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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.

Nikki R. | @legalese1972 | Jul 6, 2019
In reply to @lisalucier "@bumble81 - thanks for the update on the testing you've been undergoing. Glad you are getting..." + (show)
@lisalucier

@bumble81 - thanks for the update on the testing you've been undergoing. Glad you are getting some answers, though it sounds as if you feel some symptoms you have had have not yet been accounted for in a diagnosis?

Your MRI, evoked potentials (I believe the same as described here https://newsnetwork.mayoclinic.org/discussion/contact-heat-evoked-potential-stimulation-cheps/), and a video nystagmography (VNG) are still to come, correct?

@legalese1972 - sounds like you've found nutrition can really make an impact on your symptoms. What does your doctor say about the fatigue that you've been experiencing?

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My PCP recommended I see my neurologist in regards to my fatigue. They tried the CPAP and it made it worse where I was falling asleep during the day. My appointment with my neurologist is at the end of August.

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caregiver49 | @caregiver49 | Jul 8, 2019
In reply to @bumble81 "All of my blood work is in and as I suspected, I do not have Lupus..." + (show)
@bumble81

All of my blood work is in and as I suspected, I do not have Lupus and my ANA is negative. My ferritin and Sed rate is all normal. Not sure what else is left to test for.

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Have you had brain MRI

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1 reply
bumble81 | @bumble81 | Jul 8, 2019
In reply to @caregiver49 "Have you had brain MRI" + (show)
@caregiver49

Have you had brain MRI

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I had one in 2015 that found 7 periventricular lesions. Then another December 2018 that found one additional small punctate lesion on right parietal lobe.

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duke77 | @duke77 | Jul 16, 2019
In reply to @mlk1956 "Hi, my name is Michelle" + (show)
@mlk1956

Hi, my name is Michelle

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Hi Michelle I'm Kevin I have chairi!

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Moderator
Lisa Lucier, Moderator | @lisalucier | Jul 16, 2019
In reply to @mlk1956 "Hi, my name is Michelle" + (show)
@mlk1956

Hi, my name is Michelle

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Hello, @mlk1956 - welcome to Mayo Clinic Connect. Glad you connected with @duke77.

Do you have a diagnosis of multiple sclerosis (MS), or are you undergoing testing to determine if you have MS?

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bumble81 | @bumble81 | Jul 17, 2019

Just back from my appointment. No lesions on my cervical spine so that's some good news. My inner ear is also in good shape.

I have been diagnosed with Ataxia.
Doc says the signals from my brain to my limbs are not working correctly but they do not know why.

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Jul 17, 2019
In reply to @bumble81 "Just back from my appointment. No lesions on my cervical spine so that's some good news...." + (show)
@bumble81

Just back from my appointment. No lesions on my cervical spine so that's some good news. My inner ear is also in good shape.

I have been diagnosed with Ataxia.
Doc says the signals from my brain to my limbs are not working correctly but they do not know why.

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Glad you are getting some answers, @bumble81. Here's a thread specifically on ataxia you may be interested in is https://connect.mayoclinic.org/discussion/ataxia-1.

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1 reply
bumble81 | @bumble81 | Jul 17, 2019
In reply to @lisalucier "Glad you are getting some answers, @bumble81. Here's a thread specifically on ataxia you may be..." + (show)
@lisalucier

Glad you are getting some answers, @bumble81. Here's a thread specifically on ataxia you may be interested in is https://connect.mayoclinic.org/discussion/ataxia-1.

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Thanks. The Ataxia is just a symptom, I do not have the disease fortunately.

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1 reply
Leonard | @jakedduck1 | Jul 18, 2019
In reply to @bumble81 "Thanks. The Ataxia is just a symptom, I do not have the disease fortunately." + (show)
@bumble81

Thanks. The Ataxia is just a symptom, I do not have the disease fortunately.

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@ bumble81

How is the Ataxia manifesting itself? Have they told you the cause?
Jake

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