MS Tuesdays

I found this really interesting topic on MS on one of the other blogs I read.  I am not going to quote his blog but I went and found a article on it.  They have found a way to use stem cells to make the myelin sheath around the nerves that is damaged by when the immune system attacks the nerves in MS patients.  The research was done at Universities of Cambridge and Edinburgh.  They found the mechanism to make the stem cells start regenerating myelin around the nerves.  The myelin insulates the nerves like the the plastic that surrounds a copper wire.  When the myelin gets damaged the nerve doesn’t work as well or even work at all.  They are also hoping that the research done with help people develop drugs that will promote myelin repair in MS patients
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So if there is away to fix what damage has been done then they can reverse the damage and even cure the disease.  Now this has only been done in rats but if they can do it there then they are getting closer to trying it  in humans.  I have always figured that stem cells were going to be the way to helping people with MS and I am so glad to see that it can possible work.

I am out of ideas on what to post about so if you want to know something please leave a comment.  I am not going to do this every week anymore because I don’t know what to post about.  So please leave me comments on what you want to know and I will write it up for next Tuesday.

Sources:
http://www.aolhealth.com/2010/12/06/new-hope-for-repairing-multiple-sclerosis-damage/
http://www.medicalnewstoday.com/sections/multiple_sclerosis/
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Margaret Tidwell

I am a 32-year-old blogger. I write about my life and my struggles with Multiple Sclerosis. I also am a huge book worm and I have been doing book reviews for years now. I also blog about adoption, Multiple Sclerosis, and things that go on in my life.

Margaret Tidwell

Margaret Tidwell

Margaret Tidwell

Margaret Tidwell

Latest posts by Margaret Tidwell (see all)

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MS Tuesdays

I know I post about MS on Tuesdays but I have been having a rough time lately and couldn’t find the motivation to write about it this week.  I am going to take a break and hopefully write about it next week.  I did want to write about something else though.  This weekend on Facebook I posted the following status: Wants to know. If she were to die tomorrow, what is the last thing that you would want to say to me? (answers below or messaged to me).  The only response that I got was from a lady that I have gotten to know really well since I had my daughter.  I wanted to post what she wrote to me and then write her a letter because I know she reads my blog!
Her Response: 
So please tell me that you are not planning on dying tomorrow! What would I say about you? (After I kicked your butt for dying!) I would say that you are one of the most courageous people I have ever met in my life. Instead of wallowing in self-pity for the hard things in life that have come your way, you have chosen to take the bull by the horns and fight to make a difference. You are truly one of the most unselfish people I have ever met. You have the ability to look at all sides of a situation with wisdom and an open mind. You are a force to be reckoned with! You are a loving person who wants to make a difference in this world, especially for the injustice that is done by bullying and educating people about adoption and MS. You have been a blessing to your Grandma Tidwell and you have given her the opportunity to be the beautiful daughter that she could never give birth to. I know that…moms talk to each other about their kids, you know…and she is grateful for you. You have given another family the precious gift of your own daughter and have never looked back on that decision. You have fulfilled many purposes in this life and have many purposes yet to fill, and positive differences to make in the lives of many. You are a bright light in the eyes of many people….without even meaning to shine. You understand what it means to love unconditionally and judge not. You are beautiful inside and out and have left your footprints on my heart by teaching me things that I never would have learned, had I not rubbed shoulders with you. You love a good Dr. Pepper, the game of football, your cubs, and junk food. You are proud of your Chippewa heritage and love to travel. You have the gift of gab, the love of shopping, and the talent of writing. You honor your country. You drive a cool car! Your shoulders bear heavy burdens, but you hold them high with dignity and grace throughout your journey here. You are the woman I hope to become someday…and I love you. You are you…and that’s all you need to be.

Dear Jill,

I want to thank you for what you said.  You will never know how your words have helped me get through the past days.  I tend to pull away from people when I get depressed because I get mean but what you said made me see the good that others see in me.  I had a great time at breakfast and we definitely need to do it more often.  I am writing this here so that people can see it!!!!  This isn’t long but I want to thank you and tell you I am glad you are in my life!!!!!


