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Multiple Sclerosis (MS) - please introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Oct 20, 2016

Let's talk about living with multiple sclerosis.
As Community Director of Connect and moderator of the Brain & Nervous System group, I noticed that several people were talking about MS, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

srountree3006 | @srountree3006 | Jun 12, 2019
In reply to @vivib "I have problem with thorough doctors..wait maybe because I didnt find a thorough one yet. Took..." + (show)
@vivib

I have problem with thorough doctors..wait maybe because I didnt find a thorough one yet. Took my doc 21/2 yr to finally agree to get me mri. My endo is same..3 wks to send me prescript for ultrasound. Finally going tomorrow..let's see.

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Good luck!!

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babette | @babette | Jun 12, 2019

@vivib Do you live close to a big city and/or University Medical Center? I've had my best care at these hospitals.

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Becky, Volunteer Mentor | @becsbuddy | Jun 12, 2019
In reply to @bumble81 "There is a condition that is almost identical to MS but I don't think it causes..." + (show)
@bumble81

There is a condition that is almost identical to MS but I don't think it causes any lesions. It's called Chronic inflammatory demyelinating polyneuropathy. I'm not saying you have that but it might be something to consider.

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@legalese1972. I have a condition similar to MS, but it’s not. The MRI shows lesions just like MS (which I’m too old for). It’s called CLIPPERS—Chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids. Needed a good neurologist to figure it out! Too many diseases!

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 12, 2019
In reply to @vivib "I have problem with thorough doctors..wait maybe because I didnt find a thorough one yet. Took..." + (show)
@vivib

I have problem with thorough doctors..wait maybe because I didnt find a thorough one yet. Took my doc 21/2 yr to finally agree to get me mri. My endo is same..3 wks to send me prescript for ultrasound. Finally going tomorrow..let's see.

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@vivib no one should have to wait that long! It’s not as though the doctor is paying for the MRI! When you see the doctors, just tell them that you’ll sit there until they give you the prescription! Talked to a friend tonight who did just that. Good luck—were all cheering for you!

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Moderator
Lisa Lucier, Moderator | @lisalucier | Jun 14, 2019

Today's member spotlight features @becsbuddy, who many of you have met through this discussion and other Connect groups. Read her interview with fellow member John to learn more about her, including her love of the outdoors and quilting.

Great opportunities are heavy burdens: meet @becsbuddy https://connect.mayoclinic.org/page/about-connect/newsfeed-post/great-opportunities-are-heavy-burdens-meet-becsbuddy/. Please take a look and make a comment.

Member Spotlights are published the 2nd and 4th Friday every month. Check out all the Member Spotlights here https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

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grammadoro | @grammadoro | Jun 14, 2019
In reply to @brightwings "@bumble81 Hello, I am Bright Wings. I Accepted my diagnosis of MS in 1985. Note the..." + (show)
@brightwings

@bumble81
Hello, I am Bright Wings. I Accepted my diagnosis of MS in 1985. Note the word accepted...I was 35 before accepting what I had been told by many doctors before this last appointment.
I live very successfully with my MS. This is a dis-ease that does not go away. ACCEPTANCE of that is so important to the rest of your life.
So how do I live successfully with my MS? I RESPECT the fact I have it and I am going to have some good days and some more challenging days. That's the way it is.
I am PROACTIVE in protecting myself from being too hot or getting too cold, cuz it will come to mess me up for sure and steal my life as I know it and want it.
I GUARD my energy. Each of us has different ways the MS affects us. None of us will share the same story of our progression of symptoms. I often can not regenerate my energy after being too hot or cold or after stressful situations. It sucks when I run out of energy, cuz I know I don't get to play anymore for a while. Grin....
ATTITUDE is everything. I actively sought ways to learn to relax and let worries go...cuz worry sucks energy!!! Find the things that make you happy. Do them!!!!! When I am feeling sorry for myself, I am sucking my energy right out of me. Then my dis-ease takes over. I know I am making living with MS sound easy, it can be or not....its how you choose to live your life. Learning all these things has not been easy. It took many years to put this all together.
SLEEP is imperative to living a successful life with MS. When I don't get enough rest, my symptoms will get worse. I can not get back my energy as fast as when I am rested. Guarenteed.....
I REFUSE to allow this dis-ease to rule my life. So I live along side my MS. It is my constant companion. When I am EVER-OBSERVANT for conditions that are not beneficial for my MS, I don't go there...why, cuz then the MS takes over and I lose days weeks, months or years to the dis-ease. It's my choice. I would rather live my life with me being in control rather than my
dis-ease.
Ok, so that is how to live successfully with MS in a nut shell. By following the words in capitals, I get to be in charge of my life rather than this dis-ease taking control.
I use CBD to lessen the symptoms when they are present which is everyday. The cheapest and best brand I have found is Lazarus Naturals. On my worse days I use 1/2 tsp 3 x daily. The kind I use is CBD in coconut oil, 1200 mg of CBD. If you contact the company and send in a doctors note, now they have increased the discount to 60% over buying it at a store.
I will use CBD until the day I die! It changed my life that much. All my aches and pains went away. I receive no compensation from the company.
I write dis-ease each time because when I am living along side my MS, so many days I forget I have it.
I hope you will print this out and read it everyday.
My best to you, and who ever comes after this and reads it.
Now having written all that, I must also share the polar vortex got me. I am headed into the worse relapse in many many years. So I am being proactive to get myself into a better home that will be easier for me to control the temperature in the house cuz after an el Nino winter comes an incredibly hot summer. I almost died of cold inside my newly rented house a few weeks ago. So I am taking ACTION to get myself into a different home that is more MS friendly.
@lisalucier thanks for bringing me in here. I need to be here now.
BRIGHT WINGS not flying so high right now

