My husband was diagnosed about 2 years ago with MS. We have switched medications 3 times because they all seemed to make him sick. We were finally on rebif and it seemed to be doing great. We went in for a recheck, and they scanned his neck and spine as well this time. We got some news which we didn't really expect. In just 2 years, his entire spinal cord is covered in lesions. The MD's said they have never seen this before especially in someone who is so young (23) and who hasn't had the disease for that long. They said they expected to see this maybe in someone who had had the disease for over 25 years or so. They were going to try to talk to some other specialist about seeing what our options may be. Just wondering if anybody else has ever had this problem? Also we were told that chemo is an option for treatment... has anybody ever heard of this??
-
-
Is this with an MS specialist? If so, then I think their opinion is a good one to trust. Mabey- if you are still feeling uneasy because of his age get a second opinion to be sure. I am so sorry to hear this.
THis disease is not very kind. HUGS and good thoughts
Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~ -
i would ask the doc why an immunosuppressant? but i didn't understand everything. spine lesions are a little more severe than brain lesions. i used betaseron until it stopped working for me. then my doc switched me to tysabri. standard crab drugs(Avonex, Rebif, Betaseron & Copaxone) are 30% effective, tysabri is 60% effective and I'm not certain what chemo(immune suppressants) are.
but i do know that tysabri has a low risk of a potentially fatal brain virus 1 in 1,000. the fda just this week release a change to the label that past use of an immune suppressant increases the risk of pml--so it seems to me the order for ms treatment has to be a crab drug then tysabri then an immune suppressant.
i would just ask the doc after he consults with a specialist would a chemo drug-a immunosuppresant- make him ineligible for one of the other treatments for ms trea tysabri
many people before they started tysasbri were given a choice between a chemo or tysabri.
i'm thinking if it is ms, he will be given this choice too. there is a group for tysabri. you might want to hang around there to get info on tysabri.
i'm sorry this has happened to your husband, being diagnosed with ms is upsetting enough without having problems with the treatment.xxxxxxxxxxxComment
-
Thanks to you both for your reply. We have thus far tried, Copaxone, Betaseron, and now on Rebif. I have just recently come upon Tysabri and it is really looking like a good option. I had heard about it before, but hadn't really known much about it. The specialist he is seeing is a neurologist... not an MS specialist. I am trying SO hard to get him into our MS center of excellence here. He is a veteran so his primary care insurance is through the VA. There referral process is SO incredibly long and they don't see the need to expedite anything. I don't know I guess in my opinion, time is not on our side right now. He went to the urologist today, and they are running some other tests this week but said he will most likely have to start intermittently catheterizing himself. I'm not sure how I feel about that, because the rate of infection when you do something like that is astronomically high... but then again I know we dont have much of a choice.Comment
-
i had to wear an indwelling foley catheter for a week, then they removed it and taught me how to self cath. they told me to do it 4x day, i thought it was much better than wearing an indwelling foley cather! but no one would tell me if it was forever or not? i thought i would be self cathing myself forever..but it turned out to be less than a year. now i still occasionally do it for comfort---i have the cath tubes and i know how to do it, why not? when it will make me more comfortable?
self cathing has a lower risk of infection than an indwelling cath tube---so it really is the better option, it's just tough to get over the idea. he will be fine with it--many people self cath for comfort--so don't get stressed about it.
and not self cathing can lead to repetitive UTI infections--the leading cause of death due to complications of ms. so it really is something to be taken seriously & not feared or be disgusted with it because it helps.
as his wife, offer to give him a hand with it.
might be fun for both of you.
xxxxxxxxxxxComment
-
My educated guess is that you are in OK based on trying to get him into the MS Center of Excellence in OKC. Am I right? I'm in Tulsa and am now being seen at Nuerological Associates of Tulsa. Can I ask who his neuro is? There is only one MS Specialist in Tulsa and that is Dr. Cattaneo. Is he the one his current neuro is consulting with? I would try and get an appt with Dr. Cattaneo so you guys can actually talk to him face-to-face as soon as possible but I know there is a waiting list...Rae RoyComment
-
-
Originally posted by RoyaleMSer View Post
We actually are in NC. There is an MS Center of Excellence here too! Sorry I couldnt be more help for you.Comment
-
Oops! LOL. I learn something new everyday!Rae RoyComment
-
Perhaps his condition could be used as an incentive to get him into the Center? Something to bring up with his neurologist.Courage doesn't always roar. Sometimes, it is the quiet voice at the end of the day that says, "I will try again tomorrow."Comment
Comment