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?

@kcowan16

@darlia I completely understand your frustration with not having call backs from doctors offices and they don’t know what the scans they ordered mean. I am in agreement with everyone else that a trip to Mayo might be beneficial into to finding out what is wrong with you. I had to make that trip myself to find out what was wrong with me.

Jump to this post

@kcowan16

Yes, I hope that the meds will help you to take on the seasonal changes without any difficult flares. Here are some websites that talk about MS flare-ups: http://www.nationalmssociety.org/Treating-MS/Managing-Relapses and http://www.webmd.com/multiple-sclerosis/ms-flare-causes#2

Teresa

REPLY
@disneyfan

I had a rough weekend and I am just now feeling up to writing. Our church had their annual Prairie Fest and we were there from 5-10:30 on Friday, on Saturday from 12-10:30, and on Sunday from 11-5 after church. My arms were so sore today I couldn’t put on my socks because I could barely raise my arm and my muscles hurt. My legs were numb and so stiff it hurt to bend my knees. I had shooting pain down my neck and back and my fingers were stiff with tingling pain. I had headaches that wouldn’t go away even with meds. My face is numb on one side and I can barely hear out the ear on that side. I am feeling tired so I will close for now.

Jump to this post

Hi @disneyfan, I find that I have to limit my activities to make sure I don’t over do it. My body does the same thing to me when I don’t take things slow and easy. It is so easy to get wrapped up in the fun without realizing it’s going to cause some pain and soreness later.

Hoping you recover quickly. John

REPLY

Today I am feeling much better just have a headache and earache besides the usual pains. This festival is something our church has and the name is just what we call ours because it is built on a prairie that we maintain. I am doing laundry because my wife starts school tomorrow and my daughter starts next week. I have a hard time during school season because before I got this PPMS I was a special education teacher. I really miss the classroom and the kids.

REPLY
@disneyfan

Today I am feeling much better just have a headache and earache besides the usual pains. This festival is something our church has and the name is just what we call ours because it is built on a prairie that we maintain. I am doing laundry because my wife starts school tomorrow and my daughter starts next week. I have a hard time during school season because before I got this PPMS I was a special education teacher. I really miss the classroom and the kids.

Jump to this post

@disneyfan

I’m sure you do miss your job. I am glad to hear that you are feeling better.

Teresa

REPLY
@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!

Jump to this post

Hi Teresa,

I posted last night on my FGFR3 post on my latest thoughts. Thanks. Darlia

REPLY

I was just diagnosed with MS. Anyone out there? 🙂

REPLY
@1445

I was just diagnosed with MS. Anyone out there? 🙂

Jump to this post

Welcome to Connect, @1445.
You’ll notice that I moved your message to this discussion group where members are talking about living with multiple sclerosis. I encourage you to click VIEW & REPLY in the email notification and read through the past and recent posts where you’ll meet @ydawson @chefbrown @ricksraleigh @tashanharrell @pinkbooks9 @kcowan16 @disneyfan @raegun67 and others.

We look forward to getting to know you. Would you be comfortable sharing what led to your diagnosis of MS? How are you doing?

REPLY
@1445

I was just diagnosed with MS. Anyone out there? 🙂

Jump to this post

I was diagnosed dec

REPLY

I was diagnosed Dec,finally MS meds march have been through 3diffrent drs. Now have one that says the pain I feel is not MS because MS doesn’t cause pain its stress causing the pain. So do I find yet another Dr?

REPLY

Hello @tashanharrell

I am sorry to hear of your recent MS diagnosis and difficulty with pain. I did a little online research and found this information about MS and Pain. This comes from the MS Society and their information is pretty reliable. It does appear as if pain is definitely a symptom of MS. http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Pain. As you can see, there is also some info about meds that can help with MS pain.

Also, here is some info from Mayo Clinic, and they mention pain from muscle stiffness and/or muscle spasms, http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/dxc-20131884

We would like to get to know you better, if you feel comfortable sharing more about yourself, please let us know what led to your MS diagnosis? Were you having balance/gait problems? Were you diagnosed with a MRI or a lumbar puncture?