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Hi @brightwings
I love your attitude. I was also diagnosed in 84 and didn’t take any treatment until 2000 when my symptoms started showing up. I try to live positively and your words are an inspiration. I’m interested in trying CDB for my ms. I quit using any disease modifying drugs a year and a half ago. My husband uses the oil to rub on his fingers which are severely arthritic. My question to you is what company are you referring to? There are so many outlets for getting it these days (in Wisconsin) I don’t know where to go. Thanks.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Jun 17, 2019
In reply to @grammadoro "Hi @brightwings I love your attitude. I was also diagnosed in 84 and didn’t take any..." + (show)
@grammadoro

Hi @brightwings
I love your attitude. I was also diagnosed in 84 and didn’t take any treatment until 2000 when my symptoms started showing up. I try to live positively and your words are an inspiration. I’m interested in trying CDB for my ms. I quit using any disease modifying drugs a year and a half ago. My husband uses the oil to rub on his fingers which are severely arthritic. My question to you is what company are you referring to? There are so many outlets for getting it these days (in Wisconsin) I don’t know where to go. Thanks.

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Hi, @grammadoro - sounds like you've had a many-years-long path with MS. What symptoms are you experiencing from your disease?

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grammadoro | @grammadoro | Jun 17, 2019
In reply to @lisalucier "Hi, @grammadoro - sounds like you've had a many-years-long path with MS. What symptoms are you..." + (show)
@lisalucier

Hi, @grammadoro - sounds like you've had a many-years-long path with MS. What symptoms are you experiencing from your disease?

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I’m currently mostly wheelchair bound, but can transfer by myself. I use a transfer board to get onto a shower chair, although I used to be able to use my walker and just step over the edge of the tub, sit on the seat and drag my right leg over. I’ve had some bouts of illness, I’m very susceptible to pneumonia. It’s tough to get back into walking when you’v been sitting so much. I’m doing exercises and plan to start physical therapy again next week. My goal is to be able to walk with my walker again to gain some independence. My husband is also in a wheelchair, but he has been a paraplegic since 1978. He gets my travel chair in and out of the van using a hoist. He is currently my caregiver.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 18, 2019
In reply to @grammadoro "Hi @brightwings I love your attitude. I was also diagnosed in 84 and didn’t take any..." + (show)
@grammadoro

Hi @brightwings
I love your attitude. I was also diagnosed in 84 and didn’t take any treatment until 2000 when my symptoms started showing up. I try to live positively and your words are an inspiration. I’m interested in trying CDB for my ms. I quit using any disease modifying drugs a year and a half ago. My husband uses the oil to rub on his fingers which are severely arthritic. My question to you is what company are you referring to? There are so many outlets for getting it these days (in Wisconsin) I don’t know where to go. Thanks.

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@grammadoro I, too, use the CBD oil. I get it from Bluebird Botanicals. They do everything online. Just google them. I found them thru a nurse who had worked with MDs in a medical marijuana clinic. I’m afraid I can’t give you ideas of how much to use because everyone is so different. The company may have suggestions. Let me know if you’re successful! Becky

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Moderator
Lisa Lucier, Moderator | @lisalucier | Jul 2, 2019

Many of you have shared some of your story here with multiple sclerosis (MS). I wanted to check in and see how things are going, and thought your responses would be beneficial to all the members in this discussion.

@srountree3006 - did you get the MRI you were hoping for?

@legalese1972 - how are your symptoms? Are you still feeling as though you are just trying to survive?

@bumble81 - were you able to get back to your old neurologist's office to see if they will order the MRI's and investigate the increased protein in your spinal fluid?

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