About Me

  • Gender Male
  • Age 58
  • Relationship Married

My Story 4 Appreciate this

I was diagnosed when when i was 26 years old after losing vision in one eye. Since then I have experienced 3-4 additional incidents of blindness with vision thankfully returning months after to an acceptable level but not 100%. Other symptoms have included episodes of paresthesia to point of not being able to walk, massive cramping, dizziness, numbness, bad memory, and fatigue. When originally diagnosed I basically wanted to give up on it all but with the encouragement of my then boss who had been told he only had weeks to live a few years back I return to my everyday life. I refused to take medication since back then all that was available was shots of cortizone to alleviate the paresthesia. I started on Betaseron in 1994 just after FDA approval and a long battle with my health insurance. Back then it was only around $600 a month. Interesting my insurance is now being charged over $5,000 a month for the same medication. Symptoms have been rather manageable in the past 8-10 years or maybe I am just coping better. I try not to let MS get to me and try to live life as if I did not have it. Sometimes this gets back at me as I just overdo it but the heck with it I like living. I know there are different levels of MS and everyone is different but my recommendation to anyone with this disease is to keep living as you used to before you got diagnosed or take it to whatever level you can with your condition. My biggest challenge is that I was hoping to someday retire but if taking the medicine keeps me going I am going to have to work until I die to be able to pay for it. Update 02/2015 After 20 years to the day of taking Betaseron it turns out that it is no longer doing anything for me. Now starting on Copaxone. Not happy as so far injection site pain is much worse but dealing with it. Fair winds! Update 01/2016 Copaxone did not do well with me. The site reactions/pain were just unberable so on my 54th birthday I gave myself a gift. No more Copaxone! Mood improved. Pain stopped. Since then started on Tecfidera. A month later I can report that besides the Flushing (instant sunburn) which is appearing less and less and some minor stomach discomfort all is well.

Interests

Getting Involved Walk MS
Hobbies and other interestsSailing and regatta management.

My Activity