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Did you start your med before it was "definite?"

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Posted 11/9/2006 7:37 PM (GMT 0)
So I a case of "probable MS" at this point... I see the MS specialist on Nov 21. I highly doubt she would say definite right now cause I have 5 brain lesions, positive LP, and numbness...I believe she would wait for second episode or more lesions... So did you start treatment when you were probable and and not definite?? Is it a good idea, or should I wait?? My next MRI to see if there is more activity is in Jan... Not too far off...Would I be better off waiting at least until then to start treatment?? I dont want to start treatment unless I have to.... I mean, injecting myself doesnt sound fun...Also, do you continute the injections for the rest of your life ??
Posted 11/9/2006 9:02 PM (GMT 0)
Hi confused gal,

I can't imagine why your doc would only think it's "probable" with all the postitive signs you have.  Most MS specialists feel that you should start on a treatment as soon as possible, even if it's just highly probable.  They may leave it up to you though. 

 

I don't enjoy the weekly injecions but I'm glad I'm able to have some form of medicine that seems to show great help in this fight.  Yes, at this point, the injections are taken indefinately.  Hopefully, by the time we are very old they will have a cure or at least a pill to take!  LOL!

 

I hope you have a good visit on the 21st, let us know how it goes. :-)

Posted 11/9/2006 9:05 PM (GMT 0)
They say starting treatment early is a good thing, even before a definiive dx of MS is made even. I started the day I was told I have probable MS. As of right now, yes the only medications for MS are injectables that you take until you have a more progressive form of MS. At that point the treatments aren't so nice... The C.R.A.B. forms are only effective in the RRMS stage.

Good news though! An oral medication that seems very promising, is in its last phase of trials before being placed on the market! You can check it out on nmss.org
Posted 11/9/2006 9:14 PM (GMT 0)
Hi,

Well, my neuro now has said its probable. But he said he is a stroke specialist, not MS, and the MS specialist could have a different opinion, which is why he said he is sending me to the specialist. I am just saying I am thinking that the specialist would also call it probable since most docs seem to want to wait for a second episode or more lesions...IN that case I dont know what I should do... My current neuro was telling me about the meds and stuff... I know everyone goes through limbo land...Hey, at least I know its "probable." I know people have tons of symptoms and they dont show up in their MRI or LP for years so at least I have that evidence...But I just want to know for sure..I think the macdonald criteria, as my current neuro said required "lesions in different time and space." He said mine are only on my brain and there would have to be more or something to be definite... But again specialist could say something different, unless she also follows only the macdonald critera.  

Posted 11/9/2006 9:24 PM (GMT 0)

Often doctors do wait for two distinct flares....but it may well be that the MS specialist will decide, based on your test results (both lesions on the MRI and also o-bands, combined with clinical signs) that there is more than enough evidence to label it "definite".  And it may well be that you've had a second..or more..episode, but haven't realized that, in your past.  The doctor should take a thorough medical history, if your current neuro hasn't done so.

Besides, the newest recommendations for the drugs all suggest that the earlier you start them the better, to try to ward off increased progression.  Just one lesion in the wrong place can lead to serious disability; why risk that, waiting for that second flare to appear?

You don't have to take the meds for life .. folks do stop them.  But if you stop them, you risk the progression increasing.  It's not like some meds -- that if you stop them, you'd do damage to yourself, or risk killing yourself, like would happen with insulin, or heart meds...but you do risk increased progression.

There are lots of oral meds being developed. Hopefully one of them will be found to be as good as the current meds, or better. Or even better yet, they'll find a cure for this disease, and we can all stop the meds altogether!

Posted 11/10/2006 12:39 AM (GMT 0)
Me, well i could have started meds over a yr ago, the Mayo clinic from the MRI films i took them one dated aug 05 and may 06. all of my mri's from july 05 up untill the may 06 mri stated 1 lesion, and the may one stated possible second flare. the mayo clinic put them side by side, and both lesions were on both sets of films. if the whoever was reading that, stated that initially i could have started meds. and some of my lasting symptoms, might not have been so severe. if i knew there were more than one then, i would have demanded to get on the meds. i would have insisted on it. i would rather start as soon as i could to prolong things and hopefully keep it in the sidelines before i got 5, 10 or more lesions.

my current neuro, stated that MSers are always getting new ones and some are decreasing. it is only when they are at a certing size or in an active flare that they will show up on the mri. he also explained to me that yes i only have 2 lesions and a neg lp but it doesnt not sway the dx. just because my last 2 lps were neg, and usually unless its attacked your cfs or in an active flare, is when it shows positive in the lp. he stated that if it was pos, the lp that the next one could be neg, and then positive again.

i understand your anxiety over having or giving yourself a shot, i am terrified, and usually passout even for a blood draw. so far, i have dont most of my injections myself, i do it everyday. i tried a few times with the auto injector, but that made me more nervous than doing it manually. if i had gotten a dr even that had said probable MS last yr i would have taking the meds right away.

once a lesions has caused a disability then you take the meds, its not going to take the disability away. if i can take this lil shot once aday and prevent a major disability or prolong it, then thats what im gonna do.

the choice is yours and yours alone, and you will make the best decision for you.
cyndi
Posted 11/14/2006 9:43 AM (GMT 0)
Hi confused gal,

I was given a probable diagnosis in 2000, then upon second opinion it was confirmed.  Anyway, I didn't want to accept the diagnosis.  I was angry, probably what many people feel at the time and I decided they were wrong.  I had 5 days of steroids to bring down the swelling and after that I researched alternative therapies.  I didn't want drugs as I had felt that drugs and toxicity is probably what got me in this state in the first place.  I would be happy to share with you what I did specifically if you like.  I can tell you that I changed my diet and my thinking.  I have done a lot of personal development work and one movie I have seen recently really spoke to me www.thesecret.tv it cemented many of my beliefs and also helped me to see things in a different way.  The other great thing I did was this past Feb - I found a really healthy cleanse www.endlessenergy.ca and I swear that if I had found this 6 years ago, I really feel that my road to recovery would have been much faster than it was.  I won't be on these posts much so will check back in a day or two if you would like more info. 

