Hello out there .. been a long time since posting .. saw many reposes to a questions referencing Marinol & Sativex .. thanks to all who did reply !
Having my MS now 9 years and experiencing new issues it was finally nice to hook up with a Neurologist that was able to expand on my MS .. back in July of 2006 , I had written about having had a full body MRI after the neuro there in NM half-heartedly gave me a thumbs up on the regular MRI ..
She had made a statement that stuck with me for these 4 years .. that a lesion had grown "deeper" into the gray matter of my brain .. this was nothing to worry about .. my gut said different .. but I had no way of knowing why ..
Fast forward to FL and my second full blown relapse .. as I had reconnected with my previous rheumotolgist , who understood MS better than my past neuro, we discussed that the new symptoms from 2006 needed to be addressed by a better neurologist ..
She knew that the destruction of gray matter was important .. so I went to the very first neuro I had met in 2000 .. and he was the neuro who ordered the spinal tap confirming my MS ..
We talked about the new issues .. he made me feel comfortable about what I was experiencing both physically and emotionally .. The relapse happened two weeks previous but he still ordered fresh MRI's PLUS a SPECTROSCOPY ..
On our follow-up visit , I brought my ex with me , as the neuro explained more about the gray matter as a concern than the lesions .. Correct me if I am wrong , but he said that BIG research hospitals now find that the destruction or atrophy to the gray matter is more important than lesions ..
My neuro explained that what damage had been done is what it is , he explained that now with the spectroscopy we will have a base point to begin anew ! That we should look at this as a new beginning .. my ex of course asked all the questions , and I was glad he was there ..
As I say this is new news to me .. as my ex and neuro said, "It is a new start" , as each year the spectroscopy will measure the loss which leads to my use of Copaxone .. I had hoped that I could get away with my yoga and healthcare diet and rest ..
Oh, I will still do all that , but now I will just add a new medication to the other "symptom" medications I am on .. new beginning , my ex asked about MS and how the course of the disease runs .. meaning it has been 9 years , this is where is was and now is , what can we expect and when ..
Weird, huh ? No, my neuro explained it in as positive a light as possible .. If one the Copaxone we can stop the progression and destruction , that I will more than likely stay where I am now .. that MS does the most damage within the last 5-10 years .. huh ?
He explained it further .. the first years, 5-10, you are bound to get your "label" .. For me , relapsing-remitting ... the nest 5- 10 are crucial for me .. he said .. as the atrophy now is where it all lays .. so if we can stop or slow , then whatever issues I am facing will be less harsh when having a relapse ..
AGSerra,
Welcome back!! I really thought that I had left a comment here, but must have dreamt it sometime in the past week. My sincere apologies.
Sounds great that you are meeting with a different neurologist who is being a bit more aggressive with treatment and more thorough with monitoring how the disease is progressing. I've heard the same thing about brain atrophy being more important than lesions. Your doctor is on top of things.
Please don't be too fearful of copaxone. It was a medication I used when I was first diagnosed (which was over five years after my first really BIG attack). We didn't want to delay treatment any longer.
The hope with treatment is that further damage may be prevented, delayed, or lessened. Each of those things sounds good. But like you say, of course keep up with the physical activity (stretching and exercise) and healthy diet. These help to keep your body healthy as well.
Sorry that you have experienced another big relapse. Have you recovered from it? How are you feeling? Hope you are having a great holiday season. Thanks for catching us up on how you're doing.
Lisa - thank you for reading my post and YES , it was a much more rapid recovery thanks to sheer stregth and knowledge .. previous relapse left weaker vision and right foot drop ..
From that I learned eye movement excersizes and did extra muscle work on my foot .. so this round it was very similar .. weaker vision and left foot turned inward ..
But with excersize once again it is minimal .. at some point the discussion of shots to my optic nerve may have to be but I am doing my best to excersize the muscle w/o making myself too dizzy .. lol ..
Indeed my neuro , who was the 1st I had in Naples and who ran the spinal tap has evolved and become very proactive in this field along with other brain disorders .. Dr. Michael Novak , 10 years ago was mostly orthopedic .. it was only natural for me to seek him out and ask about his involvment with MS .
I am pleased and am sure that copaxone will do it's job for me . I appreciate your view on this drug as well as many of my other friends I have made along this journey , about Copaxone .
I so hope you and all who visit here , have a very Merry Christmas and /or holiday season ... much peace in our hearts, much love in our souls and as long as we keep a smile in our hearts for all that is positive in our lives , we can survive anything .. Adrian