How do you Know???

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theLight
New Member


Date Joined Dec 2006
Total Posts : 18
   Posted 12/27/2006 2:52 PM (GMT -6)   
As I've said before, I was diagnosed October 2005.  I haven't been back to have an MRI sice my diagnosis. 
How do you know when your having an exacerbation?
I haven't had substantial changes like the one that sent me to the doctor.  I know I need to have a second MRI done, but how do you guys know its time to go see the doctor???
 
Thanks for the advice in advance!!!

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/27/2006 4:54 PM (GMT -6)   
theLight said...
As I've said before, I was diagnosed October 2005.  I haven't been back to have an MRI sice my diagnosis. 
How do you know when your having an exacerbation?
I haven't had substantial changes like the one that sent me to the doctor.  I know I need to have a second MRI done, but how do you guys know its time to go see the doctor???
 
Thanks for the advice in advance!!!
Why do you think you need another MRI?  An MRI is a diagnostic tool...not a treatment tool. 
 
Are you on any medications for your MS?  One possible reason to have another MRI is to see if there are any substantial changes since you started your meds (like an increase in lesions). If you're not on any meds, then a reason for an MRI might be to see how quickly your MS is progressing, and maybe encourage you to get on a med. 
 
But if you're on one of the meds, and as you said, "haven't had any substantial changes like the one that sent (you) to the doctor", then you likely don't need another MRI.
 
When to see the doctor?  When (if) there are substantial changes; or if you're having difficulty with any of the meds you might be on; or when you need to get refills on your meds (if your primary care can't or won't do that for you); or once a year for a regular annual physical, at which time you can discuss all this with your primary care physician, and see if she recommends a visit to the neuro. 
 
Let us know more how you're doing, and why you are concerned, and maybe we can be more helpful. 
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


theLight
New Member


Date Joined Dec 2006
Total Posts : 18
   Posted 12/27/2006 6:57 PM (GMT -6)   

Not really as concerned as I am unaware.  I've been injecting Rebif since my diagnosis and have no major problems with it.

I was mainly just wondering how everyone handled their situation.  It seemed like my Dr wanted to see me once a month but had nothing much to say when I was there. I got a little irritated and tired of wasting my time in the doctors office on my day off.  Needless to say I haven't seen her in 6 months. 

You did answer my question though Uppity... I haven't had an MRI to judge my progression, but I really don't care to know at this point.  I will get the MRI first quarter of 2007 just to be able to judge if the meds are helping.

Thanks for the advice...

Chin up everybody!!!


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/27/2006 7:50 PM (GMT -6)   
theLight said...

Not really as concerned as I am unaware.  I've been injecting Rebif since my diagnosis and have no major problems with it.

I was mainly just wondering how everyone handled their situation.  It seemed like my Dr wanted to see me once a month but had nothing much to say when I was there. I got a little irritated and tired of wasting my time in the doctors office on my day off.  Needless to say I haven't seen her in 6 months. 

You did answer my question though Uppity... I haven't had an MRI to judge my progression, but I really don't care to know at this point.  I will get the MRI first quarter of 2007 just to be able to judge if the meds are helping.

Thanks for the advice...

Chin up everybody!!!

I'm glad the rebif seems to be "agreeing" with you.
I haven't seen a neuro in years (I've had MS since at least 1983). The last time I saw one was nearly 10 years ago, when we moved out of one area into a new community, and I got a new primary care physician.  She didn't doubt that I had MS, but did want me to see a neuro just to be examined and give her a sort of "base-line" -- "here's where she is now, and here's what I recommend..."  which essentially was, "She's on Betaseron; nothing much has changed; probably secondary-progressive, but then she's had MS for a long time, now..."
and that has been that.  I get a physical with my primary care doctor every year, she gives me a new script for the Betaseron and oxybutanin (the only meds I'm on, at present), and I wheel off  (I use a wheelchair).
I say the Betaseron is "working" primarily because: prior to when I started the Beta in 1993 or so, I was experiencing 2-3 exacerbations a year.  Since getting on it, I had just one, and then none.  As the neuro noted..there's been a slight decline, which has continued since I saw him..but no real exacerbations, so for an old lady (soon to be 60), I'm hanging in there.
I hope you continue to do well on the rebif.
 
 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


theLight
New Member


Date Joined Dec 2006
Total Posts : 18
   Posted 12/27/2006 8:46 PM (GMT -6)   

Seems that you have come to peace with the whole situation; I definitely think that's an admirable thing.  A lot of people in this forum feel they can turn to you for knowledge although "you are not a doctor and don't pretend to be one here." Again thats an admirable thing.

I suppose the reason I ask so many questions eyes is that I want to feel that I'm taking care of myself.  I know much is inevitable but I have hope that I will be able to walk for the rest of my life, especially since I was diagnosed early and started meds early.  It seems that it must be difficult to be confined to a wheelchair and for you I'm sorry for that.

Thanks for doing what you do here and for your advice!!!


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 12/27/2006 8:48 PM (GMT -6)   
An exacerbation is worsening of symptoms or appearance of new ones that last at least 24 hours. Especially for the newly diagnosed, at least a phone call to the doctor is a good idea so they can put it in your records and they can tell you if you need to be seen.
 
In the beginning you may need to see the doctor more often for monitoring and adding/adjustments of meds, but once you are doing well with all that you might need to go less often.
 
Right now, after six years, my husband sees the neuro every six months for monitoring.  At that time we discuss progression, whether meds need to be adjusted or added, and bring up any questions we might have at that time.  He also sees his gp every three months too for other health concerns, high blood pressure and cholesterol, and if anything comes up MS related in between neuro visits we bring it up at those appointments.  If you do choose to have more than one doctor taking care of you, just be sure they communicate and are on the same page with everything.
 
So happy to hear youre doing well on the Rebif, I wish you continued success with it :)  A second MRI is a good idea just to make sure it's doing what it's suppose to be doing, and after that it really depends on the neuro how often to do them or if they are necessary. 
 
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