17th March 2007
Hi Marsha and CBS,
I've already been working on my reply for the past 45 minutes and my computer shut down - that's happened once before with an IP glitch. AARRRGHHH!
So I'm dizzy and need to get something to eat and am going to capsulize the best I can. I'll come back and type more later. First, to answer your questions about my MS and Lyme...
I had my first indication of MS in '82 when I was 27. I had optic neuritis and was put on a week's worth of Prednisone which cleared up the neuritis but scared the heck out of me - I had my first taste of depression and had two kids under 2 years of age and began to read up on steroids. This was before home pc's so we spent some time in the local library and that was where I discovered that optic neuritis is a prime indication of possible MS. The neurologist I'd seen hadn't bothered to mention that. I then began to read all I could about MS and it was being discussed a lot. I knew people who had been diagnosed with it and I was a basket case but had a family to raise and my husband and I decided to concentrate on my staying healthy and not letting the possibility of it take over our lives.
It was another 10 years before I had another major symptom - optic neuritis again but this time I decided not to do the steroids and within several days it resolved on it's own. I saw another neurologist who did a spinal tap and MRI. She diagnosed me with MS (of course she did - she worked in the MS clinic in a big city hospital 100 miles away from our town).
By then I'd had some numbness and tingling but they always went away or were so minor I didn't let them bother me. By then I was working outside the home and had my own pc so was able to really do some research. I hated everything I read about all the drugs they were pushing and went to a naturopath who tried lots of different things, none of which did much for me. Then I began to have the dizziness problems. To make things even scarier, my husband was transferred in his job to near that big city but we were glad that there was more medical care to choose from.
I've had 4 MRI's, all of which showed those little pin-point white spots which I was told were active lesions. The big-city doctors tried to get me to go on whatever was being pushed at the time, beginning with the Beta drugs. I refused and decided not to be a guinea pig unless they came up with a treatment that might not be as bad as the MS itself. I had considered going on Avonex but at about this time, I was hearing about Lyme Disease and how it might imitate MS. I went to my first LD support meeting and everyone there thought I did indeed have Lyme. Then I began looking for someone to diagnose and treat me but found out that, as I’d been told at the LD support meeting, the medical community had decided that there is no LD on the west coast. At that point I began to go downhill and ended up going to California to a LLMD who diagnosed me and began treating me with abx. A year into treatment he put me on IV abx. and that lasted for a year when he felt that I hadn't responded well and I stopped, staying on a few oral abx. He also had a doctor from Seattle (a mere 2 1/2 hour drive for us) intern with him and I began seeing him rather than doing that awful trip to Cal. 4 times a year.
Now I've gotten off track and know I'm not going to be able to type much longer, but to answer a few more of your questions, the Cal. LLMD said he feels I have "lyme-induced" MS and was in favor of my going on one of the newest MS drugs - Copaxone, which pleased my neurologist. It's a daily injection and I'm just into my 5th month on it. Haven't noticed much change, good or bad. I haven't had a blood test for my muscles but the neurologist always says, except for the spasticity in my right foot and hand, I'm strong. He has me on Baclofen to help that and I know it'll take some time to see any improvement. At this point, I'm taking a break from all abx. and will see the Seattle LLMD in June. He's been very understanding about my confusion over what to do and I'm going to have another CD57 in June to try to get some more info on the Lyme. It's so hard to be in this place where I'm bombarded with completely differing opinions and the hardest is being told there's no Lyme here so I simply can't have it.
I'll stay with this thread and give you any further information I can. The neuro told me there might be something new on the horizon for MS in the next five years. Maybe in that time more will come out about Lyme, too.
Please, everyone reading this thread, listen to Marsha and know that we're all different and don't get scared that you might end up like me. If you're ambulatory, do your best to stay strong and never give up.
:angel: With prayers for your well-being,
Tronni
I've already been working on my reply for the past 45 minutes and my computer shut down - that's happened once before with an IP glitch. AARRRGHHH!
So I'm dizzy and need to get something to eat and am going to capsulize the best I can. I'll come back and type more later. First, to answer your questions about my MS and Lyme...
I had my first indication of MS in '82 when I was 27. I had optic neuritis and was put on a week's worth of Prednisone which cleared up the neuritis but scared the heck out of me - I had my first taste of depression and had two kids under 2 years of age and began to read up on steroids. This was before home pc's so we spent some time in the local library and that was where I discovered that optic neuritis is a prime indication of possible MS. The neurologist I'd seen hadn't bothered to mention that. I then began to read all I could about MS and it was being discussed a lot. I knew people who had been diagnosed with it and I was a basket case but had a family to raise and my husband and I decided to concentrate on my staying healthy and not letting the possibility of it take over our lives.
It was another 10 years before I had another major symptom - optic neuritis again but this time I decided not to do the steroids and within several days it resolved on it's own. I saw another neurologist who did a spinal tap and MRI. She diagnosed me with MS (of course she did - she worked in the MS clinic in a big city hospital 100 miles away from our town).
By then I'd had some numbness and tingling but they always went away or were so minor I didn't let them bother me. By then I was working outside the home and had my own pc so was able to really do some research. I hated everything I read about all the drugs they were pushing and went to a naturopath who tried lots of different things, none of which did much for me. Then I began to have the dizziness problems. To make things even scarier, my husband was transferred in his job to near that big city but we were glad that there was more medical care to choose from.
I've had 4 MRI's, all of which showed those little pin-point white spots which I was told were active lesions. The big-city doctors tried to get me to go on whatever was being pushed at the time, beginning with the Beta drugs. I refused and decided not to be a guinea pig unless they came up with a treatment that might not be as bad as the MS itself. I had considered going on Avonex but at about this time, I was hearing about Lyme Disease and how it might imitate MS. I went to my first LD support meeting and everyone there thought I did indeed have Lyme. Then I began looking for someone to diagnose and treat me but found out that, as I’d been told at the LD support meeting, the medical community had decided that there is no LD on the west coast. At that point I began to go downhill and ended up going to California to a LLMD who diagnosed me and began treating me with abx. A year into treatment he put me on IV abx. and that lasted for a year when he felt that I hadn't responded well and I stopped, staying on a few oral abx. He also had a doctor from Seattle (a mere 2 1/2 hour drive for us) intern with him and I began seeing him rather than doing that awful trip to Cal. 4 times a year.
Now I've gotten off track and know I'm not going to be able to type much longer, but to answer a few more of your questions, the Cal. LLMD said he feels I have "lyme-induced" MS and was in favor of my going on one of the newest MS drugs - Copaxone, which pleased my neurologist. It's a daily injection and I'm just into my 5th month on it. Haven't noticed much change, good or bad. I haven't had a blood test for my muscles but the neurologist always says, except for the spasticity in my right foot and hand, I'm strong. He has me on Baclofen to help that and I know it'll take some time to see any improvement. At this point, I'm taking a break from all abx. and will see the Seattle LLMD in June. He's been very understanding about my confusion over what to do and I'm going to have another CD57 in June to try to get some more info on the Lyme. It's so hard to be in this place where I'm bombarded with completely differing opinions and the hardest is being told there's no Lyme here so I simply can't have it.
I'll stay with this thread and give you any further information I can. The neuro told me there might be something new on the horizon for MS in the next five years. Maybe in that time more will come out about Lyme, too.
Please, everyone reading this thread, listen to Marsha and know that we're all different and don't get scared that you might end up like me. If you're ambulatory, do your best to stay strong and never give up.
:angel: With prayers for your well-being,
Tronni