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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.

Lisa Lucier | @lisalucier | Apr 15, 2019
In reply to @rjader1266 "I was diagnosed with RRMS in 2015, but started with Gastroparesis in 2014. Apparently, that's backwards!..." + (show)
@rjader1266

I was diagnosed with RRMS in 2015, but started with Gastroparesis in 2014. Apparently, that's backwards! Since then, I've also been diagnosed with Trigeminal Neuralgia and Heart Failure. All but the heart failure is due to MS. All this at the young age of 49. My uncle and brother also have MS, but they have PPMS. They are in wheelchairs and I'm still mobile. Anyways, I've had Lemtrada, two rounds, hoping to slow the progression of MS. I tried Copaxone and Aubagio, but they did not help. I'm on a lot of other medications too. I'm a mom of 3 girls. One natural, special needs adult now, and we are raising 2 nieces, ages 8 and 10. I taught Special Education students for 21 years, but had to stop. So, I stay home and try to survive! I'm glad to have found another group for MS. I'm hoping to learn a lot here.

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Hello, @rjader1266 - you have a lot on your plate with the relapsing-remitting MS (RRMS), gastroparesis, trigeminal neuralgia and heart failure, not to mention being the mom of three girls.

In addition to discussion on MS, you might also be interested in these Connect discussions:

- on gastroparesis, a thread started in 2011 that continues up through present https://connect.mayoclinic.org/discussion/gastroparesis

- on heart failure and sodium https://connect.mayoclinic.org/discussion/salty-facts-heart-failure-and-sodium

- on trigeminal neuralgia https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc

How has the alemtuzumab (Lemtrada) gone for you?

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vivib | @vivib | Apr 16, 2019

Good afternoon I am new to the group. I have yet to be diagnosed..well I was at first but because of an emg the doctor said no. He original diagnosis was ppms I have weakness now from my waist to my legs..yet on a physical exam doc cant seem to pinpoint where it's coming from. I have elevated protein in my csf..high subclass 1 igg. Blood in my urine for 7 or so months with still no reason found..yet I have pain..thyroid antibodies were very high 245. T3 was 24. Dont know where to go with this gets so frustrating. Ready to come to you guys to check me all out. I tried p.t. ivig. Which I feel made it worse. I have one lesion a yr and a half ago..but docs feel i don't need another one. Even though my symptoms are getting worse.

I know it's a lot of info but any input would be appreciated.

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1 reply
babette | @babette | Apr 16, 2019
In reply to @vivib "Good afternoon I am new to the group. I have yet to be diagnosed..well I was..." + (show)
@vivib

Good afternoon I am new to the group. I have yet to be diagnosed..well I was at first but because of an emg the doctor said no. He original diagnosis was ppms I have weakness now from my waist to my legs..yet on a physical exam doc cant seem to pinpoint where it's coming from. I have elevated protein in my csf..high subclass 1 igg. Blood in my urine for 7 or so months with still no reason found..yet I have pain..thyroid antibodies were very high 245. T3 was 24. Dont know where to go with this gets so frustrating. Ready to come to you guys to check me all out. I tried p.t. ivig. Which I feel made it worse. I have one lesion a yr and a half ago..but docs feel i don't need another one. Even though my symptoms are getting worse.

I know it's a lot of info but any input would be appreciated.

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Welcome - Have you had a lumbar puncture (spinal tap)?

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Lisa Lucier | @lisalucier | Apr 18, 2019

Hi, @babette - how is your MS lately?

I also wanted to invite @cristin1 into this conversation. @cristin1, I noted you mentioned something about MS flares in another thread on Connect. Are you in the midst of a flare now?

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babette | @babette | Apr 19, 2019

Hi Lisa - Thanks for asking about my MS. The short answer is I don't now how it is lately! Late last summer I had a total right knee replacement and have had a very hard time recovering. For the first 6 months I assumed (probably correctly) that I was healing on schedule but with more pain in the actual knee than most people experience. As time goes on, though, I notice both legs sometimes feel like cement. Very very heavy, both knees painful the R due to nagging post-op pain and the L hurting because there is no more cartilage left. The L one will need to be done probably later this year. I just don't know if the weight in my legs is due to MS or something else. Time to call my neurologist I guess!

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 19, 2019
In reply to @babette "Hi Lisa - Thanks for asking about my MS. The short answer is I don't now..." + (show)
@babette

Hi Lisa - Thanks for asking about my MS. The short answer is I don't now how it is lately! Late last summer I had a total right knee replacement and have had a very hard time recovering. For the first 6 months I assumed (probably correctly) that I was healing on schedule but with more pain in the actual knee than most people experience. As time goes on, though, I notice both legs sometimes feel like cement. Very very heavy, both knees painful the R due to nagging post-op pain and the L hurting because there is no more cartilage left. The L one will need to be done probably later this year. I just don't know if the weight in my legs is due to MS or something else. Time to call my neurologist I guess!

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Hi @babette, I've had a heavy feeling in my legs off and on over the past 5 or so years but nothing like you have experienced. I was diagnosed with lymphedema a little over a year ago and have been wearing compression socks to help with the swelling. I found an article that speaks to heavy feeling in the legs that may provide some more information for you.

What causes heavy aching legs?
-- https://www.medicalnewstoday.com/articles/321670.php

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srountree3006 | @srountree3006 | Jun 5, 2019

I have documented symptoms, flares and progression over 4 years of multiple sclerosis and my doctor will not order MRIs before testing me for lupus (no symptoms) RA and breast cancer...this seems to me like a waste of time. I understand the need to rule out similar issues but these are not similar to my very specific symptoms. She maintains (without tests) that my nerve issues are a result of diabetes I was just diagnosed with and haven't had long enough nor am I old enough to have developed such damage.

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2 replies
Lisa Lucier | @lisalucier | Jun 5, 2019
In reply to @srountree3006 "I have documented symptoms, flares and progression over 4 years of multiple sclerosis and my doctor..." + (show)
@srountree3006

I have documented symptoms, flares and progression over 4 years of multiple sclerosis and my doctor will not order MRIs before testing me for lupus (no symptoms) RA and breast cancer...this seems to me like a waste of time. I understand the need to rule out similar issues but these are not similar to my very specific symptoms. She maintains (without tests) that my nerve issues are a result of diabetes I was just diagnosed with and haven't had long enough nor am I old enough to have developed such damage.

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Hi, @srountree3006 - welcome to Connect. You will note that I moved your post to this existing discussion on MS, where you will meet others familiar with this existing diagnosis of yours.

You mentioned your doctor will not order MRIs before testing you for lupus, rheumatoid arthritis and breast cancer.

Is the MRI you were hoping would go forward to confirm your MS diagnosis, or look at the status of your MS?

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1 reply
srountree3006 | @srountree3006 | Jun 5, 2019
In reply to @lisalucier "Hi, @srountree3006 - welcome to Connect. You will note that I moved your post to this..." + (show)
@lisalucier

Hi, @srountree3006 - welcome to Connect. You will note that I moved your post to this existing discussion on MS, where you will meet others familiar with this existing diagnosis of yours.

You mentioned your doctor will not order MRIs before testing you for lupus, rheumatoid arthritis and breast cancer.

Is the MRI you were hoping would go forward to confirm your MS diagnosis, or look at the status of your MS?

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Unfortunately I am still undiagnosed. I am hoping MRI will confirm diagnosis before my heart issues require pacemaker which will make MRI impossible.

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babette | @babette | Jun 5, 2019

@srountree3006 - Why can't your doc just order the MRI already? If it's a priority for YOU to know what's up, it should be her priority too. Maybe get a second opinion?

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