Yes, the tests took a long time to happen. It was scheduled in May and only just happened! That was so all could be done in one day since i live a few hours away from the hospital. That was very nice of them to consider for my sake.
I do plan to follow u'r advice and see if he can map out his plan of care for me. I'm hoping he's planning on me continueing to see him periodically as i've seen many posts here where the doc's simply say 'that's all i can do'. However; with this doc i suspect that won't be the case. I'm also taking my mri films and following some very good advice from shellypoo. I'm gonna ask him to look at them and see what he thinks. U see, my local neuro has never looked at them...he relied on the radiologists report that had been faxed to him...per that doc during a discussion of the mri report! I'm not about to let this go...tho it'd be nice to do...i simply intend to paddle along and try to navigate this with as much control as i can maintain.
On the symptoms and treatment...my local neuro dx me sometime back with restless leg symdrome (tho it should be called restless BODY symdrome!) and i'm using klonopin (as i HAVE to) for that and i'm also on cymbalta for the other junk, which is helping, but somehow also seems worse. Make sense? I guess i'm saying that the cymbalta helped to settle them down, but i've seen them worsen at times (flare??) while on it. It makes me wonder how much worse they'd all be if not on that. A long time ago i was dx with ibs and of course thought the doc was nuts. Now i suspect that may have been a beginning to this. Funny how u put pieces together long after u recieve those pieces. Thanks so much for following and helping me!! As i've always found, u'r a great support and help.
So nice to see u here and Welcome! I'm glad u decided to post. I'm goin to paste some of u'r comments here so i can address them and remember them as i do!
"I've had ever worsening symptoms similar to yours for years, including extreme fatigue and tingling and numbness in my arms, hands, legs, feet, face, and lower lip and chin. I've had severe headaches, cognitive problems such as slow word recall and substituting the wrong word totally, forgetfulness, and confusion. I've also had ringing in both ears, vision problems, and hot spots on my legs. about two months ago, I suddenly developed tremors, along with even more extreme fatigue, painful muscle spasms, slurred speech, and then noticed that I no longer sweat, even in the most extreme heat."
I too have HUGE probs with my memory...hence the copy/paste thing...and have seen it getting worse and worse in the last few months. The probs with my speech are that i can't get the word out or i think of the correct word and say another word. Lately i even say one of the words in the sentence, but in the wrong place. Gets really frustrating. Also, i'm with u on the jerking in the face! My lips, chin and cheeks and even eyes jump and jerk. The other day i sneared at a curb store clerk...but was actually only looking at her...my face did it without me!! The kind of headache i have is only in my right eye...the optic migraine eye! LOTS of pain in my legs..some days really bad, other days nothing at all. Wobbly legs...like jello. They feel soft in the knees. I too have the muscle spasms...i think. It feels like a tightness and hurts..and in my arms and hands it feels like it's pulling and hurts! Unfortunately i still sweat! haha
Seems as tho we are in the same boat as many here and other places...all these similar symptoms and no answers. Forutely i have been able to find two good neuro's...one local and one a few hours away who i'll be seeing next week. I'm really sorry u've had such a rotten experience with all this...as u said...u'r not alone. I feel u'r pain as well. I hope u'r pcp can get u some relief for u'r symptoms and u'll be much better soon. I"m glad u found us and posted...and hope to hear more from u in the future. I'd love to know how u'r pcp deals with all the info u've provided him/her. Take good care and thank u for posting!
Post Edited (rhondab) : 7/22/2006 8:57:47 AM (GMT-6)