Multiple Sclerosis (MS) - please introduce yourself

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?

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 ❤

Liked by Lisa Lucier

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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)

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@lisalucier

HI, @bumble81 – is everything still on hold with your neurologist till you get the other MRIs?

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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.

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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*

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@legalese1972

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*

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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?

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@legalese1972

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*

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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.

Liked by Lisa Lucier

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

Liked by Lisa Lucier

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

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@babette

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

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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

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@babette

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

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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

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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@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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@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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@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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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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