rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
Hi everyone, I went for my appointment down at Johns Hopkins yesterday. No real surprises. My neuro did not give me a diagnosis, but said that everything other than ALS had been ruled out. She said that the guidelines required for me to have the EMG from three different locations that showed denervation, and I had only the vocal cord one. I think also that this EMG was done at Mt Sinai in NYC rather than at Hopkins was somewhat of a factor with her.
She was somewhat puzzled as to why the doctor ~ who was there at at Hopkins ~ that did my tongue EMG back in April, did not insert the needle where the obvious signs of atrophy were, but rather at the back of my tongue. I said he'd told me it was because I'd bleed too much if he stuck me there, and she acted like she didn't feel that was very good reason, but kind of shrugged too, as there still needed to be a third EMG that showed the problems anyway. I asked if there was ever one done for the lips (my poor lower lip, sigh,) but she did not want to repeat any EMGs or try new places, but thought it better to wait a few months.
She said that for disability purposes that she was going to put down bulbar-variant ALS, but that she was not ready to say for sure that this is what I have. She said that although I'm feeling worse in some ways from when I saw her in mid-April, that from what she could observe objectively, the only dramatic change was with my lips, the lower lip in particular. My reflexes and everything else were pretty much the same as when she examined me before, so it wasn't moving as fast as sometimes it does.
She noted that I was interested in participating in any clinical trials that I qualified for, and sent us up to meet the Director of the ALS clinic while we were there. She said that she would still be my primary doctor, but that the ALS clinic is a team that will manage all the various supportive aspects of my care. She also is writing a prescription for blood work to make sure it is safe for me to take Riluzole, and the script for Riluzole.
We went up to the clinic when I finished with her, and it was just a real quick hello, they tested my breathing, explained a little more about what to expect at my clinic visits, and then said I could go. (they didn't have my records yet). This morning the coordinator for the ALS clinic called and scheduled my first visit for the end of September.
I'm just now re-reading what I wrote here, and, I know its probably just not that interesting to many that have already gone this route, but I'm hoping to help those that are just starting out, to give an idea as to one way that the process may go for them too.
take care
She was somewhat puzzled as to why the doctor ~ who was there at at Hopkins ~ that did my tongue EMG back in April, did not insert the needle where the obvious signs of atrophy were, but rather at the back of my tongue. I said he'd told me it was because I'd bleed too much if he stuck me there, and she acted like she didn't feel that was very good reason, but kind of shrugged too, as there still needed to be a third EMG that showed the problems anyway. I asked if there was ever one done for the lips (my poor lower lip, sigh,) but she did not want to repeat any EMGs or try new places, but thought it better to wait a few months.
She said that for disability purposes that she was going to put down bulbar-variant ALS, but that she was not ready to say for sure that this is what I have. She said that although I'm feeling worse in some ways from when I saw her in mid-April, that from what she could observe objectively, the only dramatic change was with my lips, the lower lip in particular. My reflexes and everything else were pretty much the same as when she examined me before, so it wasn't moving as fast as sometimes it does.
She noted that I was interested in participating in any clinical trials that I qualified for, and sent us up to meet the Director of the ALS clinic while we were there. She said that she would still be my primary doctor, but that the ALS clinic is a team that will manage all the various supportive aspects of my care. She also is writing a prescription for blood work to make sure it is safe for me to take Riluzole, and the script for Riluzole.
We went up to the clinic when I finished with her, and it was just a real quick hello, they tested my breathing, explained a little more about what to expect at my clinic visits, and then said I could go. (they didn't have my records yet). This morning the coordinator for the ALS clinic called and scheduled my first visit for the end of September.
I'm just now re-reading what I wrote here, and, I know its probably just not that interesting to many that have already gone this route, but I'm hoping to help those that are just starting out, to give an idea as to one way that the process may go for them too.
take care