Specific diagnostic criteria for beginning Copaxone

[misdiagnosed509]

I was dizzy and nauseas for a couple days. I went to my family GP who dx a virus and sent me home with diazepam.  

I then experienced vertigo and nausea; went to hospital.  I had a MRI, CAT and spinal fluid draw. MRI showed one brain stem lesion. CSF was negative. The treating neurologist diagnosed multiple sclerosis.

My life changed forever.  I was a healthy 40 yo, 5'6", 120 lbs, active, and non-smoker/drinker.

I had crossed diplopia, nausea, vertigo, couldn't walk, exotropia, gaze-evoked nystagmus. I received 5 days of IV  Solu-medsol steroid among other a multitude of other drugs.

I stayed in bed for 2 months except for doctor’s visits.  My left side went numb, depression, memory problems I slowly, very slowly regained my sight, balance and taste back.  25 days after ER hospital the neurologist said that the numbness on my left side was a second clinical event in time and space and dx me as clinically definite multiple sclerosis,I started Copaxone.  

Five days after first Copaxone shot, I developed SEVERE myoclonic head and arm tremors -- shudder like and serious depression and cognitive problems and emotional liability.

These dystonic head tremors were constant  (5x) causing my entire head and shoulders to shudder whenever I spoke.    I looked like Ozzy Osborne meets Dory the forgetful fish from Finding Emo.  

I gave myself Copaxone each day for four and a half years. I also tried BOTOX in my neck to try to control the tremors.  I felt ill, embarassed and fatigued everyday.  MRI each year show healing of single lesion and no additional lesions.

I saw a therapist and started yoga when I was finally able to drive.

March 2008, Dr. Michael Olek correctly diagnosis me with antiphospholid syndrome and having had a brainstem stroke 4.5 years ago. I never had multiple sclerosis.  I go off the Copaxone and 5 weeks later I have NO TREMOR. I physically improved each week also alleviating depression, fatigue, anxiety, and memory.  


I know diagnosing MS is difficult and neurologists make mistakes.  But what are the EXACT requirements for a definite diagnosis in 2003 and what is the EXACT diagnostic criteria for beginning Copaxone?  Should my neurologist have used the McDonald criteria for diagnosing MS on 2003?  I know today pharmaceutical companies say the sooner the better but what happens to a body that takes Copaxone for 4.5 years and never had MS?  Did I have experimental allergic encephalomyelitius?  Wasn't Copaxone developed to give mice MS?


There must be a strict specific requirement before a person should be on Copaxone.  Please help me.

[Erin0313]

I am sorry for your suffering & frustration. It took me a ten year journey around the US before finally getting my MS diagnosis 18 months ago. Every doctor found something but couldn't tie it together with a bow. One said antidepressants and therapy and another apologized and said that when I got bad enough it would be easy to diagnose.I guess I reached that point and all MS tests were positive so they started me on copaxone. I was doing well or atleast stable but a routine MRI showed 2 new lesions in the brain so they called it a failed treatment and took me off.  Now my symptoms are worse but my brain MRI is stable so they want to start testing for other diseases. I don't know if I am up for it and if all of my tests were positive I don't see why they want to look for more problems.
Good luck to you

[selmaS]

ALL drs are capable of makeing a mistake........they try to get it , but they r  only practicing.......in doing research I found how common it can be.
We have to educate ourselves and make sure we r getting the proper medical care.

Good luck
Godspeed
"selma"

[misdiagnosed509]

I stayed with the Copaxone because the neuro believed the tremor was caused by brainstem injury and he had never heard of the MS drugs causing harm............


I appreciate your innocence, as you say.....'As far as I can tell, even if at some point they decide I don't have MS, the Avonex won't hurt me'.  


Do some real research completed by researchers NOT related to drug companies.  Avonex has the potential to be VERY toxic, much more than Copaxone... and please be sure to keep up with your liver tests every 6 months....  Good luck to you!

[essdipity]

Please go over to the MS forum and look at the Health Pages there. There's a great deal of good info on all aspects of this, including the McDonald Criteria, revised in '05.

We would love to have you join our forum community. I think we could help you with what you're going through, and you could help us too. We have many discussions about MS mimics, and quite a few members who have been found to have something else that at first seemed to be MS. They have stayed around because we are a good, supportive group, the best on the Web.

I did Copaxone for a couple of months but gradually became very allergic to it. It's sure not for everyone. It does surprise me that you stayed with it so long. Now I'm on Avonex and adjusting well. As far as I can tell, even if at some point they decide I don't have MS, the Avonex won't hurt me.

Good luck to you in your future adjustment.

ess