Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I am new to this whole MS thing...well actually I am not really...My dad was diagnosed with MS about 15 year ago and it s been quit a struggle for him. He is a quadriplegic do to this disease. My dad has told me numerous times that he took on this disease so I would never had to. U can only imagine how I felt when they told me I too may have MS!!! My first thought went to...My poor dad!!!
Anyways...these last few week have been a whirlwind!!! altho its been a long time coming. I have had "issues" for years and in fact 3 year ago I went to my Dr due to muscle spasms and weakness in my legs. I told her my fear of getting MS and I was totally blown off (surprising???) Made many visit like this to only be told that I was fine. But man did my body tell me otherwise. But after being told ur fine for so long...u really start to wonder...am I crazy???? these past few weeks I will feel bits of relief cause i feel I can finally be true to my body and speak about my pains that I have been hiding. Then the next minute I will feel like i am crazy again...what if there really isn't anything wrong with me. I mean come on...Right??? I have many symptoms and two lesions (brain and c-spine) People just done have lesions for no reason...right??? I think I am just feeling overwhelmed and REALLY happy that I found this web site :)
Anyways...these last few week have been a whirlwind!!! altho its been a long time coming. I have had "issues" for years and in fact 3 year ago I went to my Dr due to muscle spasms and weakness in my legs. I told her my fear of getting MS and I was totally blown off (surprising???) Made many visit like this to only be told that I was fine. But man did my body tell me otherwise. But after being told ur fine for so long...u really start to wonder...am I crazy???? these past few weeks I will feel bits of relief cause i feel I can finally be true to my body and speak about my pains that I have been hiding. Then the next minute I will feel like i am crazy again...what if there really isn't anything wrong with me. I mean come on...Right??? I have many symptoms and two lesions (brain and c-spine) People just done have lesions for no reason...right??? I think I am just feeling overwhelmed and REALLY happy that I found this web site :)
But lesions in the cervical spine are much more likely to be from MS.
I'm glad you know there is an actual cause for the things your body was telling you. There was a new person here that had trouble being diagnosed with MS BECAUSE his mother had MS. The doc's kept telling him it was "sympathetic symptoms for his mother" they were not really true. FINALLY a doc ran an MRI & apologized on the spot to him. Meds effective at slowing MS by 30% were released about 16 years ago. A med wasreleased about 2004 the re-released in 2006 that was 60% effective and the oral drugs I hear soon to be released have that same type of efficiency. Last summer a drug in late stage testing had an 80% efficiency and was already being used to treat leukemia, long term safety use for MS had to be established and there have been multiple successful trials with stem cells that stopped & remylenated MS.....
So like the car commercial says..."This isn't your Fathers MS(IBM)!"
Do some searches on stem cells & MS there are multiple reports of 5 year success with stem cells.
I believe it is Alemtuzumab that had an 80% efficency at slowing MS and I am on Tysabri that has a 60% efficiency at slowing MS
At 80% efficiency articles report it is virtually stopped.
I'm sorry you dad has had such a rough time with MS, but truley he did make it better for you.
http://dailystrength.org/c/Multiple-Sclerosis-MS/forum/In-The-News/6468914-stem-cell-therapy
http://news.bbc.co.uk/2/hi/health/7680641.stm
There is a global stem cell trial going on right now. At first stem cells were used to treat people with advanced MS and the trial which has had global success is done with early stage, aggressive MS and wipes the MS out totally. I wish I could find a link to that trial. If I do I will post it.
but no MS meds or type of MS? What's the story there? Has your doctor discussed an MS medication with you yet?
I was close. I just got a computer mixed up with a car & I forgot the "anymore" . That was close. I think I'm ready to go car shopping and end up with a car and not a computer. :)
You aren't the only one who thought that they were crazy or was told there was nothing wrong with you when there really was! Unfortunately MS is so hard to diagnose, that most primary care physicians only know the textbook definition of MS and nothing more....
I was diagnosed about 7 months ago myself. I had a mixture of vindication and confusion when I heard my magic words when I was in the hospital. Doc K my neuro has been pretty good about it for the most part and Doc E my primary care physician has been excellent about listening to my cries of pain.... not that she wasn't before... but now that I have the diagnosis I think she is more sensitive to it...
I have also found that crazy is healthy! Take pride in being crazy! You will never be normal again.... besides, Normal is boring! Crazy is where its at!
Dont give up...Just keep pushing for answers...Someone will hear you.Good luck and GOD BLESS YOU.
To answer nnyl1 question...I am just starting the process of getting a diagnosis. I have seen the neurologist only once as of yet...got assessed...he said that it was most likely MS but before he could start treating he wanted to make sure it wasn't something else. In the mean time they put me on Baclofen & Nuerontin to try to help with the symptoms I am having now. But yes... he did talk to me about future drugs. Not very much though...my eyes got really big when he mentioned injections possibly every day...he said we would talk next time. We shall see! Thanks again!!! and I hope u all have a great day!!!
MS Sucks and Attitude is Everything