What to expect immediately after diagnosis?
Posted: Mon Oct 26, 2009 8:20 pm
My appointment is this Thursday. I'm assuming that I'll get the "thumbs up" for MS and I'm mentally and emotionally ready for that. Surprisingly
I've already made a list of questions that I have for the Doc if I receive the diagnosis. I'll list them below to see if anyone thinks there's something else I should ask. Something you wish you would've asked when you found out but your mind wasn't in the right place.
A couple of other questions I have, when someone gets the MS diagnosis, do they tell you what type you have? I know the majority when first diagnosed are told they have RR but I'm wondering if they can figure that out after just a few MRI's and other tests. Also, is there some Master List or something that your name gets put on when you're diagnosed? I'm wondering how all these people end up doing research trials or if it's something they search for and sign up for themselves.
Ok, here are my questions for the Doc. Let me know if I should add something. Thank you!
1. Could it be anything else?
2. Where do I stand on EDSS? Or does that not really matter now?
3. New oral treatment, FTY720, Novartis. Thoughts? (I may take this one off because I think I read somewhere that they're no longer offering it?)
4. Do I need to start having regular (or twice yearly) MRI's? Brain & Spine?
5. CCSVI. Thoughts?
6. Is there a common place, either on the brain or spine, for MS lesions to be?
7. I've read that stress is no good for MS. True?
8. I know there is no cure, yet. So am I gradually going to get worse?
9. Exercise and healthy eating, my current course of action. Should I see a physical therapist and nutritonist?
Right now, I have made no decision on meds or treatment other then getting myself as physically healthy as possible. I definitely won't make a decision on Thursday if I do get the diagnosis.
Sorry for typing so much, I'm almost done.
At my last appointment my Doc said that if I had one more incident of having symptoms for more than 24 hours then he would have no problem handing down the diagnosis.
I don't know if I'm just noticing stuff more now or if I'm losing my mind. My husband has noticed it more too but I lose my words many times through the day. I'll be talking about something and have to pause for a few seconds while my mind remembers what that thing is called, my mind processes it, and it comes out of my mouth.
Additionally, for the past 3 weeks (and it's probably been longer but like I said, I'm just paying better attention now) I hear humming/buzzing. The best way I can describe it is if you're at a concert or in a club or anywhere that's been playing loud music for a while, when you walk out, you know how you can still kinda hear the 'music' in your ears? It's kind of like that. Or when you turn the TV on but mute the audio, then you stand by the TV and you can hear the humming and noise the TV makes just from being on? That sounds like it too. I can go through the day without noticing it unless I really concentrate on it but at night, the only time it's completely quiet in this house, I can hear it pretty clearly.
Ahhh...ok, I'm done. Thanks for reading, and helping.
I've already made a list of questions that I have for the Doc if I receive the diagnosis. I'll list them below to see if anyone thinks there's something else I should ask. Something you wish you would've asked when you found out but your mind wasn't in the right place.
A couple of other questions I have, when someone gets the MS diagnosis, do they tell you what type you have? I know the majority when first diagnosed are told they have RR but I'm wondering if they can figure that out after just a few MRI's and other tests. Also, is there some Master List or something that your name gets put on when you're diagnosed? I'm wondering how all these people end up doing research trials or if it's something they search for and sign up for themselves.
Ok, here are my questions for the Doc. Let me know if I should add something. Thank you!
1. Could it be anything else?
2. Where do I stand on EDSS? Or does that not really matter now?
3. New oral treatment, FTY720, Novartis. Thoughts? (I may take this one off because I think I read somewhere that they're no longer offering it?)
4. Do I need to start having regular (or twice yearly) MRI's? Brain & Spine?
5. CCSVI. Thoughts?
6. Is there a common place, either on the brain or spine, for MS lesions to be?
7. I've read that stress is no good for MS. True?
8. I know there is no cure, yet. So am I gradually going to get worse?
9. Exercise and healthy eating, my current course of action. Should I see a physical therapist and nutritonist?
Right now, I have made no decision on meds or treatment other then getting myself as physically healthy as possible. I definitely won't make a decision on Thursday if I do get the diagnosis.
Sorry for typing so much, I'm almost done.
At my last appointment my Doc said that if I had one more incident of having symptoms for more than 24 hours then he would have no problem handing down the diagnosis.
I don't know if I'm just noticing stuff more now or if I'm losing my mind. My husband has noticed it more too but I lose my words many times through the day. I'll be talking about something and have to pause for a few seconds while my mind remembers what that thing is called, my mind processes it, and it comes out of my mouth.
Additionally, for the past 3 weeks (and it's probably been longer but like I said, I'm just paying better attention now) I hear humming/buzzing. The best way I can describe it is if you're at a concert or in a club or anywhere that's been playing loud music for a while, when you walk out, you know how you can still kinda hear the 'music' in your ears? It's kind of like that. Or when you turn the TV on but mute the audio, then you stand by the TV and you can hear the humming and noise the TV makes just from being on? That sounds like it too. I can go through the day without noticing it unless I really concentrate on it but at night, the only time it's completely quiet in this house, I can hear it pretty clearly.
Ahhh...ok, I'm done. Thanks for reading, and helping.