Multiple Sclerosis (MS) - please introduce yourself

Posted by Colleen Young @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?

@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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Hi all,
I thought I’d jump in to de-code some of the acronyms in this conversation.

PML stands for progressive multifocal leukoencephalopathy, which is a rare and often fatal disease characterized by damage to the white matter of the brain. It is caused by the John Cunningham virus (JCV).

The JC virus, or John Cunningham virus, is a common germ. More than half of all adults have been exposed to it. It doesn’t cause problems for most people, but it can be dangerous if you have a weak immune system.

You can read more about both here from Web MD: http://www.webmd.com/brain/jc-virus#1
Also, you can read about “The JC Virus and Risks for MS Patients” from Healthline http://www.healthline.com/health/multiple-sclerosis/jc-virus-risks-for-ms-patients#1

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I’m not sure if I have MS. Just curious. I have been a nurse for 33 years and spend a lot of time on my feet. I have always contributed my leg and foot pain to this reason until recently. I was talking to another nurse who has MS, and listened intently to her issues. I also have the pins and needles to my lower legs and feet, restless legs, sharp, shooting pain at times in my heels, sides of feet, and into my hands and fingers. Not to mention cramping of my legs, feet and hands. Various spasms in my stomach, diaphragm, legs, and feet. But over the past 6 months, I have had problems walking. My legs feel huge and don’t want to move. When I stand up after sitting, or driving, I cant walk, and I usually stand for a few minutes before I force myself to move my legs. My feet feel funny, like they don’t bend. Like I’m walking with flippers. I fatigue very easily. Simple things like doing laundry, cooking, showering, all require standing, and my legs become weak, and my feet will sting and become painful standing on them. My vision issues are the same as my coworker as well. I have had blurry vision, problems with glare, and have had black-out spots in my line of vision. These issues are so varied, it is possible I have multiple things going on, and being a nurse, I don’t want to be paranoid. Several years ago, I would wake up each morning with my arms having no feeling. Not numb, but like I didn’t have arms. A doctor told me it sounded like MS. At the time, it was the only symptom I was having and didn’t have any tests. I’m concerned because I plan to work for the next 10 -12 years. I would like to know if better nutrition would ease my symptoms.

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Hello @kburgess, welcome to Mayo Connect. I have idiopathic small fiber neuropathy (SFPN) and polymyalgia rheumatica (PMR). Fortunately for me the SFPN only presents numbness in both legs and feet – no pain. I went for over 20 years without getting a specific diagnosis because the doctor told me they could run some tests to determine if I have nerve damage. When I asked him what could be done if it is determined to be nerve damage, he told me nothing, there is no treatment. At that time the numbness was in the toes and the bottoms of both feet so I sort of let it go. Fast forward to March 2016 the numbness is more of a concern so I met with a Mayo neurologist who diagnosed idiopathic SFPN and told me the same thing as the first doctor – there are no drugs or topicals that will make the numbness better. He said just to let him know if it’s gotten any worse.

That started me on my quest for more knowledge about SFPN and autoimmune diseases in general. I ran across a book by Dr. Terry Wahls who has MS and how she used nutrition to help with her symptoms. She does have an amazing story to tell – http://terrywahls.com/about/about-terry-wahls/. I did buy her book and it got me started on eating more healthy – not saying I don’t have my days though :-). The green smoothie has become my breakfast at least 4 to 5 days a week. I did find a regimen or protocol of supplements that I believe has stopped or is reversing the nerve damage in my legs. I started the supplements in Sept 2016 and then the numbness was just below the knees in both legs. It now feels like it is just above the ankles. It might not sound like much but I don’t expect much because of my age (73 and still fortunate enough to be working full time from home). I still share some of your problems – have to get up slowly and watch the first few steps. The wife says I’ve had the old man walk since my 50s. I have the same problem after sitting or driving for awhile, have to be careful when I first stand up.

Since you are a nurse, I’m assuming you have discussed all your symptoms and concerns with your doctor. Can you share what they said if you have met with a doctor? If not, I think might be a good idea to set up an appointment and push for answers. You are definitely a step up from me with the medical knowledge and being able to explain your symptoms and I think that helps you ask the right questions and push the doctor for an answer.

