Just Diagnosed with MS....need advice.....

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bloooskies
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/4/2007 3:35 PM (GMT -6)   
Hi, I'm new here and just been diagnosed with MS a couple months ago.  I am a 45 year-old female, 1st attack fairly serious....starting with some hearing loss, tinnitus in left ear, numb down left neck and left arm, with progressive numbing from left foot to half-way up my left thigh over two weeks, also fairly extreme vertigo for over a month.  MRI's show 4 lesions (2 active, 2 not).    Neurologist treated me in hospital with IV steriod.  Six weeks later, hearing is back to normal and just mild tingling in left palm and left foot, on/off tingling in neck.
 
Neuro wants me to start copaxone ASAP.  I've read MacDonald criteria to diagnose MS, but since I have not had 2 separate attacks showing separation of lesions in time (but definitely in space, i.e. 4 lesions), I'm hesitant to start treatment.  Am I foolish to waite for that 2nd attack, neuro says it's a chance I should not take because it could be catastrophic. 
 
I guess I'm still in denial.....I think if I have that 2nd attack, then I will know for sure.  But since the doctor says it's a chance I should not take, that scares me.
 
Any comments would be appreciated.  I understand being diagnosed later in life can lead to a more active/progressive MS.  But I've also read some people can have a benign MS which only happens once. 
 
Thanks for your comments,
Blooos

jorie
New Member


Date Joined Dec 2006
Total Posts : 3
   Posted 1/4/2007 4:18 PM (GMT -6)   
HI 
l believe that the thinking now tends to be the sooner you start one of the dmds the more effective it will be. Based on  symptoms and test results it is not necessary to wait for another attack. lt is hard to know how the ms will affect you in the future. l was diagnosed 3 yrs ago 6 months after my 1st attack. l started rebif at that time.
lf you neurologist thinks you should start the copaxone without waiting to see what happens then he's probably sure you have ms or will in the near future. Wishing you the best whatever you decide.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/4/2007 6:14 PM (GMT -6)   
Hey Blooskies

Welcome to the board! I'm so sorry to hear of u'r recent diagnosis, but seriously think u should follow u'r doc's advice. Yes, as jori said, the sooner u start the better. Ur doc is justified in saying the next flare could be worse. It may not be as bad, but it could be. Best to follow docs advice on this and not risk it. The injections don't prevent flares, but help to reduce them and the intensity of them. That's not a guarantee either, but it's much better than not trying at all. Best wishes to u and i hope u'll ask all the questions u want. Again, welcome to the board!

rhonda

Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 1/4/2007 6:30 PM (GMT -6)   
Thursday p.m.
 
Good evening,
 
Not to be the smartest and wisest dog on the block....
 
But I agree with your neuro....and they say that the sooner you begin therapy, the better.
 
Your post sounds  like you have been searching for a reason  why NOT to begin therapy.
 
I think I'd put my treatment course in  the hands of the person who went to school for 12 years.
 
Great luck.  John yeah

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/4/2007 8:43 PM (GMT -6)   
Sounds like a chorus here...you're paying your neuro for his expertise...which is telling you that you have MS, and should start treatment sooner than later. I'd take his advice. I can speak from painful personal experience..you DON'T want to wait around for a second major potentially debilitating attack, but start now to slow the possibility of that occurring. Sounds to me like you've had separate attacks...the hearing, the numbness down your side, vertigo....

It's never pleasant to hear one has a chronic illness. But if there's a chance of treating it, why avoid that?
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 1/4/2007 9:14 PM (GMT -6)   
Hi Blooos,
 
   I'm sure that getting an MS diagnosis must be a scary ordeal for you and I'm sorry you are going through it.  Many doctors now are treating MS aggressively in the beginning rather than taking the wait and see approach.  Even in the early stages you can get irreversable damage so the sooner treatment is started the better off you'll be in the long run in terms of progression. 
 
   MS is very unpredictable, no one can say for sure if or when you'll have another attack or how this illness will effect you.  Why chance it though, when the meds might help you. 
 
   Best of luck, please feel free to post anytime!  And welcome to Healing Well.
 
Kimber
 
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bloooskies
New Member


Date Joined Jan 2007
Total Posts : 6
   Posted 1/5/2007 10:56 AM (GMT -6)   
Thank you everyone for your comments. I keep thinking I am having a bad dream and if I ignore it, it will go away. By starting medication I am admitting to the diagnosis. I worry about being on medication for the rest of my life, and wondering how much insurance will cover. Especially if I have not fully met the MacDonald's criteria, i.e. separation in time.

I trust my doctor's advice and believe in his expertise. But I was curious of others experience, i.e. could the second attack be debilitating....sounds like I got my answer from Upittycat's experience.

Thank you, bye for now.
Blooos

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/5/2007 12:22 PM (GMT -6)   
bloooskies said...
Thank you everyone for your comments. I keep thinking I am having a bad dream and if I ignore it, it will go away. By starting medication I am admitting to the diagnosis. I worry about being on medication for the rest of my life, and wondering how much insurance will cover. Especially if I have not fully met the MacDonald's criteria, i.e. separation in time.

I trust my doctor's advice and believe in his expertise. But I was curious of others experience, i.e. could the second attack be debilitating....sounds like I got my answer from Upittycat's experience.

Thank you, bye for now.
Blooos
Generally the insurance carrier does not look as far as whether you "meet the MacDonald criteria". If you have prescription coverage for other meds, they should cover one or more of the MS meds (sometimes a company will cover one but not another.)  Your doctor should simply be able to write the prescription, and could check with your company for you, or you could call and simply say, "I've been prescribed (x drug); what is your coverage?" and they should simply tell you.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/5/2007 12:28 PM (GMT -6)   

As for whether the second attack can be debilitating:

Note that this was 23 years ago.  I had been struggling for quite awhile with numbness and tingling in my legs, and weakness, particularly in my left leg and knee.  I couldn't stand for any length of time: even standing for a half hour at a file cabinet, filing away papers, was too difficult. And walking?  Maybe a couple of blocks, and then I'd have to sit down.  So -- looking back -- clearly some signs and symptoms of MS, but I didn't know it at the time.

Then my legs started collapsing under me.  I'd fall down, for no apparent reason (like, I didn't trip, wasn't knocked down...)  The BIG exacerbation was this: woke up one morning and realized I could not stand up out of bed -- my legs would not support me. And I'd lost color vision in one eye, and had a very weak arm. Not to mention poor bladder control.  By the time I got to the doctor and got to the hospital, I was unable to move from mid-torso to toes, lost color vision in both eyes, left eye wasn't tracking, left arm and hand were so weak I could not grasp anything, right arm was getting progressively weaker.

3 months later I was released from the hospital in a wheelchair.

Again -- this was 23 years ago.  The doctor didn't know what to do to treat a serious exacerbation (these days they put you on steroids asap). There weren't any of the disease-modifying drugs (Avonex, Betaseron, etc.) that are now available.  Had there been, had I started on one of them right away, I'm convinced I'd be a LOT less impaired than I am, now.  And I've seen folks newly diagnosed who were experiencing early symptoms, who have not had any further serious exacerbations.  So I'm a "believer" that these drugs do as they're purported to do, for many folks: slow the course and progression of the disease. A VERY good thing.

 


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

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