My diagnosis has been changed to MS.

    • Anonymous
      November 19, 2007 at 11:33 pm

      Hi, everyone. I just wanted to share that today my dx has been changed to MS. I’m back in the hospital with an almost identical cluster of symptoms reminiscent of what happened back in April. I had a spinal tap yesterday and EMG today, and both came back normal, so the problem is clearly not in my peripheral nervous sytem but rather in my CNS; and I never had a positive spinal tap back in April, which has always left a little doubt in my mind. So we’ve gone back to the eight white spots on the MRI of my brain, and the doctors have decided that I have MS with autonomic complications instead. When I’m having a flare, my breathing and heart rate are affected as well as creating sensory dysfunction and muscle weakness. I can barely stand up by myself again, whereas just a little over a week ago I was walking without a cane and was feeling like myself again for the first time in months. I am so scared and confused. I have two young children to take care of and many years of life left to live. I don’t know how to accept this for my future and for my family’s future. And I had become very involved with the local GBS support group and was really coming to care about the people there, and now that my diagnosis is changing, I feel like that is being ripped away from me, too. I really just don’t know what to do or thing right now. I’m in the hospital at the moment, but I hope to be able to go home by the weekend. I received one day of IVIG yesterday before they had all the test results and thought it was possible that I had CIDP, but after getting the results this morning and deciding it’s MS, I’ve been initiated on IV solumedrol treatment instead. I hope this works for me. I am just so scared right now. I feel completely lost. Sorry for the rambling post, but I really just need to get this out, as I’m trying to put on a brave face for my family so that they won’t worry about how I’m doing. They have enough to deal with in accepting this themselves; I don’t want them worrying about my mental state on top of their own emotions. Anyone who prays, please keep my family and me in your prayers. We need them desperately.

    • Anonymous
      November 19, 2007 at 11:57 pm

      Suzanne you are in my thoughts and prayers. Your post has just stopped me in my tracks and I am at a loss of what to say right now. I can not get the right words to reach my fingers! I just can not imagine what is going thru your head right now. It is hard for everyone to understand. It has to be very scarey! PM me if you need a voice on the phone and I will give you a call. I can say that you don’t have to leave this family and can still get support from us. I have learned alot about life from this group! Most of all I have learned to ask questions and open up the communications between me and my Doctors. I now ask questions and tell them what I have learned about GBS. I had one Doctor tell me she thought I had CIDP because I am taking too long to get better! I told her that she is wrong I am getting better but it takes time. Now I know you will be gathering information on MS just like you did for GBS/CIDP. (((Hugs))) What would we do without our computers?

    • Anonymous
      November 20, 2007 at 12:31 am


      I just wanted to say that I’m sorry to hear that you are going through this!! And say that just because you have MS now that does not mean that you lose your new found friends. My thoughts and prays are with you and please let us know how you are doing!

    • Anonymous
      November 20, 2007 at 7:49 am

      Suzanne, Don’t feel like you can’t be part of this Family just because your dx changed, You’re stuck with Us!!:D There are new treatments for the type of MS you are showing signs of, Relapsing/remitting. Don’t believe for one second that you are facing a life sentence! I know Many People who are living near normal lives with MS and have been for Many years. Do research and ask All sorts of questions. Your Family will roll right along with You, again its a matter of attitude, the same positive attitude you have had while dealing with what was thought to be GBS. You can do this, and You will Be The Rock that supports Your Family.
      Just wondering, did they find olig. cells in your lp? This would cement the MS dx.
      If you need someone to talk to, feel free to pm or email me.
      Huge Hugs!!!

    • Anonymous
      November 23, 2007 at 7:23 pm

      Suzanne, when my sister was 12 and I was 10 she was diagnosed with MS. Since she is now 57 we have had many years of seeing how the treatment for MS has changed. At the time, she was considered to be the youngest person in the US to be diagnosed with MS. When Cheryl said it is all about attitude she hit the nail on the head. My sister graduated from high school with her class, went on for a year and 1/2 at college and came back home to eventually hold down a job and live on her own for some time. For some reason our area is a hot spot for MS. Studies have been done, but nothing conclusive. I know many individuals with MS and am amazed at the current methods of treatment and progress.
      When I first went in with symptoms, MS was the first thing the Dr.s looked at.
      Although my sister is unable to live on her own now, her attitude has carried her a long way. You sound like the type of person who will carry on and fight this. And whatever you do, don’t leave the comfortable, confines of this forum.
      Take care, my prayers are with you.