Teresa

REPLY
@tashanharrell

I was diagnosed Dec,finally MS meds march have been through 3diffrent drs. Now have one that says the pain I feel is not MS because MS doesn’t cause pain its stress causing the pain. So do I find yet another Dr?

Jump to this post

Hello @tashanharrell,

I do not have MS but do have a few other autoimmune health issues. Dr. Terry Wahls got me started looking into my diet by her MS story. I’ve always known diet was important but never really focused on changing my lifestyle until a little over a year ago when I read her book about her diet and how it’s helped with her MS symptoms. I thought you might find her TED Talk interesting. She has several on YouTube. Here is the link to her TED Talk – How I Went From Wheelchair to Walking By Changing My Diet:

John

REPLY
@disneyfan

Today I am feeling much better just have a headache and earache besides the usual pains. This festival is something our church has and the name is just what we call ours because it is built on a prairie that we maintain. I am doing laundry because my wife starts school tomorrow and my daughter starts next week. I have a hard time during school season because before I got this PPMS I was a special education teacher. I really miss the classroom and the kids.

Jump to this post

Have been busy getting my daughter ready for school(she started 8/23) and watching the eclipse with both of my daughters. Yesterday I went shopping at 2 stores with my daughters and when we came home my oldest daughter mowed the grass and I weeded the yards and the gardens. My youngest daughter got all the laundry ready to wash and loaded the dishwasher. Before I went outside I put in a load of laundry and when I came inside I started the dishwasher. I finished the laundry and folded it before bedtime. After dinner I went outside and filled all the bird feeders. My legs have been feeling a lot better since my 2nd infusion of Ocrevus. I still have the pain from my hips up along with all my ailments. I was wondering if anyone has experienced these symptoms I am having. One side of my face is numb and I can barely hear with that ear. When I chew something I can hear it in my ear and also in my head. My glands feel like they are swollen or hard. Has anyone ever had anything like this?

REPLY
@disneyfan

Today I am feeling much better just have a headache and earache besides the usual pains. This festival is something our church has and the name is just what we call ours because it is built on a prairie that we maintain. I am doing laundry because my wife starts school tomorrow and my daughter starts next week. I have a hard time during school season because before I got this PPMS I was a special education teacher. I really miss the classroom and the kids.

Jump to this post

@disneyfan

While we wait for others to respond to your post, have you asked your doctor if these are typical symptoms following your infusion of Ocrevus?

Teresa

REPLY
@disneyfan

Today I am feeling much better just have a headache and earache besides the usual pains. This festival is something our church has and the name is just what we call ours because it is built on a prairie that we maintain. I am doing laundry because my wife starts school tomorrow and my daughter starts next week. I have a hard time during school season because before I got this PPMS I was a special education teacher. I really miss the classroom and the kids.

Jump to this post

Hi @disneyfan,
How are your side effects tonight? Same, better, worse?

I came across this article from MS News Today https://multiplesclerosisnewstoday.com/2017/04/03/points-multiple-sclerosis-patients-should-know-about-ocrevus-its-use/ It lists some of the possible side effects of Ocrevus as “skin itching, rash and reddening, difficulties breathing, and throat irritation or swelling, flushing, blood pressure drops, fever, fatigue, headache, dizziness, nausea, and a racing heartbeat.” Some of these may be related to your feelings of swollen glands and numbness. Have you told your doctor about these symptoms you’re having? I think you should.

REPLY
@disneyfan

Today I am feeling much better just have a headache and earache besides the usual pains. This festival is something our church has and the name is just what we call ours because it is built on a prairie that we maintain. I am doing laundry because my wife starts school tomorrow and my daughter starts next week. I have a hard time during school season because before I got this PPMS I was a special education teacher. I really miss the classroom and the kids.

Jump to this post

I am going to check with my doctor and thanks for the info from the article. I am about the same, maybe a little less swelling. I have these symptoms every day, some days they get a little better but then it goes back to hurting like it always does. It never goes totally away.

REPLY
Please login or register to post a reply.