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?

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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@jimhd

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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@jimhd I have been wondering about all of your upcoming tests, Jim. Keep in touch and let us know how you are doing. Teresa

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@jimhd

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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@hopeful33250

Tuesday, my 2nd cataract surgery went well. I’m looking forward to getting new glasses and seeing the improvement. Yesterday, I had my first appointment with the speech therapist, and did some swallowing tests so she could see what’s going on from an external view. Next week I’m having a barium swallow x-ray. While the barium is present, I’ll swallow various things to see, for one thing, if I’m at risk for aspirating. After that appointment, I had a follow-up blood draw, and found that I’m still bleeding internally somewhere. Then, I had an MRI of my brain and spine as part of an MS assessment. I didn’t enjoy the MRI at all.

More to come next week. I can’t have the spinal cord stimulator implanted until we figure out where I’m bleeding.

Jim

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Hi, I’m Kim I was just diagnosed with MS in April 2017 @ the Mayo Clinic. Not exactly sure what to expect from this disease but determined to live the best life I can!

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Hi, I’m Raeann. I started having symptoms in 2001, but wasn’t diagnosed until February 2014. I was diagnosed with relapsing remitting.I have never had a relapse, or I have been in a relapse since 2001; but I have had steadily worsening symptoms. In April, my neuro said I now have secondary progressive. I suffer from the majority of common symptoms, save optic neuritis, as well as an assortment of the not so common ones. I have good days and bad, who doesn’t. I don’t go for the slogans that “MS doesn’t have me” because, dang it, it does. Every single move I make is influenced by MS. It sucks, but this is the hand I was dealt. So here I am, playing these cards, to the best of my ability.

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@kcowan16

Hi, I’m Kim I was just diagnosed with MS in April 2017 @ the Mayo Clinic. Not exactly sure what to expect from this disease but determined to live the best life I can!

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Hello Kim (@kcowan16) and welcome to Mayo Connect. I am sorry to hear of your recent diagnosis but I’m pleased to hear your of positive attitude. Attitude is so important when you are dealing with a chronic illness. As we look forward to getting to know you better, please share with us as you are comfortable doing so, what symptoms and diagnostic tests led to the MS diagnosis. How long has MS been suspected? Have you begun any treatment yet?

Teresa

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@raegun67

Hi, I’m Raeann. I started having symptoms in 2001, but wasn’t diagnosed until February 2014. I was diagnosed with relapsing remitting.I have never had a relapse, or I have been in a relapse since 2001; but I have had steadily worsening symptoms. In April, my neuro said I now have secondary progressive. I suffer from the majority of common symptoms, save optic neuritis, as well as an assortment of the not so common ones. I have good days and bad, who doesn’t. I don’t go for the slogans that “MS doesn’t have me” because, dang it, it does. Every single move I make is influenced by MS. It sucks, but this is the hand I was dealt. So here I am, playing these cards, to the best of my ability.

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Hello Raeann, (@raegun67). Welcome to Mayo Connect.

I am sorry to hear that your MS is progressing – I’m sure that must be disheartening. Share with us, if you will, some of your more uncomfortable symptoms. Have you had any physical therapy yet? Water exercise can be quite good for MS because you don’t get overheated. Have you tried any other treatments?

Teresa

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@kcowan16

Hi, I’m Kim I was just diagnosed with MS in April 2017 @ the Mayo Clinic. Not exactly sure what to expect from this disease but determined to live the best life I can!

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@hopeful33250 Honestly had my suspicions of MS during my 3 flare up in January but the doctors at did not think it was MS. I had been experiencing flares since 2015. Some of my symptoms are needle and pins feelings, burning sensation, numbness, bowel issues, tightness in my chest like I had a tight girdle on (which I later found out is the “MS hug”), headaches, sensitivity to hot and cold and a host of other issues. My first flare lasted for 8 weeks before I started to get better.

During my last flare I realized I was not bouncing back to normal I took matters in my own hands and sort outside medical care. I have had so many test that it will make your head spin. What lead to the diagnosis was the brain and Cervical Spine MRI and spinal tap. I have started therapy and just completed my second dose.

There is not a day I am not in pain. I don’t even know how a painless day feels anymore. But I try to stay active and move foward with life because I have too.

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@kcowan16

Hi, I’m Kim I was just diagnosed with MS in April 2017 @ the Mayo Clinic. Not exactly sure what to expect from this disease but determined to live the best life I can!

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Kim @kcowan16

Yours has been quite a journey! Most of us who have neurological disorders go through a long period of time before we get to the diagnosis and treatment. There are a lot of new meds to keep MS symptoms (and sometimes progression) at bay, so this is a good time for MS patients. Physical therapy and exercise can be very therapeutic for pain and stiffness, especially water exercise – because you don’t get overheated. Maybe it is too soon for that. Has your doctor recommended any physical therapy or exercise plan, yet?

Teresa

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@kcowan16

Hi, I’m Kim I was just diagnosed with MS in April 2017 @ the Mayo Clinic. Not exactly sure what to expect from this disease but determined to live the best life I can!

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@hopeful33250 yes, exercise was recommended, so I joined a gym and will start aqua aerobics and will try Yoga soon.

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