new diagnosis?

[Terry114]

I was diagnosed in 2000 with MS. Had leg pain with a feeling of weakness and multiple lesions on MRI. Started betaseron and went to the Mayo clinic for a second opinion from the neurologist that was the director of the neurology dept.who's specialty was MS and had written numerous books on MS. He said I did not have MS and should not take any diease modifying medications. I was 42 and he said that the "spots" were normal aging. I did nothing for the MS and in December 2008 I woke up with double vision and paralysis of my 6th cranial nerve. MRI shows a new lesion that lit up and I now have lesions on my spinal cord with one that was positive with the gadolium. The Dr. said it was too bad that I had not been on medication, that I might have been able to avoid the double vision but I should go on it now. He was the original Dr. who diagnosed me and then backed off the diagnosis after the opinion from Mayo.  I don't trust any Dr. in the diagnosis and can't decide about taking rebif. Am I crazy or has someone else had a simular experience?

[uk2]

Oh hun,

This is why i think its so important to start people on DMD's even if there is no clinical results and just on sx as they do this is fibro and look what it could have saved you, still we dont know the furture and dont know what might of happened i guess you have tolet go and move on but i would have shouted that mayo clinic out but thats not the chrsitian thing to do, i guess it just shows you how much we know our bodies and what we have. and how sometimes we need to trust ourselves but we put such trust in drs which we should but they are just human and do get things wrong and i guess thats when we have to keep telling them know this is what i have and please help.

i am so glad you know now and you are getting treatment, my heart goes out to you though just because of what you have been through.

sam

[Deb61]

Terry, you can't go back and fix the past, but you can take a proactive stance from hear on out.  I'd research MS treatments, and get started on them now to prevent further attacks.  

My sister, as well as many people on this forum, has had the unfortunate experience with bad advice from a neuro.  My sister is unable to walk now, and is probably in the secondary progressive phase of MS because of waiting too long to get treatment.  Yes, she saw an MS specialist as well who told her that she didn't have MS.  Her brain lesions were hiding out in her brain stem and there were lots of them spotted when she was finally diagnosed.  Sometimes third, fourth, and fifth opinions are needed when dealing with something like this to find someone you can trust.  I am seeing her neurologist now, and traveling 100 miles to see him, because that's who I trust.

Deb

[Lulu54]

Terry,
I am so sorry to read this story here - you have definitely suffered because of some bad medical advice.  that you were on betaseron and the Mayo clinic doctor waived off the diagnosis is bad enough.  But then for there to be no followup (as I understand what you have written) for so long in between 2000 and when your latest relapse occured is inexcusable.  

Your doctor is possibly right that the vision problem may not have happened if you had been on a DMD, but there is also the possibility that it still would have happened.  The DMD's are no guarantee, but they offer the best hope to ward off new problems and slow relapses of existing symptoms.

Please do some research here and elsewhere about the benefits of the DMD's - and then pick one and get started.  Your lack of trust in the doctors who have seen you is sure understandable.  Don't let that keep you from getting the treatment you really need.

Come back soon and let us know how you are doing.
Lulu