On the road to a bone marrow stem cell transplant in 2006
I was Dx in 2000 at age 28 when I lost my eyesite in my left eye of course. Gained my eyesite back with steroids.
Lost my job and had no insurance. Dislocated my patella bone with my foot going through some wood stairs in 2003 doing outside sales.
Then Febuary 2004, I lost my feeling in my whole right leg. I had no family that lived by me. They all lived on the west coast at this time. I was turned away from a hospital with the onset of of pins and needles in my right foot. Also had numbness in my right foot. The doctor turned me away from the emergency room. I think it was a week and half later until I lost my whole feeling in my left leg. I was dealing with an abusive boyfriend who would not pay rent at all. He would not leave. This lasted six years. He would make scene in the hospital or nursing homes where I was trying to recover. The nurse thought he was weird but my friends also voiced their concerns.
I had to fight for disability and was turned down the first time. Then I applied again but took matters into my own hands an contacted my local Legislative Rep and Congressman office for help on this matter. I heard back from them within two days of my e-mail or fax. I am ever so grateful for their help for it seemed like everyone was closing the door on me. My father really had trouble with at first. My friends did not understand it totally. I pushed away because I was not living a lifestyle like was not like theirs. They had suggestions about this shot works for this person. In my case nothing worked with med's (shots). My last try was chemo to slow it down with still taking my shots and that did not work.
I finally met a wonderful lady that was 80 years old at Northwest Hospital when I went to do my chemo. She really took an interest in me. We became friends ever since then. She saw me when I could walk. On some days it was so painful and I could not put on a show for anyone. She did not know what MS was but took it upon herself to learn what it was. She embraced me more than anyone I knew. I considered my self lucky for she is the person who saved my life. She read in National Geographic about a guy in Colorado who went through a bone marrow stem cell transplant for MS. It might of been the editors friend I think. So my mother in California and me in Chicago started to investigate where any studies might be being held like that at. Sure enough there was. I contacted them that day I got the info. This was my last chance at hope with my MS that was leading me down a very bad path. No medicine could help me!
I was excepted at received a bone marrow stem transplant. Good news is I can walk and run now. I ran away from the crazy boyfriend within two hours for I was scared for my life but before was two weak to do so. It is a hard road for anyone that is faced with a disease. You started a business and now you have to learn how to run it because no one will do it for you.
This taught me the strength I had inside of me that I did not know I had. It may sound weird to be thankful for that but you have to look at something positive! You have to be thankful for everyday you got!!!
Thank you for doing a topic about MS. To me is a hidden disease!
Thank you for your story heyhey. I live near chicago also and am hoping to do a clincal trial for stem cell bone marrow transplant. Are you RRMS or Secondary Progressive? I hear you have to be RRMS to get in the trial.
I want to walk and run again. I am too young to be this far.
I emailed you info if you did not have it already. It is a big step but it does sound like you want to do it. I knew I wanted to do it and had to do it. Getting excepted depends on your EDSS level also. The staff and Doctors treat you great when going through it. I also made a good friend while going through it that had MS. So it nice to have someone you can talk to. Let me know how things go?
My significant other, John will be undergoing a stem cell transplant in 2 weeks to get rid of recurring lymphoma. We are confident this will finally get rid of the cancer once and for all. It's good to know that you are doing so well after your transplant. I wish you continued good health!
Well thank you for such kind words! I know I was on the same floor that I did my transplant were they were doing it for Lymphoma. I wish him all the best and your family. It is so great that he has people that love him and are supporting him through this. I think that is a true key of healing and also never giving up hope!!