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.

vivib | @vivib | Jun 10, 2019

Aww thank you so much!!! I really appreciate it. I spoke to my endocrinologist who was delaying sending me the prescriptions for the ultra sound and blood work..she said right away "oh did you get my papers I sent them last week" hmmm no o didnt..then she says oh yea I only sent them this past fri. Then she said oh it's only a lump. Yes it is..along with voice hoarseness..pain when swallowing and pain around my chest neck area..I am not just reading internet trying to diagnose myself but I know I am so off the way I feel. Plus not sure if you read it..but my whole right side was visibly inflamed. Now its constantly inflamed. My massage therapist said jeez..like two different arms and legs and back. (Vs right to left) sorry for long posts..just getting discouraged not thinking that I will find a solution last hope is mayo clinic ❤

vivib | @vivib | Jun 10, 2019

Anybody on this amazing group also have elevated igg subclass 1. And elevated protein in spinal tap..and extremely inflamed only on one side? And right leg is very heavy? Is it possible that even tho ugh I dont have lesions i still have Ms whitch was my original diagnosis. PPMS. then because of no lesions she said i dont jave it..then another neuro said if i have ms then he is retiring. (I found that obnoxious) just trying to make sense of all this. I am only getting worse and no treatments because no diagnosis. Still kicking butt in the gym..and hiking ..no one stops this girl!. Even hiked up 831 steps (yes I was in extreme discomfort after that but when someone says I cant do something I prove them wrong!) My husband keeps saying..probably out of frustration..that one days jes gonna have to push me around in a wheel chair or hes gonna lose me too early..um dont count me out so soon Mr. (He is really just frustrated but doesnt know how to deal with me not feeling well)

bumble81 | @bumble81 | Jun 10, 2019

In reply to @lisalucier "HI, @bumble81 - is everything still on hold with your neurologist till you get the other..." + (show)

My neurologist office up and closed on me while I was waiting for them to provide the radiologist office with prior authorization numbers for my MRI's they ordered. That was a set back.

So now I am going back to my old neurologist office to see if they will order the MRI's and investigate the increased protein in my spinal fluid. In the mean time my internal tremor has gotten worse. It used to be a strong inner vibration but now it is slightly visible.

Fortunately I was able to an appointment just a few weeks out rather than a few months.

Nikki R. | @legalese1972 | Jun 12, 2019

Has anyone here had symptoms for years but no lesions? Last year I lost the use of my legs but went thru rehab and I am walking again. I still have many issues, extreme fatigue, dizziness, blurred vision, stability, headaches that I never used to get before, pins and needles, numbness, and spasms and urinary incontinence to name a few and I'm 46. All of my MRIs keep coming back normal. I know this is not in my head. My mother had MS and so I'm extremely familiar with the symptoms and everything I've been experiencing the last 2 years is deja vu of my mother's condition. Before 2 years ago, I was extremely active, running, social, and had a life. Now my life is just trying to survive through the day at work to pay bills. How long did you have symptoms before lesions appeared? Doctors have given me a diagnosis of Central Sensitization and Fibromyalgia which I'm not convinced of as all of my symptoms point to MS but lack the lesions. *sigh*

Lisa Lucier, Moderator | @lisalucier | Jun 12, 2019

In reply to @legalese1972 "Has anyone here had symptoms for years but no lesions? Last year I lost the use..." + (show)

Hi, @legalese1972 - Hoping some of the other members here will have some thoughts for you on experiencing symptoms for years you recognize from your mother's MS but no lesions and normal MRIs. @bumble81 and @srountree3006 may have some insights from being in the process of getting a diagnosis, and @vivib mentioned having a diagnosis of MS without any lesions. @babette and @brightwings may also have some input for you.

One other thought is you might post in this Connect discussion on fibromyalgia to see if any of the members there have any thoughts on your fibromyalgia diagnosis you mentioned you are not convinced of https://connect.mayoclinic.org/discussion/fibromyalgia-5/.

Have you considered or already pursued an opinion from another neurologist specializing in MS, @legalese1972?

bumble81 | @bumble81 | Jun 12, 2019

In reply to @legalese1972 "Has anyone here had symptoms for years but no lesions? Last year I lost the use..." + (show)

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.

srountree3006 | @srountree3006 | 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)

Thank you for this! The only did an MRI on my brain two years ago but I didn't have lesions then

babette | @babette | Jun 12, 2019

You can also have lesions on your spine. I think a more thorough doc would have done a full MRI!

srountree3006 | @srountree3006 | Jun 12, 2019

In reply to @babette "You can also have lesions on your spine. I think a more thorough doc would have..." + (show)

That's what I'm pushing for now. I used to work for neurosurgery and just had my endo send over a referral to them. They can at least order the MRIs

vivib | @vivib | Jun 12, 2019

In reply to @babette "You can also have lesions on your spine. I think a more thorough doc would have..." + (show)

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.