Love
Margaret

Margaret Tidwell

I am a 32-year-old blogger. I write about my life and my struggles with Multiple Sclerosis. I also am a huge book worm and I have been doing book reviews for years now. I also blog about adoption, Multiple Sclerosis, and things that go on in my life.

Margaret Tidwell

Margaret Tidwell

Margaret Tidwell

Margaret Tidwell

Latest posts by Margaret Tidwell (see all)

Comments

  1. Absolutely amazing!! I cant say much more 🙂 Thank god for Jill!

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MS Tuesdays

I had another rough week so I am going to post about some things that are going on with me right now.  I had my last infusion a few weeks ago and it usually makes me feel better but the last few months it hasn’t really been working like it used to.  That isn’t saying it isn’t doing it job it just isn’t make me feel better.  After my last MRI I was told I am still stable and that is a huge thing for me.  Ever since I have been diagnosed I have never been stable.  I am happy for that I just wish that I also felt better than what I do.  It is great to know the disease isn’t getting worse but I am feeling worse than I have ever felt.  I guess this is just my new normal and that is really hard for me to except right now.  I wish I felt like I was stable but one day this will be normal to me as well.  I just want to be a 25 year old that can go out and party on the weekends and not worry about over doing it or not being able to work on Monday because I did to much over the weekend.  God knows why he gave this to me and not someone else.  I just trust that one day I will know why that is.

This is a short post but if you want to know anything about MS please leave a comment and I will for sure right a post about it!

Margaret Tidwell

I am a 32-year-old blogger. I write about my life and my struggles with Multiple Sclerosis. I also am a huge book worm and I have been doing book reviews for years now. I also blog about adoption, Multiple Sclerosis, and things that go on in my life.

Margaret Tidwell

Margaret Tidwell

Margaret Tidwell

Margaret Tidwell

Latest posts by Margaret Tidwell (see all)

Comments

  1. Oh honey. I'm so sorry. I'm sorry you have to go through all this. I know what you mean about the "disease" being stable, but "we" feel like sh!t. Hang in there!

  2. scrapwordsmom says:

    Sorry to hear about your load. I am in your SITS group. Though I would stop by and say hi!!

    Leslie

  3. Hello Margaret,

    I'm really touched by reading through your story. So much for a young person to have to go through! Bravo to you for having the courage to share your experience, thought painful, with others. I can imagine that it is somewhat cathartic to "blog it out". I'm so glad to have met you and I'm sending you thoughts of strength – be well, my dear.

  4. Coming by from SITS Hare group. It's takes courage to share your story. I wish you all the best.

  5. I don't know much about MS but I do know a thing or two about illness and not feeling well. It sucks when it seems your "new normal" isn't as sunshiney as you would like.

    I'm one of your Hare groupies, dropping in to say hello.

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MS Tuesdays

This week is invisible illness week.  I am going re-post my story so that people can read it that maybe didn’t get a chance to read it the first time.
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First I am going to post some helpful information before I post my story so that you will be able to follow along a little bit better.
  • Multiple Sclerosis is what they call an autoimmune disease.  This means that the person immune system for some reason decided it is going to attack so part of the body that it shouldn’t attack.   In MS the immune system decides it is going to attack the nerves of the CNS (central nervous system).  They are not sure what triggers the immune system to think that part of the body is a invader and needs to be attacked.
  • There are a lot of different symptoms that go along with this disease.  I am going to list some of the most common ones: Fatigue, problems with walking, numbness, tingling, slurred speech, tremors, stiffness, problems with vision, cognition, speech, and elimination.  Every person with MS has different symptoms.
  • Anyone can get MS.  Women are more like to get it than men and so are people with a lighter pigmentation to there skin.  So Montel Williams who has MS is a real rarity.  They think MS has a genetic link but they aren’t sure what it is.  In my case there is no one in my family history of it.  You usually get diagnosed between the ages of 20-50.  I was a rarity and was diagnosed at age 16.  Although younger patients are now getting diagnosed because doctors are starting to look for it at a younger ages.
  • MS symptoms happen when the immune system attacks the myelin around the nerves.  If you think of your nerves like a wire the myelin would be the protective covering around the wire.  If the nerve underneath the myelin gets hurt that is what causes the symptoms and some times permanent disabilities.
  • The body tries to repair the damage that is done but it is never the same the the nerve never really functions the same.
  • MS is rarely fatal.  Most of the time people with MS with get a common cold of the flu and that is what will end up taking their lives.
  • There are several treatments out there that each do things differently.  I am on one called Tysabri and it is the most expensive and most dangerous of the drugs.  All of the current MS treatments are expensive and it makes it hard for people like me who have the disease to get the treatments that they need.  There is always new treatments in the works and exciting things happening in research that hold so much hope for future generations.
  • There is currently no cure for MS.