    • November 24, 2007 at 10:06 am

      Hi Suzanne,
      Sorry to hear of your news. On a positive note, the research for ms is astounding, more so than cidp, that is for sure! There is a new study out there BHT 3009. A few months ago some one on this sight brought it up and a few days ago I started a thread asking about it and someone was kind enough to again post the info. Check out the thread for the exact info in the Science daily. Good luck to you!
      Dawn Kevies mom

    • Anonymous
      December 1, 2007 at 7:55 pm

      Hi Suzanne,

      Once a member of this family always a member, you can’t get rid of us that easily. Let me know if you need an ear, I am in southeastern ohio. Feel free to email me or call me. My name and number is with the foundation.

      Take care and god bless.

      Sherry Price
      Liasion SE Ohio

    • Anonymous
      December 1, 2007 at 11:16 pm

      How could your body be good one week and then change so drastically? No wonder you are in shock. I find the body to be remarkable in how it responds to what we do. Did anything change in your environment or your diet or your stress level? Your story brought back memories of a doctor telling me I needed a hysterectomy, told me to schedule it with his nurse, and walked out the door. I was stunned. I went to a Happy Hour, had a scotch and muttered obscenities under my breath. (This is not my style – drinking or cursing.) I went to seven other doctors who said the same thing. I did not have anything wrong except what lots of other women were going through in perimenopause. I said NO to all of them. It cleared up all by itself when my mom had a little stroke and moved in with me. What eight doctors couldn’t do without an operation, my mom did inadvertently and in two weeks. My attention was drawn to taking care of her and I did not have time to have any other symptoms.
      What I am trying to say is….sometimes we do not have to accept their diagnosis as something horrible. Two friends of mine with MS changed their diet and had great success. They also were holding anger in. I am not saying that this is what you are doing, but at least consider it. One night when I was ushering at the Tampa Bay Performing Arts Center, a woman was very upset because someone was in her seat – there were duplicate tickets. The usher was going to let her watch the show from the side and solve the problem quickly. She was out of control. But then I heard her say that she had MS. I thought to myself- that makes three people with MS and anger. How is your stress level? When I had GBS the first time, a close friend had MS and we were amazed at how similar the symptoms were. I think stressing the body ( immunizations, sprayed with DDT, flu,) is what is responsible for all of us with autoimmune problems.
      If you ever decide that you want to work wholistically to fight this, let me know. I shall be glad to help.

    • Anonymous
      December 1, 2007 at 11:22 pm

      Sorry to hear about the dx. I’m sure that MS is a very scary thing for you and your family and i’ll keep you in my prayers.
      Hope the Solu-Medrol is working for you.
      I’m sure you will learn all you can about MS and the treatments for it.

    • Anonymous
      December 2, 2007 at 1:02 pm

      Hang in there, Suzanne, and forget thinking about changing the support system you have established! There are so many similarities with GBS and MS, and other rare neurological disorders. As mentioned above, MS is not a clear cut diagnosis in that there are many, many shades of grey- varying degrees of progression and impairments that frequently show up only to go away later. Hey, at least you have awareness about what is going on, so a good treatment plan can come to bare on your health issues, as opposed to the random guessing in not knowing. What’s more, it sounds like you have a loving family, which is great therapy!

    • Anonymous
      December 2, 2007 at 1:56 pm

      How are you this day. Thinking of you and praying for you?

    • Anonymous
      December 2, 2007 at 3:51 pm

      My heart goes out to you! I’ve been baffling dr.s since my condition began in March 07.

      I have a good friend with MS who says my symptoms sound too familiar. She has had MS for 10 years now and you can’t even tell. She treats hers with dietary changes. She got me hooked on the diet when dr.s weren’t helping me…..sure enough, my autoimmune condition has improved remarkably. Yes, I still have relapses, but I also have “normal days” too!

      It is called the Swank Diet. You might want to do some research on this alternative treatment for your condition.

      I can sympathize with you as I have 3 daughters (8,6,4) and I am only 31 myself. I have times where I am not a participating member of the family, but then days I make up for that, and they all understand 🙂

      You are in my thoughts. Please keep us posted on your health 🙂


    • December 10, 2007 at 9:04 pm

      Suzanne Im sorry to hear this, but you are so invold in this family so you dont leave us. there are many help for MS and they are inventing new drugs for it. I have few friends with MS and if you realy take care of your self and listing to you body, you will get far. my sister in law was diagnoste 10 years ago and she is fine, she just take care of her self, she found out the hard way but to day she is with out any help, and she work half day.she is now 46 year old and im sure she will be every lady oldest.
      So hang in there and not let this drag you down. There is a good life with MS if you take care.