Hoping you will find the answers you need…and soon!

John

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@johnbishop

Hello @kburgess, welcome to Mayo Connect. I have idiopathic small fiber neuropathy (SFPN) and polymyalgia rheumatica (PMR). Fortunately for me the SFPN only presents numbness in both legs and feet – no pain. I went for over 20 years without getting a specific diagnosis because the doctor told me they could run some tests to determine if I have nerve damage. When I asked him what could be done if it is determined to be nerve damage, he told me nothing, there is no treatment. At that time the numbness was in the toes and the bottoms of both feet so I sort of let it go. Fast forward to March 2016 the numbness is more of a concern so I met with a Mayo neurologist who diagnosed idiopathic SFPN and told me the same thing as the first doctor – there are no drugs or topicals that will make the numbness better. He said just to let him know if it’s gotten any worse.

That started me on my quest for more knowledge about SFPN and autoimmune diseases in general. I ran across a book by Dr. Terry Wahls who has MS and how she used nutrition to help with her symptoms. She does have an amazing story to tell – http://terrywahls.com/about/about-terry-wahls/. I did buy her book and it got me started on eating more healthy – not saying I don’t have my days though :-). The green smoothie has become my breakfast at least 4 to 5 days a week. I did find a regimen or protocol of supplements that I believe has stopped or is reversing the nerve damage in my legs. I started the supplements in Sept 2016 and then the numbness was just below the knees in both legs. It now feels like it is just above the ankles. It might not sound like much but I don’t expect much because of my age (73 and still fortunate enough to be working full time from home). I still share some of your problems – have to get up slowly and watch the first few steps. The wife says I’ve had the old man walk since my 50s. I have the same problem after sitting or driving for awhile, have to be careful when I first stand up.

Since you are a nurse, I’m assuming you have discussed all your symptoms and concerns with your doctor. Can you share what they said if you have met with a doctor? If not, I think might be a good idea to set up an appointment and push for answers. You are definitely a step up from me with the medical knowledge and being able to explain your symptoms and I think that helps you ask the right questions and push the doctor for an answer.

Hoping you will find the answers you need…and soon!

John

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Thank you for the information regarding the book, I will definitely check it out. Most of my conversations with my MD’s, will result in same responses such as “getting older” and either link the complaints to my varicose veins, my extra weight, or think I am depressed. I actually have had 2 doctors and some of my nursing friends mention MS, but I do not recall any family members with MS. I have had varicose veins that bother me, and believe that I had Peripheral Vascular problems. But the problems walking, the numb, painful and dysfunctional feet drive me insane. I have always been energetic, and I love working. I’m not a person to sit. If nutrition will ease the symptoms, I will make whatever drastic changes I need to feel better and live a normal life.

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Hi kburgess,
I just wanted to add, get a diognoses as soon as possible so if it is MS you can get on medication quickly. I was diagnosed and with in two months i was put on Glatopa. My MS came out of nowhere, i never had any symptoms. Last September at age 52 i was diagnosed after being told at first i had had a stroke. Take care.
Pink.

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Hi. I’m Jim, and I interact with several connect groups – chronic pain, peripheral neuropathy, mental health, and suicide. My youngest sister has had MS for around 20 years, and I have several cousins, all from the same branch of the family, who have MS. I learned around 5 years ago that I have idiopathic peripheral neuropathy, which began with numbness and pins and needles in my feet and ankles. By now, it has progressed to severe burning pain in my feet, and some numbness has begun in my hands. I think my father and all 5 of my siblings have had neuropathy.

Along with neuropathy, I’ve accumulated several other issues – memory problems, balance, dysphagia, dizziness, double vision, ED, fatigue, a slowing down of my thinking, and other things. I also have major depressive disorder, PTSD, anxiety disorder, and suicidal ideation.

Putting all of this together, I began wondering if I had MS, so I talked with my doctor about it a week ago. He referred me to the neurologist I’d been seeing awhile back, and today I had an MRI of my brain and spine. I also met with a speech therapist this morning, to figure out how to deal with the swallowing problems.

I don’t know if the symptoms I’m experiencing are just random, unrelated issues, or if they’re indicators of MS. I don’t know if I really want to know.

Jim

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