Well, after another bout of mri's; now i get to wait; praying for them to find the answers; praying that the lesions that they now believe are there; actually show themselves. What kind of sick and demented person am I to wish for such a thing? Understand, that I DO NOT WANT ANY OF THIS; but I can't keep up with the limbo anymore. I am deteriorating at a steady rate and things are going from bad to worse. After reading Lisa's posts on sexual dysfunction and numbness; I knew to inform my neuro of the newer changes; which prompted this most recent round of images. Perennial numbness is a big deal (I guess given my current state of pending divorce I should see the "good" in this); unfortunately, it has moved to my urethra and now I am having issues with leakage. I am only 41 years old and I am humiliated by this; but understand I am not alone. I just purchased panty liners; luckily it is not a huge amount at this point. I would appreciate any ideas on this. I am also having problems with controlling my emotional response to things; aka pseudobulbar effect. My 7 year old daughter was a little freaked out that I was crying while reading her book to her about a little girl and a pony. I kept thinking, how beautiful it was that other people cared about her getting a pony; which made me cry...I am NOT prone to this behavior; but since I am now aware of PE; it explains some laughter fits I had last summer.
Anyway, the most disturbing thing going on (as if the rest of it isn't enough) is my left arm and chest pain. I started having pain in the left part of my chest; it started with my left arm shoulder area and radiates down to my elbow and hand. My left pinky and ring finger go completely numb and stay that way most of the time. My elbow hurts most of the time and I can get my "funny bone bumped reaction" to happen just by running my finger over it. When I lay down; my left arm will buzz and I have to prop it on a pillow to try to stop it from hurting. I can't lay on my left side; because this exacerbates the problem and adds my head to the tingling. My heart is healthy; so that is not a problem. I am ready for some medication; I can't keep up with this much longer without some kind of help. I have two more tests before my doc tries the steroids; but I'm still really scared about it.
Thanks everyone for allowing me to vent and for being so kind with your responses. This place is all I have. I really need to find a live group as well; but no luck yet.



Holly,
I wish that I could snap my fingers and make all of this resolve for you. So sorry to hear that things have gotten worse lately, but maybe that will end up being good. Can't wait to hear what your MRI report says and what the neuro also says afterwards. Nobody wants this disease, but it is nice having a name for it.
Also, I'm really glad that you had read about numbness and sexual dysfunction. Just knowing what the possibilities are help us to be proactive in our own care. So glad that I insisted upon writing about that topic with our producer who wasn't so sure it was appropriate.
Just so that you know. I have numbness which travels down my arm to my 4th and 5th fingers. The numbness stems from the lesions in my neck between the C4 and C6 level. Curious to see if you have any changes on your MRI in that same general area.
Hang in there and come vent here ANYTIME you need!!