dealing with the neuro exam AFTER diagnosis

[doublevision1]

I understand why it's so important for your neuro to see you at your worst, or at least on a bad day, when in limbo and seeking a diagnosis.  It's too easy to be written off, if they don't see your symptoms, when tests like MRI and LP come back normal.

However, once you do finally get the dreaded diagnosis of MS, do you think it is still important for your neuro to see you on a bad day?  

I've become more aware that I would rather have my neuro seeing me when I'm functioning well, when I'm not fatigued and my eyes are aligned and my hand movements are coordinated and I'm not having dizziness.  I want to pass the neuro exam with flying colours.  It is really disturbing to me during the exam when I know I 'failed' one of the many little tests he puts me through.

I guess it is denial at work, that I am wanting to see in his report that all is well, rather than having my deficits documented and glaring back at me from the written page.  However, when I'm in my typically more objective frame of mind, I know that it's best to have the deficits documented, since it is so important to track whether or not my DMD appears to be working or if a more aggressive treatment is warranted.  Also I realize that if I go downhill, and off work again, I'm going to need to have the bad stuff documented to support a possible LTD claim down the road.  

I suppose I am just not wanting to face even the very idea of progression.  Guess I just need to get over it, right?

This is on my mind because I see my neuro next week, for the first time since my last big relapse in April.  I really want it to go well and be told that I am doing OK.  It was at that last appt when he started talking about Novantrone, and expressed concern about how aggressive my disease is for being so early after my diagnosis.  I really don't want to have that conversation again, at least for now.....

[Heather3418]

Nobody wants to get worse in their course of MS.  Nobody!  So your feelings on that are totally normal.  Of course you want your appointment to go well.  BUT...your Neuro DOES need to see you at your worst.  It's a great tool, along with follow up MRI's to check your progress with your DMD, (Disease Modifying Drug) for instance.  If you are having alot of flare up's your doctor also needs to know that.  A certain amount of flare-ups WILL happen for most, even with a DMD.  It's thought that the DMD prevents the relapses from being more severe and less often.  It is not a cure for MS, as you know.

If you are having too many flare-ups, your doctor may decide that your specific DMD is not working well for you.  The key to drug therapy is to reduce the severity and frequency of relapses.  You would want your doctor to be very up to date on this.  

It took me well over a year and possibly longer, before I got out of denial stage of having MS.  For other's it takes longer.  You seem to say that you are still in denial.  It's like greiving.  Greiving for what you have lost due to MS or for what your future holds.

There will come a day, when you adjust your life to the MS and do everything you can to live with this disease.

Some people may want to know if it's important to see your Neuro for every flare-up.  I say that if you are not having symptoms of Optic Neuritis and the flare does not contain alot of new symptoms, then seeing your doctor during a flare is not necessary.  I DO keep my doctor informed with a phone call, when I am in a flare though.  Best to keep these kinds of things in your medical record.  

Don't hide anything from your doctor.  Keep things documented.  It is vital to your future and your treatment of the MS.

Best Wishes,
Heather

[humming4u]

when ill, with Ms we need someone to watch over us,to see and judge things correctly.your still a bit new arn't you, maybe thats why it feels the way it does. lets think positive, that this next visit will be very different from your last,and if its not of the best news , that maybe this doc will take a moment to encourage you some also.
i will ask for this in prayer for you...til then,its okay to not feel like the bravest or strongest women in the world okay.....you should meet me, i'm a very big cry baby!
no need to get over, jsut get on with other things at the same time!!!
                                                                   best wishes too,
                                                                    humming4u