I was initially diagnosed with possible to probable MS in 1997. I had only 5 lesions back then and a neurogenic bladder. The first neurologist I had was VERY good, but he has since moved away. I went thru 4 other neurologists before ending up with my current one. Because the progressions slow & gradual, it was hard to pick up on the MRI's, though, I went from 5 to 9 to greater than 10 then 11. THe reports alone should have been enough I would think. But I had a bad staff infection in 2007, which aparently made the MS go into overdive, because my current neuro said he could see a sudden increase in damage since 2007. By the way, if you want you can write me at ***@****. I notice there is a character limitation writing this way.
Well, I kept passing all the tests too. All the evoked potentials, the spinal taps, you name it. If it hadnt been for my latest neurologist deciding to put my last 3 brain MRI's on different computers simultaneously ( which is how he finally noticed all the recent damage and that my brain has shrunk) no one would have made the diagnosis. Just hang in there and be persistant.
As far as my dx, it was a mixture of relief at having the validation and dread because none ot the current drugs work to slow this form down. My worst issure is the cognitive problems due to the brain shrinkage. I wonder how much worse it will getr, but its all in God's hands. I have some awesome kids and my son is buying a house so he can give me a place to live. Hopefully we will be moving by mid AUgust.
I hope you are well. I havent posted here in awhile. I dont know if I told you but I FINALLY got a definite diagnosis of PPMS. Good news bad news I guess. My Dr. said there is no treatment, just meds to help with symptoms. But, the Dx shld at least help with the disability case. How have you been doing?