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My Story

I began to get sick when I was in 10th grade.  The first really symptom that I can remember is my left leg started to drag.  It would just stop working at random times.  I can remember in gym class that year we had to run the mile for a grade and I did my best but I was going to fail the class because I could run it fast enough because my leg was dragging.   We went to the doctors and lets just say the only reason they did an MRI was because my grandma pushed for it.  When that came back they called us in because they needed to talk to us.  They said that there was what they call lesions on the brain.  They show up as white spots on the brain.  They told us that they needed to do a spinal tap to rule out MS.

The spinal tap in and of it self was a huge ordeal to say the least.  I got the spinal tap on a Thursday and by Saturday I was so sick.  I had a huge headache and was throwing up.  So we went to the ER because it was obvious that my spinal tap hadn’t sealed.  When we got the ER they made me lay in the waiting for about an hour until they took me back to a room.  After they knew what was going on they wanted to send me home because the guy that could fix it was on call and he didn’t want to come and do a blood patch.  He finally came in after my grandparents raised a living hell because I could have died if I didn’t get a blood patch ASAP.
When the results of the spinal tap came back they called us in again and told my and my grandparents and I had Multiple Sclerosis.  They wanted to start me right away on Avonex.  I don’t really remember much of the next couple of months.  I think I was still numb to the whole situation.  What I do remember is how sick the medication made me every weekend.  I took the shot on Friday nights and spent the whole weekend with flu like symptoms. I stopped taking that medication after awhile and started on Copaxone.  With that one I had to take a shot everyday and that didn’t last very long either.
I was pretty stable and not much went on until a year ago and that is when my hand went numb and it got hard to do anything with them.  Slow I have been able to use them more but it feels like they are asleep all of the time anymore.  I started on Tysabri about a year ago and so far it has worked the best but I also has a major problem with it as well.  You can develop a condition known as PML that will basically make you a vegetable.  They are finding out that the longer you are on the drug the higher your chances are of getting this serious condition. I am not sure how much longer I will be on this medication but I don’t have any other options right now.
That is my story in a nutshell.  If you have any other question feel free to ask me I will answer any questions that you may have.  

Margaret Tidwell

I am a 32-year-old blogger. I write about my life and my struggles with Multiple Sclerosis. I also am a huge book worm and I have been doing book reviews for years now. I also blog about adoption, Multiple Sclerosis, and things that go on in my life.

Margaret Tidwell

Margaret Tidwell

Margaret Tidwell

Margaret Tidwell

Latest posts by Margaret Tidwell (see all)

Comments

  1. My man's cousin has MS. I just saw her a few months ago and she was walking then, now she's in wheel chair.
    I can't believe the doctor wouldn't come in and do the blood patch! Sounds like that place is full of quacks.

  2. Stitching For Serenity says:

    Keep talking and keep sharing. It will eventually become common knowledge which hopefully will lead to greater compassion from society. I find a lot of bravery in my fellow chronics!! Hugs. Tammy

  3. MommyToTwoBoys says:

    Once again Margaret, you are so strong and such an inspiration!

  4. BlackEyedDog says:

    there's an award for you to pick up on my blog =)
    http://semicrazed.blogspot.com/2010/09/depression-ed-award-usual-30-dbj.html

    have a nice day!

    xoxo

  5. My friends MS began like that … with a numb leg. It was over a year ago, she was 30, and we can't believe how it's progressed. It's heartbreaking. She used to be very sporty and active. Her family is doing all sorts of fundraising to send her to Mexico next year to get the CCSVI procedure. And T-Bone's aunt just got back from Bulgaria where she received her CCSVI procedure, but I haven't had a chance to get any details on how she's doing yet.

    Have you thought about trying to get the CCSVI procedure done?

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