So I finally had the MRI to investigate the loss of sensation and pain on the left side of my body and the other weird things. I receive end a call from my family doc who said there was a new lesion in my brain since last July. My Rheumy says no more biologics and he is calling it MS. A neurologist my family doc spoke to on the phone for 2-3 mins says it is the Remicade. Just stop the drug and all will be well. I am still having symptoms and now some with my right arm losing sensation.
I am freaked. Either MS or not I have more areas of demyelination in my brain since last July. My joints are nuts. My family doc says I need to decide whether to take the Remicade. To me it feels like a question of “would you like the red poison kook aid or the blue?” I am trying to do my own lit review/ research but am limited.
What have others found out about re these demyelination “instances” or their thoughts? I am very concerned and of course neither specialist will talk to each other and I can not see the neurologist til _______?(fill in the blank)
I'm glad that you are on the path to getting some answers. It sounds like stopping the Remicade might be the start of how to deal with this, and then see where it takes you. Keep doing your research on this. Can Remicade cause lesions? If your joints are in bad shape right now, is the Remicade even working?
I'm wondering if you may need a group approach. Is there a major University in your area, that uses this type of group approach? Or similar?
I'm sure you'll get more feedback on this. All I can do is send you supportive thoughts as you navigate through this.
So sorry to hear this Kirsten, I can understand why you are freaked out by it. Not that freaking out helps … but it is very worrying.
I can’t help you with your questions, although there might be someone here who can. I had the same thought as Stoney about going to a University center, except that I know that you live in the far far north. Is there a way to get referred to a specialist site where a team could address both the neurological issues and your PsA at one time? You’re well-connected in your medical community: what can you find out about this?
I would think there is a possibility of telemedicine. I can't help but wonder if you couldn't consult with Seenies center/ The new Locums coming in may have some good connections as well.
There is a big difference between Demylination disease caused by remicade and MS. Now it might be that the only way to tell is stop the remicade and see what happens. If it is demylination disease that does NOT mean you are done with biologics just done with remicade.
Not that it is a comfort and I don't mean it be some peverse form of pollyannas "Glad Game", but should it turn out to be MS, it too is treatable and often goes into long periods of remission. At least if they get the right disease, they can apply the right treatment....