Shoremom let me know of a recent series for Newly dx'd here in Jersey. I went to the session last night were the Neurologist who is the director of the MS Center spoke.
He was VERY well spoken and the session was geared toward beginners, but he started to get indepth. He could very easily put on a 2nd advanced session for those with a strong foundation. I listened to so many things that I learned here. Quix and others who provide us so much information ---it was all validated. The theories you shared with us - everything.
He even showed us a "real" brain with a lesion in addition to the lit up ones we are all so familiar with. He showed the corpus collosum(sp?) and described how it's rich in myelin and then he pointed out the lesion in it. They were obvious and oh, my, scary.
He went into congition, black holes (which he said correlated directly to disability,etc.) Nothing was without a source whether it his, or another.
I recommend all to attend a seminar no matter what you already know. I have to say he was so good and nothing like the 1st neuro I listened to at a seminar almost 2 yrs ago. Thank you Shoremom for letting me know.
Sadly, Shormom and I did not get a chance to meet. We planned on it, but she was busy and I didn't let her know soon enough that I was going. I've been busy too to say the least. The drive and late night was worth it though.
I''ll try to describe more with better details once I gather my thoughts. He brought up a med too that is suppose to assist with walking. It's not a cure or replacement for DMDs, but has proven to help people with walking and balance. It's called Fainpridine. I will verify the spelling of that shortly. I think the 3rd letter is not an "i" but I can't figure out what I wrote yet...lol
Shell I was intrigued by the medication so I googled it....Fampridine came up. here is the excerpt.
Fampridine-SR ("4-aminopyridine", "4-AP", “fampridine”) is an investigational oral, sustained-release formulation of 4-aminopyridine. In laboratory studies fampridine has been found to improve impulse conduction in nerve fibers in which the insulating layer, called myelin, has been damaged.
Clinical History of Fampridine-SR in SCI
In 2004, Acorda completed two Phase 3 clinical trials of Fampridine-SR in people with spinal cord injury (SCI). These studies did not reach statistical significance in their primary endpoints, reduction of spasticity (as measured by the Ashworth score) and improvement of participant's Subject Global Impression (SGI) rating.
Acorda recently completed a Phase 3 clinical study of Fampridine-SR to evaluate its safety and efficacy in improving walking ability in people with all types of MS. For a copy of the press release and study results, please click here.
To learn about Fampridine-SR’s mechanism of action click here.
This one was put on by the local chapter. If you join your local MS chapter, you should be made aware of when they are hosting them.
Also, the pharm reps were in attendance w/handouts and to answer questions, etc.
I'm trying to hit up the ones now where the Drs are directly associated with the center. This one was the director. It's a bit more difficult, because they are futher inbetween (like I said, the one I saw in the past, didn't impress me at all and wasn't associated w/the center).
Saveone! Thank you so much! I need to write more clearly lol. This should be available very soon and sounded to me to be very, very promising for those w/difficulty walking. It would be prescribed quite like things like Baclofen, etc.,
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