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?

I just recently viewed a couple of videos that deal with MS and the emotional toll that this disease takes on MS patients. Please take a look at the videos and then let’s discuss how we can deal with the feelings of losses on both physical and emotional levels. http://bit.ly/2gKTP2t and http://mymsaa.org/ms-information/videos/.

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@hopeful33250

I just recently viewed a couple of videos that deal with MS and the emotional toll that this disease takes on MS patients. Please take a look at the videos and then let’s discuss how we can deal with the feelings of losses on both physical and emotional levels. http://bit.ly/2gKTP2t and http://mymsaa.org/ms-information/videos/.

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Thanks for posting these videos about MS and emotions, Teresa.

@ydawson @ricksraleigh @nana52 @chefbrown – We haven’t heard from you in a while. How are you doing? How were/are the holidays for you?

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@nana52

my adult daughter was diagnosed with MS and I see changes in her memory and her attention span. she is in constant pain and looses everything. Leave water running and flooded the house twice. burned her leg 2nd and 3rd degree burns and didn’t know it. fell flat on her face and said she just slipped. Please help me understand this disease. she seems aloof.

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@ydawson thank you for saying all MS cases are different. My sister was diagnosed with MS 4 months ago and it is progressive. I would love advice from other patients on what I can do to best support her? It is difficult because we are in different states. I would appreciate any advice. @ricksraleigh I see that you posted that your Mom has progressive MS also, how is she doing?

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Hello everyone!

My dad’s MRI shows demyelination and I’m waiting on doctor’s word on it. I’ll then know for sure what is the actual issue that needs to be tackled.

I learnt a bunch reading this discussion thread (esp @ydawson‘s answers) and finding relevant resources to know more. Thank you @kanaazpereira for letting me know about this thread. I’ll update soon.

Regards.

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@vin66197 Thanks for your post and welcome to Mayo Connect! We are glad that you shared your dad’s story and we look forward to hearing from you in the future as you learn more about your dad’s diagnosis and treatment. Your dad is very fortunate to have you on his side! If you care to share more, would you please tell us what your dad’s symptoms are as well as his age.

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Hi I’m Tasha.I was diagnosed with MS in Dec .. I don’t really know how to deal with all still and don’t have anyone to talk to that can understand..

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@tashanharrell Hello Tasha and welcome to Mayo Connect. I am sorry to hear of your diagnosis of MS. Neurological disorders are difficult to deal with and understand. There are others at Mayo Connect who share this diagnosis and I’m sure that you will be hearing from some of them. in the meantime, please feel free to share with us how your diagnosis came about. What kind of symptoms were you having and how long did it take to get a diagnosis? Are you currently being treated with infusions or other meds? If you are not familiar with the MS Society, please check out their website at http://www.nationalmssociety.org/. They have online support groups as well as in-person support groups throughout the country. You can see where they are located on their website. As a general rule, the more you understand about a disorder like this, the better off you are. Education about your health can be very empowering. It helps you to feel like you can take the knowledge you’ve gained and become your own advocate for good care. I encourage you to learn as much as you can and to exercise according to your doctor’s directions and stay positive! Teresa

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So I was diagnosed in dec of last year. I’m on Abagio, it was so hard to even get me on it since I was admitted to the er and this is where they told me. It was horrible. the dr came in told me you have ms and it was not cureable ,then got a call and left .I was in the room alone for 30 min before anyone even came to check on me.O i was on high dose pain killers for the head pain.. So I was freaking out bad. My husband and kids came in saw me in mthat moment. then admitted for 5 days of blood work, cat scan, 2 mri’s ,spinal tap. they kinda told me about ms but not really clear on it. It was hard to get in to a dr. first one that is supposed to be the best here in ATX, was kinda trying to push me into a trial. he still didn’t really tell me anything. Next dr has been hard to get a hold of.I have all these weird pains and weird stuff going on .not sure how normal for ms it is or if I need to go get steroids again. I have only met people to talk to yesterday that has it. All anyones really said don’t feel sorry for your self you will have pain and no cure. so frustrating.So they do think I have had this for a long time but just resently found out.I just need to get all this out and have people who understand and be able to say more then move on. its still new. sad and angry and confused..okay thank you for reading my manic rant.

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@tashanharrell

Hi I’m Tasha.I was diagnosed with MS in Dec .. I don’t really know how to deal with all still and don’t have anyone to talk to that can understand..

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Hello Tasha (@tashanharrell), Welcome to Connect. You have come to the right place to share and connect with others with MS. I do not have MS but do have another autoimmune disease, polymyalgia rheumatica. Teresa shared a post (4 above yours – Posted by @hopeful33250, Dec 14, 2016) with links to videos that you might want to watch and discuss with others. Here are the links in Teresa’s post above that deal with MS and the emotional toll that this disease takes on MS patients.

http://bit.ly/2gKTP2t and http://mymsaa.org/ms-information/videos/.

A book that I found interesting that is written by someone who has MS started me on my journey of possible diet and nutrition changes that I can make to help my autoimmune disease and slow down progression. You may find it interesting also – http://terrywahls.com/about/about-terry-wahls/.