All the best.

If there is anything I can say here that I think might help is honestly visualize yourself as healthy, surround yourself with positive people and believe you will get better.  Don't be afraid of what will happen.  I lived like that for 3 years and what a weight was lifted when I stopped living like that.

Big hugs.

 

Posted 11/14/2006 5:25 PM (GMT 0)
Hi Courtney

THanks. Can I ask what led to the diagnosis?? What tests were positive etc? How were you diagnosed for sure? Did they do a second MRI and more lesions or did they just decide you had enough symptoms?

Posted 11/15/2006 12:32 AM (GMT 0)

Hi Confused girl,

Yes, about the diagnosis.  Over one week I became completely left side paralyzed, thought I was having a stroke.  Lost co-ordination and feeling.  Went for many tests, Cat scan, MRI - several lesions, then a battery of test with the neurologist.  I don't remember them all though i do remember goopy stuff being put on my body while they attached a whole bunch of wires and me up to a machine.  I think I did about 4 tests that day that weren't like regular MRI and basic things I had heard of.  Then a second opinion after all that.... then 3 years later I went to the MS clinic at UBC our university to get tested again as I thought it was a misdiagnosis as I had been fine for 3 years and I did a whole lot of tests, co-ordination, jumping around and finally a test with the opthamologist and I got 2 conflicting answers.  The specialist the reknown MS Doctor told me to basically stop pretending that I didn't have it because it would be a real slap in the face when I had a relapse and it would be hard for me to handle if I didn't accept it now and that in 5 years at max I would have a relapse cause people always do.  Then the next Dr. the eye doctor said he saw nothing wrong and for me to live my life like this never happened.  That was all I needed to hear.  Funny, it had to come from someone of authority but since then I have not been scared, I don't wake up in the mornings wondering if this will be the day I can't walk.  It is incredible.

Posted 11/18/2006 1:33 AM (GMT 0)
Hi ConfusedGal,

The technical term for what you have is called "clinically isolated syndrome." It means that you have had one episode suggestive of MS. A person with clinically isolated syndrome (CIS) converts to MS when they have a second event. It is not appropriate to call it "clinically definite MS" because this requires lesions that are disseminated in space and time. People with clinically isolated syndrome are at a very high risk of having that second event and developing MS. about 80% of CIS patients develop MS. There are basically 3 options you can go with. They all have their risks and benefits.

i) Start treatment right now. There have been studies that show starting CIS patients on the drugs can prevent the development of MS in the short term, delay the time until the second event, and possibly make the second attack milder should it occur. The downside is that once you have been treated with a MS drug, you get the MS label for life which means you will have life long insurance issues. Not all CIS patients develop MS so you may be unneccessarily taking the drug.

ii) Wait until you see the second MRI before starting treatment. The positive aspect of this strategy is that you ensure that the drug is really needed and the diagnosis is correct should new lesions appear. The downside is that you risk progression during interum.

iii) Some people choose to never go on the drugs. The rationale is that they are very expensive, high side-effect, cumbersome, and only have a very modest decrease in relapse rate. I read somewhere that about 40% of people with MS have a mild form of it and don't need the drugs. The problem is you never know what form of MS you have or what it's going to do. Also, some people do respond very favorably to them.

These are just my personal views on this. Whatever you decide, take some time to think about it. Also, take care of any insurance issues you have. Good luck and please try to get some symptom relief meds from your doc in the meantime.
Posted 11/22/2006 9:05 AM (GMT 0)
Never done a chat room...up late, depressed and stressed out and don't want o further bug my husband. Parents are actually being involved and supportive, but kinda freaking out with my emotions right now and just want me to pop and anitdepressant right now. I am thinking Lexapro might be a good starter for this week. 3 weeks ago legs got numb over night along with crotch and weekness in thighs, knees hios etc. and after a couple weeks of tests and tests....Dx is MS...although specialist doesn't want to label it that yet until another lesion forms and I have another flare up. It has been 3 weeks of being crippled and very uncomfortable in my legs non stop. Just did 5 days of IV solumedrol and now weaning off steroids with pred this week...and then what???...In a few weeks I go back to the specialist who i guess will give me some injectables....to treat MS?
I am scared and confused....30 years old with a 3 yr old active boy that I just want to play with and go back to being my old self last month. I thought times were tough with my marriage and hubby struggling with his career/finances and then this happens?! I used to say...at least I have my health....but that just failed me last month as I was trying to hobble around throwing my baby's first big #3 b-day party. I pulled it off and it was good, but this all wasn't the pinched nerve we though it was.
Any thoughts...anyone out there right now?
Posted 11/22/2006 9:31 AM (GMT 0)
just did the neurontin and steroids that the specialist told me to start last week...since 3 of the labs were "red flags" for MS.
Posted 11/22/2006 11:31 AM (GMT 0)
Hello, Sophie Rose...

Your post would get more attention if you'd start a new thread -- scroll to the top of the page where the name of the forum is, and look on the left side -- you'll see a box that says "new topic". Click on that, and a box will appear where you can start fresh.
The neurontin is supposed to help with pain; the steroids will perhaps ease the internal inflammation that is causing your legs problems. And yes, the injectables will treat the MS -- not cure it, but perhaps slow the progression of the disease, and if you do have flares (or exacerbations), may reduce their severity.

I hope your post gets seen by some of the others!
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