The neurologist at Johns Hopkins didn't have any better idea than the neurologists in Philly.
After a very thorough examine, the doctor here at Hopkins had nothing. I pushed hard for him to do more than simply offer some migraine medicine that might help with his headaches, dizziness, and double vision (all new since the end March) and he finally suggested that we could try getting seen by the Neuropsychology department. Both DH, the doctor, and the receptionist doubted we would be able to get an appointment any time soon, but going with the idea that it never hurts to ask, I called and begged, letting them no we're from out of state and took off both Thursday and Friday so pleeeeease could they see him. Suffice it to say that they scheduled him for a nine am appointment today.
Right now I'm sitting in the waiting room here trying to keep myself occupied and awake while I wait. We had a two hour interview with the doctor and two different students - very in-depth. Then they took DH away for two straight hours of all kinds of cognitive testing (memory, reaction time, word/picture recognition). We had a lunch break at 1 and now he's back in there yet again for another three hours of the same type of testing. If nothing else, we will have a ton of data when today is done.
DH's "relapses" of weakness over his entire left side have become constant - non-stop symptoms for over a month now. He has to use a cane when walking more than a few feet because his left leg gives out with every step. He is no longer able to lift his left arm above shoulder level, even with assistance from his right arm. His left hand now has tremors that may or may not be connected to usage. His left arm goes numb and tingly many times, often waking him from a sound sleep a few times a night. He has lost enough sensation in his left hand that he didn't realize that a bowl fresh from the microwave was piping hot until he switched it to his right hand. His head hurts constantly, ranging from a dull throb to sharp pain that forces him to lay down.
Our hope at this point is to get ANY idea on how to stop this from happening again. When we get home I'm going to push for him to start doing PT and OT yet again before he loses even more mobility in his left arm. Things are bad for him, and they're getting worse. When the doctor yesterday basically shrugged his shoulders in puzzlement over DH's condition, I just went numb. I can only pray that this appointment today helps us learn enough to make a difference, to stop this deterioration and turn it around.
Thanks for reading. I needed to share with friends and get more prayers going. We have to find out what is going on - I don't know how much more of this he or I can take!