John

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@tashanharrell

So I was diagnosed in dec of last year. I’m on Abagio, it was so hard to even get me on it since I was admitted to the er and this is where they told me. It was horrible. the dr came in told me you have ms and it was not cureable ,then got a call and left .I was in the room alone for 30 min before anyone even came to check on me.O i was on high dose pain killers for the head pain.. So I was freaking out bad. My husband and kids came in saw me in mthat moment. then admitted for 5 days of blood work, cat scan, 2 mri’s ,spinal tap. they kinda told me about ms but not really clear on it. It was hard to get in to a dr. first one that is supposed to be the best here in ATX, was kinda trying to push me into a trial. he still didn’t really tell me anything. Next dr has been hard to get a hold of.I have all these weird pains and weird stuff going on .not sure how normal for ms it is or if I need to go get steroids again. I have only met people to talk to yesterday that has it. All anyones really said don’t feel sorry for your self you will have pain and no cure. so frustrating.So they do think I have had this for a long time but just resently found out.I just need to get all this out and have people who understand and be able to say more then move on. its still new. sad and angry and confused..okay thank you for reading my manic rant.

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Hello I understand your pain I was diagnosed in September and it is scary and confusing, but God got the last say so! I am taking an infusion treatment because I have the JVC that can cause PLM that is a brain virus that can kill u in a year times with all the different medications, the only medication that can stop the PLM is Rituxan may prove to be a highly effective treatment for the most common form of multiple sclerosis, if results from a small, phase II trial are confirmed. In the study, sponsored by the drug’s manufacturers, patients with relapsing-remitting MS who were treated with a single course of Rituxan showed rapid reductions in the inflammatory brain lesions that are a hallmark of the disease. And after nearly a year of follow-up, half as many patients treated with the drug had experienced clinically significant relapses as patients in the placebo arm of the study. I hope this been helpful maybe you can ask your doctor about this medication.

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thank you I still need to get the test.is that the infusion that takes 6 hors and you have to get it once a week or month? I’m not liking the abagio. but not sure if its even working. but only been on it 3 weeks.

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@tashanharrell I’m not familiar with the different types of infusions for MS but I know there is more than one. While, I’ve never had an MS diagnosis, I do have a neurological problem that was eventually diagnosed as Parkinson’s, however, the first doctor that I saw thought it was early-stage MS, so I’ve become familiar with the disorder and I understand how difficult it is to deal with. When you said, “I still need to get the test” what test are you referring to? Is it an MRI? Please keep in touch with Mayo Connect. We are here to offer you support. Teresa

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@tashanharrell

So I was diagnosed in dec of last year. I’m on Abagio, it was so hard to even get me on it since I was admitted to the er and this is where they told me. It was horrible. the dr came in told me you have ms and it was not cureable ,then got a call and left .I was in the room alone for 30 min before anyone even came to check on me.O i was on high dose pain killers for the head pain.. So I was freaking out bad. My husband and kids came in saw me in mthat moment. then admitted for 5 days of blood work, cat scan, 2 mri’s ,spinal tap. they kinda told me about ms but not really clear on it. It was hard to get in to a dr. first one that is supposed to be the best here in ATX, was kinda trying to push me into a trial. he still didn’t really tell me anything. Next dr has been hard to get a hold of.I have all these weird pains and weird stuff going on .not sure how normal for ms it is or if I need to go get steroids again. I have only met people to talk to yesterday that has it. All anyones really said don’t feel sorry for your self you will have pain and no cure. so frustrating.So they do think I have had this for a long time but just resently found out.I just need to get all this out and have people who understand and be able to say more then move on. its still new. sad and angry and confused..okay thank you for reading my manic rant.

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@ydawson Thanks for adding your story about MS. Could you please explain what you mean by “I have the JVC that can cause PLM”? Teresa

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@tashanharrell

So I was diagnosed in dec of last year. I’m on Abagio, it was so hard to even get me on it since I was admitted to the er and this is where they told me. It was horrible. the dr came in told me you have ms and it was not cureable ,then got a call and left .I was in the room alone for 30 min before anyone even came to check on me.O i was on high dose pain killers for the head pain.. So I was freaking out bad. My husband and kids came in saw me in mthat moment. then admitted for 5 days of blood work, cat scan, 2 mri’s ,spinal tap. they kinda told me about ms but not really clear on it. It was hard to get in to a dr. first one that is supposed to be the best here in ATX, was kinda trying to push me into a trial. he still didn’t really tell me anything. Next dr has been hard to get a hold of.I have all these weird pains and weird stuff going on .not sure how normal for ms it is or if I need to go get steroids again. I have only met people to talk to yesterday that has it. All anyones really said don’t feel sorry for your self you will have pain and no cure. so frustrating.So they do think I have had this for a long time but just resently found out.I just need to get all this out and have people who understand and be able to say more then move on. its still new. sad and angry and confused..okay thank you for reading my manic rant.

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@tashanharrell So sorry to hear that you have not had some good explanations and support. Teresa

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the test is blood test for JVC.

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