Multiple Sclerosis (MS) - please introduce yourself

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

Let's talk about living with multiple sclerosis (MS).

The Mayo Clinic Connect moderation team have noticed people have been talking about MS, but those discussions have been scattered throughout the community. So, the team decided to start this support group just for multiple sclerosis to bring all those with this diagnosis or whose loved one has MS — or wondering if they or a loved one has MS — together. This also provides a great opportunity for those who have questions for those who share this diagnosis.

This MS support group is intended to be a welcoming, safe place for people to connect and share experiences; ask questions about doctor visits, symptom relief, the diagnostic process and available treatments; and encourage and check in on others in similar situations.

To be part of the MS group, you can:

Follow the group. Following this group will allow you to receive regular updates in your Connect Daily Digest about group activity.
Browse the discussion topics. From the group's home page, look through the discussion titles and see where you may have tips or ideas to contribute or a question to ask others.
Use the group search to find discussions that interest you. If you want to find a specific, MS-related topic, this is the quickest way to see what's available in the group discussions.
Introduce yourself. Giving a brief background on yourself, when and how you were diagnosed, and what treatments you've had so far will help others in the group get to know you and determine what they might ask you about your MS experiences.

Regardless of where you may be on your journey with MS today, you’re invited to join this group and connect with others.

Why not start by introducing yourself? What has your MS experience or the experience of your loved one been like? What symptoms and treatments have you or your loved one had, and have they helped? Do you have any questions you'd like to ask others who have MS or who've walked alongside someone with the disease?

Grab a cup of tea, iced coffee, or beverage of you choice, and let's chat.

Interested in more discussions like this? Go to the Multiple Sclerosis (MS) Support Group.

asquires | @asquires | Dec 29, 2019

I finally have an appointment with an MS specialist. My physician Isn’t comfortable treating me. I’m back in bed unable to do my ADL’S. I have lots of pain. I think nerve entrapment plus I injured it several times from falling.
I found MS stretches and Pilates on you tube. I’m hanging in there. Bored beyond belief. I have a great dog, though, and she keeps my spirits up.

Ethan McConkey, Moderator | @ethanmcconkey | Dec 29, 2019

Hi @asquires that's great you have been able to get an appointment with an MS specialist! You may have noticed I moved your post to this existing discussion on Multiple Sclerosis that you have posted in before so that you can connect with others with similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

@brightwings @grammadoro @babette @johnbishop @legalese1972 @vivib and @bumble81 may be able to offer you support and share suggestions for your initial specialist appointment.

Back to you @asquires do you have any questions going into the appointment that you'd like to get answered?

John, Volunteer Mentor | @johnbishop | Dec 29, 2019

Hello @asquires -- There are some good tips on seeing a new specialist or doctor by @roch here:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Lisa Lucier, Moderator | @lisalucier | Dec 31, 2019

In reply to @asquires "I finally have an appointment with an MS specialist. My physician Isn’t comfortable treating me. I’m..." + (show)

Hello, @asquires - that is tough to be back in bed due to pain. Good to hear you have an appointment scheduled with a specialist in MS, though.

Is your appointment coming up soon? Besides the stretches and spending time with your dog, are things like reading books, watching TV or visits from family or friends good options to help you pass the time?

Rachel, Volunteer Mentor | @rwinney | Jan 12, 2020

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

Jump to this post

I do not have MS but am interested in learning about it because it seems to parallel some of my symptoms. I'm so impressed with your post and really appreciated reading it. May your wings be bright again soon.
Rachel

asquires | @asquires | Jan 12, 2020

In reply to @ethanmcconkey "Hi @asquires that's great you have been able to get an appointment with an MS specialist!..." + (show)

My MD wants me to not have prednisone before I see him. I don’t understand.
I also have injuries (neck,shoulder low back) How do I bring that up?
I made a list of all my symptoms.
Should I make a list of other things?
How long do these appointments “last?

How do I find out if he’s the one for me.?

sadnancy | @sadnancy | Jan 18, 2020

Before I go to a new specialist, I look up on YouTube what the exam/first visit will be like. Look for "neurological exam" or "exam for head trauma" etc. It relieves anxiety. I find out what questions the doc will ask so I can organize my thoughts and have accurate answers ready. I can compare the doctor with the YouTube doc. I know every doctor does exams differently but seeing a medical professor do a comprehensive exam on your computer screen can provide you with good information. Two thoughts about the prednisone: 1. Taking it before seeing the doc will eliminate some of your symptoms. The doc may not be able to assess your pain level accurately if you are on prednisone because it relieves pain. 2. It's possible that he wants to see how you react to prednisone - whether or not it decreased your symptoms. That can help him come to a more accurate diagnosis. Definitely write down all your issues, past injuries and illnesses and all the questions you want him to answer. I print out 2 copies - one for me and one for the doctor.

sadnancy | @sadnancy | Jan 18, 2020

I have not been diagnosed with MS. However, one of my symptoms of PD seems to be similar to the ms hug: Diaphragmatic dystonia. Austedo is helping reduce the symptoms. I'm a 73 year old retired nurse. The first PD symptom happened in the 1990s - REM Sleep Behavior Disorder. I had thrown myself out of bed and across the room. The dream I was having involved a crowd of people chasing me as I dove into an elevator. I was diagnosed with sleep apnea. Only used the machine a few times. Next came handwriting changes. In 2006 I found out I lost my ability to smell when there was a fire in the kitchen and I couldn't even smell the heavy dark smoke. Changes in dexterity: tying a bow, gift wrapping a package. When I noticed tremors the GP and sent me to a neurologist. He ordered a DAT scan and said I definitely have PD. Over the years I have seen 8 specialists and have had conflicting diagnoses. No one has ever mentioned MS - yet. I live alone. I have supportive family and friends. I have a part-time caregiver, . Since I no longer drive, I get my groceries from Walmart, having them delivered to my home. That is a wonderful service for shut-ins. I haven't researched MS yet; I figured if 8 specialists didn't bring it up, I probably don't have it. Anyone have experience with Austedo?