Hi all, I am new to this Message Board, my name is Tanya. I was dx with MS in 1984 but the Dr's now think that my initial onset was at the age of 13 in 1974.
1984 was a busy year for me. My husband and I had just broken up in Sep. 1983, I had 2 small girls and the 2 year old had burned herself terribly at a play group. I was studying at University and I was so poor that I could not afford food for myself as well as my children - I ate their left overs and my weight dropped to 90 lbs. I am 6' tall. I had been dragging my right leg but thought that I had done myself an injury at bowling - a one time outing, I was dropping things and my 'sweet' mother said that I was showing signs of insanity.
I saw my GP and he said that even though he did not think that my loss of grip meant that I had a mental disorder, he did however recommend that I see a psychologist to talk through things.
A desperate call to Lifeline where a woman informed me that I had not been receiving my entitlements as a single mother. My money problems were solved. She organized a loan from a benevolent society to get a small car to transport myself and my girls around to get groceries and go to play group.
My mother was terribly abusive to me in every part of my life. Physical, psychological and emotional abuse from the earlist memories that I have, has been given to me as the reason I developed symtoms so young.
1984, I had some terrible pains behind my left eye and just after my exams [still trying to be super woman] I awoke with a fuzzy patch of vision in my left eye and went to the hospital to get it checked in outpatients. I left my girls with a friend's husband saying I will be back in 2 hours. 2 weeks later I was allowed home for a weekend and my girls had been picked up by my sister - they stayed with her for a month.
The Dr's at the hospital said that it was serious but would not tell me what was wrong, the day after getting to the hospital I was totally blind in my eye. I had blood tests, lumber puncture, VEP, CAT scan, and was started on adreno-cortico-trophic-hormone ACTH. My strength picked up amazingly but my sight did not return for over a year. Even though I felt strong I could not maintain this strength for more than a few minutes. This was the old fashioned way of carrying out a dx. Even though that Dr's felt 99% sure I had MS they were not going to tell me until the next exacerbation. I read a Dr's book with his permission and read that 95% of people presenting with Retro Bulbar Neurosis [you call it ON] go on to develop MS. I ran down the hall and said to the Dr "you have not been asking me the right questions" and went on to tell him of my other sx.
Now after that lengthy introduction - I have had MS dx for 25 years. I have had only 2 mild exacerbations, I take no 'MS' drugs. Last week I saw my neurologist for the first time in 7 years. I have had prednisone when exacerbating. I had a new marriage and a son when I was 26.
I changed my lifestyle dramatically. I stopped super heating my body by playing sports and hot baths. I take a number of vitamin supplements and following a fracture was dx with osteoporosis - from the length of time I was bedridden at the age of 13. I take vitamin D and calcium. I eat minimally and healthily and keep my weight down to a reasonable level. MS dx is not the end of your life, it is the start of a new life. I did not cognize that initially as I was terrified of a future where I could not care for myself or my children. However, it has all turned out OK.
From what you have written and my extensive knowledge of my disease of 25 years of interested personal study, I regret that your dx. will be MS. However, I might add that my MS life has been full and joyous, my children have grown to be wonderful adults, As frustrating and uncertain this disease can be, there are people who are worse off. I can't imagine my life any differently, it has been a happy one.
Good luck and strength to you all in the future. God bless.