| Betaseron |
| Sitting in the small office at HUP (hospital of the University of Pennsylvania) I am told a little about what MS is and what to expect. I get little information, but I'll take what I can get. I am strangely relieved about hearing the diagnosis. I have been so full of self doubt and confusion over my illness. At least I know what I am fighting. It helps to know your enemy and I got to know mines as soon as I could. The National MS Society was an outstanding source for info, since I didn't have a computer at the time. They sent a giant package of pamphlets and magazines. CALL THEM NOW!!, well wait until you are finished on my site and signed the guest book..haha My doc told me about a new drug study called Copaxone. They think this new liquid will help slow down MS. I signed up for the study. I was also put on a waiting list for Betaseron. This drug was tested and worked well, but it was in very short supply. They had a lottery set up and when your number came up you could get the drug. The cost was unbelivable to me..$10,000 a year!!! Welcome to the world of incurable illness!! Things were bad over the next year or so. The one bright spot was the birth of my daughter ,Shaina. This blessing was marred by me collapsing during a tour of the maternity ward ,from the heat. I know everyone thought I was a nervous Dad, but it was my MS, triggered by heat. The rest of lamaze classes were attended by my wife and her sister. I couldn't get my panic attacks under control. I did make it through the birth by hanging on to an I V pole! The vertigo and staggering got worse and I spent a few nights crying on the floor. It was hard to deal with and I always hated being dizzy. Then the letter came in the mail! My number was in. Off to the pharmacy! Rite Aid is not the best pharmacy for new drugs. When I handed them my betaseron ID card (this proves you can get the drug) the guy thought it was a perscription plan!! After an hour, I quit and called my doctor to see who could fill the script. Of course, it wasn't a mega-chain drug store. It was a local 'MOM & POP' druggist who came to my rescue. Thank you PA state government, for having the wisdom to pay for my BETA. Now, I am not a foolish person and I know it takes time for any medicine to work, but after a week I felt GREAT. I could walk almost normal and I was not vomiting anymore. This is explained by THE POWER OF POSITIVE THINKING. A great thing, but also a trap used by the greedy to peddle useless cures. If I BELIEVE that a bee sting will cure me, then it will make my symptoms dissappear for at least a short time. The bee sting did NOT cure me, it just gave me hope. Hope is a great stress reducer. If stress is down and hope is up all is well in MS land. But hope deosn't cure MS either. There is no cure YET! Please don't fall for every silly theory that comes on the news or a talk show. These people are trying to get viewers, this is done by giving people what they want to hear or read. I think we should read everything and then research it thoroughly. Ask professionals that are unconnected with the cure. Personally, I trust the NMSS above all others. It's what they do..research! Now back to BETA. After one year, I was back to work. Not just work, but I rented a very large garage and went way into debt to buy tools and machinery for auto repair and welding. I worked 40 hours+ for almost 3 years without a relapse. Times were though, and the economy of our county is awful, so my business failed financially. Toward the end, my health went down fast, mostly due to stress. The MS symptoms returned with a vengence. The strange thing about this was, after I closed, all the symptoms faded again. Was it stress? Was it MS? I think it was Both! One thing is certain Betaseron was a lifesaver for me! It may not be your drug of choice, but you owe it to yourself and your family to get on one of the A B C drugs! They work, they work, they work! |
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| How my life is now |