Jamiesmom32

[Jamiesmom32]

Do most ms patients get thier dinoses in 2 months ?
Been reading alot of your posts and there are so many people wondering if they have ms for a long time .   Is this a hard diesese to detect?  
Here is what I'm asking after my daughter had MRI  blood work. And a lumbar punter we had the results  and was told it was MS.    Total times about 2 months    So now I'm wondering if she needs a second opion . Also how do I find a m s specialist
Her Nero is starting her on Copaxone 40 mg with is taking a while to get her insurance to aprove
They ins. Wanted her to start on 20 mg first
Her nuro said no and prescribed the 40 again waiting now for approval . My daughter found shared salution and they are helping her faster than her ins
Also her nuro said there was no way she could tell her what kind of ms she has till after 50 years and they can look back and deside
Anyone advice would be appreciated ?

[Corriel]

Hi, I am a fortunate one who had only really one distinct symptom and although it is not typically found in MS, I was able to get things ruled out quickly.

I sped things up when all other testing was completed by agreeing to a spinal tap.

My total time to diagnosis was 6 months. A huge feat where I live because there are only 2 neuros and the wait list for them is typically 2 years.

I hope you get some answers soon,
Corrie

[PeninaD]

How old is your daughter?  Mine was 17/18 when the worst hit, but she probably was 'brewing' for 2 years before.

[immisceo]

Nope, not too uncommon as Laura states. A lot of people use this and other forums for support during the diagnostic process, so it makes sense that the majority of the stories you read indicate a protracted road to diagnosis. It's not a statistically representative sample, however. From the first moment anything was seemed wrong to the day I was diagnosed was 6 weeks. Clear cut cases can be just that - clear.

[Jamiesmom32]

Thanks so much for your reponnse . I'm a newbe here and wanted to role those thought around to get some  advice.    
Well explained Laura about the 20 vs 40 makes sence now!  It's a blessing ive found this fourm  
You see this special group of people fill in the blanks that you have after you leave the Nero and those questions that you never  knew to ask      Cheryl

[Lulu54]

Hi and welcome.  Two months is really not unusual for many of us- that's about how long it takes to get all the tests done and return for appts with the neurologists. If it is clearly MS, and often it is, this is fairly quick process. Mine was just about 2 months from start to firm diagnosis.  

If you are not comfortable with the diagnosis, then by all means ask to get a second opinion.  But from what you have written here, I must say I like this doctor.  They really can't know for sure what type of MS we have for a very long time.  They can 'guess' that it looks like RRMS vs PPMS,  but can't be sure until they watch the patterns.  

Even is it looks like RRMS for now, it is probably going to look like something several years from now.  Hpefully for your daughter it will look like a cure! I think it is too late for many of us, but surely in 50 years we will have a cure and treatment to restore lost myelin.

As for the 20 vs 40 copaxone dosage - what she is experiencing is the attempt by the insurance company to control costs.  The 20 and 40 costs the same right now, but Copaxone in the 20 mg dose is coming off patent protection in a short time and will be available as a generic drug for much less than the $50-60,000 a year they are charging right now.  The 40mg dosage is a new drug patent and has protection until 2030.

TEVA, the company  that makes Copaxone, says they will lose over 500 million dollars to the generic version.  With that explained, the insurance companies know they can save a lot of money by getting their people on the generic form as soon as it becomes available (this year) - it is hard for them to switch people from the 40mg copaxone back to the 20mg generic version, but doing the 20 to 20 switch is easier to enforce/required.  

I hope all of that rambling makes sense - I hope Shared Solutions and your doctor win out - although both variations test the same for efficacy, having to do that shot three times a week instead of daily is a huge difference.

best to you and your daughter,
Laura

[Joiedecour]

Hi there, sorry your daughter has been dx'd with ms. It sounds as if her doctors are pretty sure but if you are not confident, a 2nd opinion, with ms specialist, is never a bad idea. Some people are dx'd quickly, others, sometimes with atypical presentations or early ms, take longer - sometimes years to get any answers. Wishing you and your daughter well.