posted on September 27, 2000 08:52:44 AM new
I received a phone call this a.m. from my father-in-law telling me that he heard a news report about a new drug for Multiple Sclerosis - particularly effective for early stages which is where I'm at. He said it was tested for a short time and has proven to actually stop the disease in so many cases that it has recently been made available to the public ahead of schedule.
He couldn't remember the name of it though and I can't seem to find information on the web. I checked WebM.D. but it's such a huge site I haven't been able to narrow it down without the name of the drug. I called my neurologist but haven't received a return call yet.
I'm being a little impatient here - but since I know that there are other posters here in the same boat that I'm in - I wonder if any of you have heard of the new drug or tried it?
posted on September 27, 2000 09:05:08 AM new
I'm not sure I've read about any "new" treatments, but there is always new info on the MS Support Newsgroup I read.
Do you use newsgroups? The name of the group is alt.support.mult-sclerosis
There are many knowledgable folks there who keep up on all the latest in MS news.
If you use Outlook Express, and would like info on how to subscribe to this newsgroup, post back and let me know.
posted on September 27, 2000 09:10:57 AM new
Yes, I also saw it on the news. I'm sorry I don't remember the name. But, it's true and I sure hope it will help you and others with M.S.
posted on September 27, 2000 09:42:03 AM newMeya Thanks for that link. It gave me the info I needed - but so depressing. I'm one of those that hasn't been given a definite diagnosis.
I find the hardest part of this illness is not knowing for sure what I'm dealing with. I've had every test in the world - researched the web- read books - all have left me with more questions than answers. The doctors are full of "we thinks" and "it looks like it could be."
I guess I was having a moment of being stupid - thinking that I could take the drug and if it cured me - then I can stop thinking about this.
posted on September 27, 2000 09:54:22 AM newmybiddness, how long have you been on your search for a diagnosis? It might interest you to know that the average length of time to get from the first symptom to a positive diagnosis is between 6-7 years for most patients.
I can trace my vertigo back at least 11 years, but didn't have my first MRI until 3 1/2 years ago. That one showed nothing, but another MRI 1 1/2 years ago showed "bright white spots".
I am one of the lucky ones, most of my symptoms are mild and invisable. My biggest current complaint is "cotton for brains" and total hyper-sensitivity to noise and sensory input. I have, as my children are so fond of saying, the hearing of a dog. My oldest son says that I can hear blinking lights.
I spent the better part of yesterday with ear plugs in, because the neighbors down the road were having a tree trimmed. The sound drove me right up the wall. I have no ability to tune anything out, I hear everything that goes on around me.
posted on September 27, 2000 10:50:23 AM new
Okay I read the article and maybe I'm missing something here. That would not be unusual .
If in fact like the article says "Although Avonex is generally well tolerated, with no known long-term side effects, some patients get mild flu-like symptoms for about 12 hours after it's injected. "
What is the harm in trying it? I myself don't put drugs in my body unless I'm absolutly sure I need it. But then I don't have MS.
If they did the tests on people who showed "M.S. like signs" and the results were dramatic I don't get the wait and see attitude.
If it were me I would go to the doctor armed with this article and any other I could get my hands on and start asking questions.
I had to do the same thing a few years ago when I had thyroid problems. It took me two months to convince him to do the stupid test and guess what ? I had thyroid problems.
I know nothing about medicine but when my body starts screaming at me I get myself educated real fast.
I hope that this drug can work for you. Anything that improves the quality of life a person leads should at least be considered.
posted on September 27, 2000 03:32:05 PM new
Sorry for my delay - I got a call and had to leave unexpectedly.
My initial diagnosis was about two years ago. The MRI was done immediately and did show the bright white spots - but the spinal tap was inconclusive. I was told and it seems to be repeatedly confirmed that a definite diagnosis can take as much as ten years. In the meanwhile, I'm like you in that most of my symptoms are mild and not terribly life altering. Mostly confined to bouts of blurred and/or double vision - usually doesn't last long though. The worst part for me has been that I know I've lost a lot of information (yes, cotton brain) - seems to have effected both long and short term memory. I really don't mind forgetting what I'm looking in the fridge for - not a biggie to me. But, I do mind a lot not remembering books or events of personal interest or study to me. That has probably been the toughest adjustment for me to make. Fatique is occasionally a problem - but usually not debilitating. So, I'd say overall, my symptoms are frustrating but mild.
I also have the kind of super sonic hearing you described. I use it to my advantage whenever I can - but it does keep me from being able to go to movie theatres - even ear plugs can't make that bearable. But, I like the advantages of hearing stuff no one else hears - have even had some fun with it.
Calamity Thanks for asking about the hubby - he's still struggling with getting the meds adjusted so that his blood pressure, etc. go down enough for the surgery. He finally took my advice - (I nagged & nagged) and got a new doctor that seems to be interested in getting him past this. The other one was "too busy"... I could wring that docs neck, but that's another story. It looks like he'll have the surgery within the next week - I hope.
Tegan I'm going to talk to my doc about this med, but she's extremely cautious - and in a way I appreciate that. It's been almost a year since my last test - so, she'll probably start there. Still, I'd like to know what she thinks about it.
I have no ability to tune anything out, I hear everything that goes on around me.