Kim, I saw my neurologist last week, and HE brought up BG-12 to me. I was impressed with your knowledge and glad to know about the drug. Dr. Kaufman is the Charlotte, NC, metropolitan area's MS guru and has been heavily into MS research for decades. He knows Dr. Lava as well. Anyway, I wanted to let you know that he thinks that BG-12 might be available much earlier than originally anticipated. Further, he wants me to follow up in 6 months in anticipation of my starting BG-12! He said that he thinks that this might be the best MS drug available (for me, at least), and his eyes lit up unlike I've ever seen when he said it. Take care, LisaView Thread
21 hours ago LKintner replied to Neil S Lava, MD's response: I am facing the same decision regarding Avonex. My first MRI in 1999 when I was 33, showed nearly 20 lesions. I had presented to an ENT and subsequently a Neurologist with vertigo and fatigue six months prior to my going blind overnight in December, 1999. I reported what now I know to be classic MS symptoms by history. I passed all of the "field sobriety" tests and basically was dismissed by both physicians.
I was officially diagnosed in May 2000 and started Avonex. I used it religiously for 10 years. Then I got married and started to resent the day out my life every week that I missed. I have had no new symptoms and in 2011 had a stable MRI.
I took a shot a month ago and lost sleep, feeling as though I was going to die and subsequent after effects the following day. I have not used it since. I have an appointment with my neurologist in a couple of weeks but don't yet know what I'll decide. My main symptoms are fatigue, depression and cognitive fog. I can attest, however, that these have not been worse when on the Avonex as is sometimes described.
My gut intuition tells me that my MS has plateaued and that it probably won't worsen, other than due to age, just as it hasn't appreciably changed since my early 20's, which is when my neurologist and I think it first presented. I am now 46 and "look so good"- too good to be sick.
My neurologist has mentioned Glineya (sp?) as an alternative, but I don't like anything that might affect my eyes- don't want to touch it.
Vertigo is a common symptom with MS, thought it can be associated with a variety of other conditions, including allergies, which I have and blamed by vertigo on for years before going blind overnight in 1999 (see my post "to Avonex or not to Avonex, that is the question).
That condition in my eye is a separate disease, Optic Neuritis, which is an inflammation and subsequent damage to the Optic Nerve. It is very important to your sight as it sends the signals from your eye to the brain, allowing you to interpret and process what you are seeing.
Thirdly, what you are referring to is called the "MS Fog", which is a cognitive lapse, again resulting from your brain not processing properly or quickly enough.
Don't let it go!!! Find an MS Specialist and go! Run!
I say that because (see my post under "to Avonex or not to Avonex, that is the question), I, twelve years ago was presenting to physicians, even a neurologist, with varied and "vague" symptoms. I was checked out and turned away.
When I had optic neuritis six months later and went blind over night in my right eye, finally I got everyone's attention! My first MRI showed a large load of 20 lesions. They and my symptoms have not appreciably worsened since then. I regained most of my vision, but if I, at 33, had known to be more pro-active and trust my gut instincts, I might not have lost any vision at all and subsequent negative changes in my life.
MS is best caught EARLY, and neurologists see the "3 clinical events" differently. Those are the usual basis of diagnosis along with a "positive MRI" (meaning one showing lesions in the brain).
Trust yourself. I knew innately that something was wrong with me/ my body. I knew it was "in my head" and it was, literally!
Don't give up until you find answers, and don't be intimidated. YOU know better than anyone what is going on with YOU!
Thank you, Kim. I was aware of another/other oral medications coming down the pike. Question is how long will they be proven to be safe and effective and FDA approved. I appreciate your advising me as to the "BG-12"!View Thread
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