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).

Welcome to the support group dedicated to 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 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.

bumble81 | @bumble81 | Jul 18, 2019

In reply to @jakedduck1 "@ bumble81 How is the Ataxia manifesting itself? Have they told you the cause? Jake" + (show)

The ataxia manifests as balance problems, clumsiness. I drop things a lot . No clear cause but the doctor said that signals from my brain to my legs is interrupted causing my balance problems.

kennywood | @kennywood | Aug 28, 2019

Hello, I don't yet have a diagnosis, but I am 50 with a lifetime of symptoms that seem to be getting progressively more prevalent. Mayo just called my number today. They are looking at me from a headache/migraine perspective per my neurologist's PA's referral. One reason being that I have a pacemaker in my spine, which prohibits an MRI of that area (where I have been told things are a "hot mess.") He said the diagnosis doesn't matter, that he would just treat symptoms as they arose, anyway. Will Mayo take my health history and web it together, or will they laser focus on just this one symptom? Anyone? TIA

Lisa Lucier, Moderator | @lisalucier | Aug 29, 2019

In reply to @kennywood "Hello, I don't yet have a diagnosis, but I am 50 with a lifetime of symptoms..." + (show)

Hi, @kennywood - welcome to Mayo Clinic Connect. Glad you are getting closer to potentially getting some answers for the lifetime of symptoms you've experienced.

What I'd suggest, since we are not medical professionals here on Connect, is to ask whomever is in contact with you about a Mayo Clinic appointment about what the process will be with your health history.

As you posted here in a multiple sclerosis discussion, wondering if you and your doctor are thinking this might be a potential diagnosis for you?

Teresa, Volunteer Mentor | @hopeful33250 | Aug 29, 2019

Hello @kennywood,

Congratulations on getting a call back from Mayo. It will be a good thing to be seen by a multi-disciplinary medical center like Mayo. From others who have reported appointments at Mayo, my impression is that each department consults with others so that you get the benefit of many different medical teams. As Lisa, @lisalucier, asked I'm assuming that you posted in the MS discussion group since your doctor has mentioned the possibility of an MS diagnosis. Is that the case?

Neurological disorders can be very difficult to diagnose because so many of the symptoms overlap. Over 20 years ago, I began with neurological symptoms (foot-dragging, balance problems, general weakness on the right-side extremities). The first neurologist I saw suggested it was early stages MS and the second said it was probably early stages Parkinson's and a third doctor said that they might not know for sure until the symptoms got worse. I finally did get a diagnosis around 15 years after the symptoms began to get worse and resulted in falls.

I know how confusing it is to wait for a diagnosis when the symptoms are so bothersome, but I'm looking forward to hearing from you again after your visit to Mayo.

If you are comfortable doing so, would you like to share your current symptoms? I'm thinking of things like balance problems, gait difficulties, freezing in place when you walk, vision problems, etc.

grammadoro | @grammadoro | Oct 19, 2019

In reply to @becsbuddy "@grammadoro I, too, use the CBD oil. I get it from Bluebird Botanicals. They do everything..." + (show)

Thanks for your feedback. Sorry I haven’t been on the site for so long, I’ve been so focused on my pt and other family issues, thankfully my nieces and nephews, not my own children, who seem to be doing well. I still haven’t started the cdb yet, but I’v been in touch with Lazarus naturals, and they have been very helpful. I also qualify for a 60% discount, which brings the price down a lot. I’ll probably be taking 50 units n capsule form, starting with once a day and seeing how that does. I’ll try to check more frequently in the future. I forgot I had this page saved on my web browser, so it will be much easier to get here 😀

asquires | @asquires | Nov 13, 2019

I’m Annie. Trying to get a real diagnosis and prognosis and, hopefully treatment. I’m bedridden currently and am borrowing a wheelchair until I get my own. I can’t propel my wheelchair. So I’m pretty much home bound now.
I suffer from muscle atrophy and joint squeezing. I also have had 4 surgeries on my spine. I have brain damage and I am without family support and I have no advocate.
I’m a very positive person.
I know my brain can create new pathways, and I suddenly have lots of patience. I graduated pharmacy school in 2005 but was never able to earn with my degree.

asquires | @asquires | Nov 13, 2019

In reply to @mlk1956 "Hi, my name is Michelle" + (show)

Hi Michelle. I’m new here

asquires | @asquires | Nov 13, 2019

In reply to @hopeful33250 "Hello @kennywood, Congratulations on getting a call back from Mayo. It will be a good thing..." + (show)

I, also waited 15 yrs for a diagnosis. I was under the care of a D.O. While all my symptoms became serious. She told me there was nothing wrong with me. All the falls and injuries from shocks leading to temporary paralysis.
She refused to refer me to a neurologist.
It turned out I had to have two more surgeries and now am looking at shoulder surgery and possibly hip. I’m now bedridden hoping for N appointment

tdonoho | @tdonoho | Nov 13, 2019

In reply to @asquires "Hi Michelle. I’m new here" + (show)

Hi Michelle. I'm Todd. New also. How are you?

Lisa Lucier, Moderator | @lisalucier | Nov 16, 2019

In reply to @tdonoho "Hi Michelle. I'm Todd. New also. How are you?" + (show)

Hi, @tdonoho - I'd like to add my welcome to Mayo Clinic Connect. Do you have a diagnosis of multiple sclerosis? If so, what types of symptoms are you experiencing or did you experience previously?

@asquires - congratulations on the pharmacy degree. That is a big accomplishment. Really hard to not be able to use it.

Without an advocate or family support, do you have social services or any other organization assisting you?