rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
I hope this is not a question that has been asked and answered repeatedly.... Some of you may remember that I was going down to Johns Hopkins for evaluation. I still do not have an official diagnosis, but, the neurologist said that I appear to have bulbar palsy, and the report she sent to me, as well as to my local doctors, had Progressive Bulbar Palsy in the "diagnosis" field of the report. I was reading through what she wrote, and there were things that she found that I was not aware of. One of those is the "brisk" reflex ~ 3 plus ~ (in my jaw and lower extremities) I would have thought, before all of this started, that "brisk" would equal "good" but I guess not (?) She also said my tongue had tremor and fasciculations, (I didn't realize I had the fasciculations, had convinced myself it was just tremor). There was much more in the report, i.e. tongue atrophy, weakness, blah blah (sigh).... I also had the modified barium swallow performed a couple of weeks ago now, and it turned up more problems than I realized I had.
.... Its such a long road, as all that are reading this already know, and now, even though the news is not good, in a way it is reassuring just to be dealing with specialists that understand what to look for, and what they are seeing. It sounds like I have one more test to complete, a "coned down" mri of my brain stem. This is not yet scheduled, but hopefully will be by early next week...
I remember at least one person here on the forum was interested to know if I liked doctor Sumner, and the answer is a very emphatic yes!
One more thing, Has anyone else had trouble banging their elbows? I keep hitting my elbow (mostly the right one) into things, the door jamb when I walk through, even opening the car door sometimes. At any other time in my life, I'd just chalk it up to being clumsy or whatever, but now I wonder if its connected. My right hand does get the vibrations in it, occasionally sometimes my left too, but not so much, only if I'm super stressed..
Anyway, if anyone understands the importance of brisk reflexes, I'd really appreciate the response. take care, Diane
.... Its such a long road, as all that are reading this already know, and now, even though the news is not good, in a way it is reassuring just to be dealing with specialists that understand what to look for, and what they are seeing. It sounds like I have one more test to complete, a "coned down" mri of my brain stem. This is not yet scheduled, but hopefully will be by early next week...
I remember at least one person here on the forum was interested to know if I liked doctor Sumner, and the answer is a very emphatic yes!
One more thing, Has anyone else had trouble banging their elbows? I keep hitting my elbow (mostly the right one) into things, the door jamb when I walk through, even opening the car door sometimes. At any other time in my life, I'd just chalk it up to being clumsy or whatever, but now I wonder if its connected. My right hand does get the vibrations in it, occasionally sometimes my left too, but not so much, only if I'm super stressed..
Anyway, if anyone understands the importance of brisk reflexes, I'd really appreciate the response. take care, Diane