I'm only 31 and I'm tired of my doctor saying things like "you look great!" and blah blah blah when over the past 4 years I have gone from being a pro-am sponsored race car driver to being bed ridden the majority of the day. I'm lucky if I don't get carded when buying cigarettes or alcohol because it wasn't until after my daughter was born that people stopped asking me if I was 15-16 years old. Most people ask if I'm the daughter of the guy friends I'm out with who are only in their mid 30's. I never have felt like the different neurologists that I've seen treat me like I'm 31. I finally stopped seeing my first neuro when he said "just think of it this way, now you just have to live like a normal person" when I had asked about my reflexes and cognitive function returning enough so that I could continue driving race cars. It was the king of "but you don't look sick" statements for me.
I'm at the point where I don't leave the house because by the time we get into the grocery store, I'm about to ask my boyfriend if he'll put me in the cart and push me around. Let alone go anywhere by myself because I'm worried I'll be too tired or my legs will hurt too badly to be able to drive myself home.
How do I get a wheel chair? I would be paying for it myself since I don't have insurance but I assume this is something that I should talk to my neuro about wanting? Will he tell me no? I started seeing a pain therapist after I got tired of them not willing to try anything but anti-depressants and anti-convulsants for the pain that I was dealing with. They'd say things like "if we try anything stronger, you'll have to be on it for the rest of your life".. Oh really?? That's different from any of the other medications because?? It's such a hard thing to ask him, I feel like it's worse than when I tried to bring up the problems in the bedroom with losing any kind of feeling and he just kind of stared at me. I'd mentioned viagara and how it was supposed to increase blood supply for even women and he kind of said something along the lines of "I think we have other issues that need to be address before we try something off label for such a minor thing". Oh, god forbid we use something "off label" to treat an MS symptom!!
Let me go check the medicine cabinet and see how many standard prescriptions for MS are being used "off label"!
That turned into a rant. Sorry about that. I just want a wheel chair. Just something I can get myself around in when my legs don't feel like they're going to work. I don't want to have to fall face first onto the floor when trying to keep up with my 6'4" boyfriend when we're walking through the airport like on the way home from Disney. That was great. Thankfully he's used to it now and caught me about 6" from breaking my fall with my nose.
Thanks in advance for any insight!