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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.

donnavanpelt | @donnavanpelt | Feb 9 10:42am
In reply to @pitou "thank you for letting me know this. I will try to get back to you re..." + (show)
@pitou

thank you for letting me know this. I will try to get back to you re how it works, I'm just not sure I will be able to get back to this thread. I just joined this support group & am trying to learn how it all works. It's great, but extensive.

Jump to this post

At the top of the MS page there are page numbers in boxes. This page is 32 and if you click on that it will take you to these posts even if the current page is beyond it.

I look forward to hearing from you and hope your treatment works.

REPLY
donnavanpelt | @donnavanpelt | Feb 9 10:59am
In reply to @pitou "I live in NH. Thank you for your kind words & your input. I haven't met..." + (show)
@pitou

I live in NH. Thank you for your kind words & your input. I haven't met anyone with both. Wish I did. My neurologist has told me, she has other patients, with both. She can't tell me who they are, but she barely acknowledges the fact I have Lyme & how it could play a part in anything going on with me. I am going to ask her about Botox.

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I will ask my neurologist at my next appt what the correlation is between both. He only sees MS patients so I think he will know. My appt isn't until Apr 29 though. If your neurologist isn't familiar with Botox you should see a pain medicine specialist - they are the doctors who administer Botox.

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wahoochar | @wahoochar | Mar 14 4:11pm

Hi I'm Charlene (wahoochar)
I was diagnosed with MS at age 24' I am now 70.
It has been a wild ride, lots of relapses, but usually recovered pretty well.
I'm curious if anyone has tested positive for antibodies of John Cunningham's virus.
I have very little knowledge and not sure what it means for future.
Thank you!!!!
God Bless you all.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 14 6:58pm
In reply to @wahoochar "Hi I'm Charlene (wahoochar) I was diagnosed with MS at age 24' I am now 70...." + (show)
@wahoochar

Hi I'm Charlene (wahoochar)
I was diagnosed with MS at age 24' I am now 70.
It has been a wild ride, lots of relapses, but usually recovered pretty well.
I'm curious if anyone has tested positive for antibodies of John Cunningham's virus.
I have very little knowledge and not sure what it means for future.
Thank you!!!!
God Bless you all.

Jump to this post

Welcome @wahoochar, The unknown can be a little scary sometimes. @colleenyoung posted some information about the John Cunningham virus or JC virus earlier in the discussion that might be helpful for learning more. Here is a link to her post - https://connect.mayoclinic.org/comment/118351/.

Have you tested positive for the John Cunningham virus?

REPLY
pb50 | @pb50 | Mar 18 2:34pm
In reply to @kgrainger "Basically he just tested for MS with MRI of the brain told me he thought I..." + (show)
@kgrainger

Basically he just tested for MS with MRI of the brain told me he thought I had MS then did the spinal tap said it was negative. Told me I don’t have it and come see him as needed. I have lower limb numbness some facial numbness tightness around chest and fatigue is horrible. I also have RA and graves. I have gone through so many doctors and test with no answers

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One of Your docs need to trade some chips to get you in to the neurologist asap. I would call all of their offices and tell them you’re 10 minutes away and can you get on the cancellation list - that your other docs (primary Rheumy etc) all want you to see a Neuro and you really need a diagnosis so you can pursue some kind of treatment.

REPLY
donnavanpelt | @donnavanpelt | Apr 9 9:54am
In reply to @pitou "thank you for letting me know this. I will try to get back to you re..." + (show)
@pitou

thank you for letting me know this. I will try to get back to you re how it works, I'm just not sure I will be able to get back to this thread. I just joined this support group & am trying to learn how it all works. It's great, but extensive.

Jump to this post

Have you tried Lyrica or Botox yet? I still plan on asking my neurologist about Lyme disease but my appt has been moved to Jun 4. He has a lot of speaking engagements so this happens almost every other appt. I hope you're doing well.

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