What to expect immediately after diagnosis?

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What to expect immediately after diagnosis?

Postby LoveActually » 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. :)
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby Loobie » Tue Oct 27, 2009 7:04 am

Sounds like you're trying to really pre prepare. Just make sure it's all written down so you don't forget what you want to ask. There are a few questions on your list where there are no concrete answers. The EDSS question is probably premature because until you start having ambulation problems and complete functional system letdowns (bladder, etc), you won't even show up on it. I also seriously doubt, though I may be wrong, that he/she will know anything about CCSVI since it's so new. Also, the 'common' spots for them to be is also impossible to answer, though who knows, let us know what your doc says on that. As far as I know, they can be almost anywhere. Also about your gradually getting worse. That's absolutely impossible to answer. Some people who've had this stuff for 20 years are still basically fine. Other people are in a chair after one year. There's no way to predict, but there are markers that they will look for down the road as you present more stuff that they will "think" will make your case worse or better, but that is very inexact. Stress is bad period and seeing a physical therapist or nutritionist couldn't hurt. However, if you can still do a full workout of what you are currently doing, just keep it up. The key is cardio. So if you workout, make sure you are doing as much cardio. as possible. As far as that goes, it's all good though.

Just take care and live as healthy as you can and get good amounts of rest (probably easier said than done with the little one) whenever possible. It's scary, but the more educated you get, the more you can know what could possibly be coming. My advice is to do your best to slow down a little, get rid of all the bullshit in your life and exercise and eat right. You've already shown you understand that part of it. I know being in shape helped me early on.
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Postby patientx » Tue Oct 27, 2009 7:09 am

What to expect immediately after diagnosis? You'll get the proclamation form the doc and then...... nothing :)

This a facetious way of saying things won't immediately change. You will still feel (symptoms, etc.) the way you are now. It may hit home a little more. I don't remember where you are in the diagnostic process, but you've probably gathered from reading this board that an MS diagnosis can be pretty nebulous, since there's not one clear indicator. The first general neuro I saw said I only had one event, was suspicious for MS, but didn't meet the criteria yet. The MS specialist I saw for a 2nd opinion looked at my symptom list and determined there were 2 separate events, and I met the criteria for MS. Either way, it didn't make much difference, since both recommended starting medication. So, if you're doc doesn't give you an "official MS diagnosis," ask what the plan forward is.

The RR vs progressive question is a good one, but from what I understand the only way to tell is look back in time. But it's good asking the neuro how he would determine this. There's no registry for MS patients (though I did read recently that there is talk of trying to start a voluntary one). As for clinical trials, I made a point of searching them out. I believe others found that the doctor's office they went to was running trials, and they were offered.

It's a good list of questions. Here are my comments looking back (keep in mind, I've grown a little cynical of doctors, and neurologists in particular).

1. Good question, but I would phrase it as "what else have you considered and ruled out." Bob (Lyon) recently posted a link to an article by John Fleming which gives all the differential diagnosis for MS. Now, the list is pretty long, and you could be here til old age running all the tests, but it is a useful article. Also, is he says you have MS, ask him why he reached that conclusion. If not, ask him why not.

2. Good question, but many neuros don't do an EDSS assessment. Still worth asking.

3. First wait to see if and what treatment he recommends. Then I would ask about FTY and Cladribine. Both have completed trials and are in the process of being submitted for FDA approval.

4. Good question.

5. Don't be surprised if he's never heard of it. Can't hurt to ask, but don't emphasize that you heard about it on the internet. You'll get the eye roll for sure.

6, 7 & 8. Good questions.

9. I don't know too much about PT for MS, but I would think, unless you're having a specific problem (i.e. stiff leg), it's not really necessary. Diet is a good question, but many doctors discount the value of diet. I guess you'll have to get a feel for your particular doc. If he's receptive to things like nutrition, ask about vitamin D, fish oil, etc.

I can sympathize with noticing things more. I find myself stumbling over words sometimes, and recently I've had a heck of a time solving some fairly simple math problems. I'm just writing it off as being tired and carelessness.

Anyway, those are my suggestions. Use what you wish. I've only been at this for a year; I'm sure some of the more seasoned veterans will have good suggestions.
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Postby CRHInv » Tue Oct 27, 2009 7:22 am

I agree with Loobie, you are doing a great job of educating and preparing yourself.
Your symptoms sound a lot like mine. TV hum... that is the perfect description to the sound in my head. As we continue to look into ms being a vascular disease, I have changed the way I was first approaching this. Now, instead of exercising with a minimum of stress, I just go for it, and usually six times a week. When I started that approach my word finding and slurring improved pretty quickly. I had also had had a disturbing 'sea shell', clogged-up feeling in my head for a few months and that broke loose, literally, it broke loose and hasn't returned. I have also found that my Lhermitte sign is usually gone, what a relief, because that was so surprising and upsetting to me.
Be sure to let us know how things go on Thursday. I will be watching for your post.
Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby LoveActually » Tue Oct 27, 2009 9:29 am

Thank you everyone.

I've only visited this neuro once so I'm unsure about where he stands with natural treatments and other research that's going on with MS. However, the hospital he practices in is a 'teaching hospital' so I'm hoping that they're up to speed on the latest happenings in MS, we'll just have to see.

I'm sad to say, I don't exercise at all. Well, that's not true, I walk the dogs almost everyday. My problem is motivation, I have zero. And exercising is boring to me. My solution, I'm buying a treadmill. When we were stationed in NC, they had a day care area in the "Mom's Workout Room" and I would do my 45 minutes of cardio on the treadmill and be done for the day.

Thank you each for your input. :) I'll definitely report his findings on Thursday. And Lew, thanks for the great comment on my blog.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby Just_Me » Tue Oct 27, 2009 9:44 am

Post it all...I'm a few months behind you (literally since I did make an appt at Loma Linda) and I will soon have all the same questions as you. Only I haven't been able to get myself to start researching drugs and diets. Too much so its too overwhelming at the moment.

As for the losing your mind part...I have to constantly tell my kids to give me time to think when they want an instant reply to something. It takes longer for me to process info than it used to and I don't necessary lose words but use the wrong word (I'll be thinking - go brush your teeth and instead say go brush your hair.)

For the gym...is there a small womans gym near by? Contours or Curves or an independent? I joined a Contours that ended up changing names and I still hate to exercise but I see the same people all the time and I like that. It gets me out of the house and talking with people not related to me that don't need a thing from me!
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Postby LoveActually » Tue Oct 27, 2009 10:39 am

I'm glad you were able to get an appointment at Loma Linda. I hope you like it as much as I do. Of course, I'm coming from a neuro who, come to find out, has numerous complaints against her so my opinion may be a little off.

There is a Curves near me but my problem is my daughter. Most places don't have child care and by the time the hubs gets home it's too late. Then there's my son's soccer practices... maybe I'm just making excuses. LOL! Does Curves offer child care?
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby Just_Me » Tue Oct 27, 2009 12:03 pm

You'd have to call and see if Curves has child care. I think they are all run independently so some may. I think the 24-hour fitness does but I'd rather go to a smaller place. My 2 kids are in school so I don't have a problem with child care except during the summer & this year I had a neighborhood girl come over in the mornings.
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