Multiple Sclerosis (MS) - please introduce yourself

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.

Profile picture for Lisa Lucier, Moderator @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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Profile picture for bumble81 @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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Profile picture for caregiver49 @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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Profile picture for mlk1956 @mlk1956

Hi, my name is Michelle

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Hi Michelle I'm Kevin I have chairi!

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Profile picture for mlk1956 @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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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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Profile picture for bumble81 @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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Profile picture for Lisa Lucier, Moderator @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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Profile picture for bumble81 @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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