At that time the doctor said I may not ever be able to have children because cytoxan can cause ovarian failure.
Since then I have been able to graduate college with my degree in physical therapy, own my own home and start a business despite doctors telling me that because of the course of my disease I would be wheelchair bound by the time I was 28 ( I'm 31!!!)
12 years after I was told that I would not be able to have kids, I got married I the love of my life, Larry and we got pregnant!!!
I had no MS relapses during my pregnancy. 4 weeks before she was born I started having PKD (paryoxsomal kinesiogenic dyskinesia) seizure like activities that made the doctors do an emergency c-section. My daughter was born with the blood sugar of 18 and was in ICU for 5 days. I was in the hospital for the same time as they were trying to calm down the MS.
After coming home with Angie everything was perfect! She was perfect and I started back working from home.
I was nursing at home but supplementing with formula when necessary. I had been off and MS drugs for over 15 months (Because of timing of the chemotherapy and the pregnancy. About 3 months post partum I started not being able to produce much milk supply and MS syptoms starting coming back.
Sunday July 1 I started getting pins and needle sensation in my left hand, my left leg went out and I started getting the seizure like activity-PKD episodes. An ambulance rushed us to the nearest hospital in Va beach where we live. The doctors said they had never seen something like " this" before and they put me on some anti seizure medications and discharged me. I began getting worse at home and my Husband bravely drove me mom mom and my daughter 4.5 hrs in the pouring rain to Georgetown hospital so I could get treated by a specialist.
Here I am now at Georgetown hospital. They are doing a treatment called plasmaforesis where they take out my blood run it through a centrifuge and discard the white blood cells that are injurying me. This process can take 5 days to two weeks. I am also on extensive drugs to control the PKD which is extremely painful (Ativan, tegretol, klonopin, tegretol dilaudid and Bendedryl ). These drugs are supposed to slow down and stop the PKD episodes. I am unable to walk or transfer myself.
Right now my husband is unable to work until this has been all cleared up and I can walk and take care of my child again. I am asking for support in our time of need.
Our parents are great and have helped us in this situation. Even keeping my daughter while I'm undergoing trestment. However, I know I have friends and family that would want to be informed and be of help when we need it. Thank you!!
- Colette Winston
- sebastian rivera
- Pamela Dockins
- MaryBeth Franklin
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