I am overwhelmed and a big forum sounds even tougher to navigate. I appreciate someone responding though. The Doc's are great, we live in a rural area and there is limited medical care. Our closest neurologist is actually in another state, 1 hour drive, and our neuro at the MS center is an 8 hour drive. This is why the time has been short. They have treated us very well though. As it is a holoday weekend, it is not the best time for questions!! Also this has been moving so fast, even though I write everything down there is always more to ask!
I read somewhere that you once lost your vision. My husband had his first presentation when he woke with 6th cranial nerve palsy. His eye has started moving a bit but he still wears a patch. Sounds like this might resolve as it did with you. That would be great. Two weeks later he lost more than half his strength on the right side of his body. Quick flight to the city and 5 days of home solumedrol therapy, that is now better.
On another note, did you see my post about MRI lesions? He has 6 new active lesions in the last month. Is this typical? Two are on cervical spine at C2. He has white and grey matter lesions, corpus involvement and a new frontal lobe lesion.
Is his personality going to change? Is he really expected to have a short live with
Marburg's? I know there are no real answers when it comes to MS, but it seems surreal. He is active, healthy, walks 10 miles a day, is a professional with a master's degree, eats very well and all organic, and he was jhust 32 6 weeks ago. It just came out of nowhere. This is the guy who had a broken wrist and it took him 6 weeks to get an x-ray because he was "fine". Luckily he did not ignore these symptoms and was told within 48 hours of onset that it was probably MS. Glad we didn't have the tennis effect with diagnosing.
I dont know how to be the best person for him. This is hard for me too. We have been together 9 years and married 2. We were ready to start a family. I feel like 2 people got a diagnosis 6 weeks ago and I feel selfish for thinking I need support too or that this is my issue as well, after all I do not have MS. I could go on.....maybe I will check out the other forum but I think it will be too intimidating.