep me focused anytime I’ve had a setback. I re-stage my thought process and push forward from there.
You are very strong to have gotten this far in your MS Journey. I firmly believe your healthy lifestyle and diet have kept you from having relapses before now. Try to keep positive and do the best you can to keep physically active and distracted. What are some hobbies you enjoy?

I like to quilt, yoga, exercise. I just need to refocus. Like you said, accept, adapt and move on. I can't live in the past, only the present.

@helenlodahl We have a lot in common with quilting and exercise. I also recently took up watercolor! Having a blast with actually sketching and painting recognizable objects! ☺️ It’s important for us to have outlets which bring us joy and perspective.

I sincerely hope I didn’t sound flippant with my comment of accepting and moving on. It’s been part of my psyche for at least 20 years. It isn’t easy to do in the beginning. But with practice we can train ourselves to live in the moment. It has helped me cope with the drastic changes in my life over the past 2 years. I really do believe you have this power in you as well.

Not flippant at all, unfortunately it is reality. I'm going to start chair yoga to see if it helps my mental state. I need to take cues from my pooches, live in the moment. 🙂 Thank you for reaching out.

You are most welcome @helenlodahl. Some of your symptoms of MS is what I deal with having Chiari Malformation and Syringomyelia. Everyday we wake up and make the decision to remain positive and push thru whatever is thrown at us that day. At times it is hard to remain positive. When that happens, I allow myself ten minutes to cry and feel sorry for myself. I then say to myself…..”Nancy, pick yourself up and start fighting. Chiari and Syringomyelia watch out as you have messed with the wrong girl!”

I have received compliments from doctors and others that I am always so positive. (My parents taught me growing up that I should always be thankful as there are people that have it worse than me. This lesson has served me well dealing with my Chiari and Syringomyelia.) I then tell them “you don’t see me at those times when I am not”. I never fight to keep those times from happening as it needs to happen for me to be able to move forward in my daily journey navigating my life living with Chiari and Syringomyelia.

My Mayo doctors are so supportive. I feel I don’t need to worry about my future as they have my back and are walking along with me on my journey. I feel them there each and everyday. Which I can’t figure out how they do it when I live five hours away and see them once a year. They are truly a gift from GOD and I find great comfort in that.

So in closing @helenlodahl keep fighting each and everyday! Whether it is looking for the right doctors, medical care or just trying to get thru the day. Take time for yourself. Whether it be pampering yourself or grieving for what you have lost. Don’t be afraid to ask for help when you need it. Sending you prayers, hugs and positive thoughts as you continue to navigate your journey living with MS.