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?

@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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My name is Robert Gartshore and I was recently diagnosed with primary progressive multiple sclerosis. I just had my first treatment of Ocrevus and
I am still getting used to the condition.

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@disneyfan

My name is Robert Gartshore and I was recently diagnosed with primary progressive multiple sclerosis. I just had my first treatment of Ocrevus and
I am still getting used to the condition.

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Hello @disneyfan, welcome to Connect! Thank you for introducing yourself to the other members of the MS group.

@disneyfan (Robert), while we wait for some of the other members to jump in and introduce themselves, would you mind sharing how your first treatment of ocrevus went? Is there anything particular about your new diagnosis that you are having trouble with getting used to that you would like to ask the other members about?

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@disneyfan

My name is Robert Gartshore and I was recently diagnosed with primary progressive multiple sclerosis. I just had my first treatment of Ocrevus and
I am still getting used to the condition.

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Hello Robert, @disneyfan

I would like to add my welcome to you along with Justin’s. We look forward to getting to know you in the future and providing you with support as you walk this journey.

While MS is a difficult diagnosis to face you are doing well to seek out support and Mayo Connect is a great place to receive that support. I’m always interested in the path people walk down before a neurological diagnosis comes about, as I also have a neurological disorder (not MS). If you are comfortable doing so, please share with us: How long were you experiencing symptoms before a diagnosis came about? What tests proved conclusively that you had MS? What seems to be the worse symptom that you are facing right now?

Teresa

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