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MS---so many questions???

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Posted 12/14/2013 8:01 PM (GMT -5)
So now I just had a neck MRI and it was negative. I am glad that there is no demyelination showing
there. But I have some questions now. The symptoms that I had a few months ago that started all this testing are gone for now. (The numbness, weakness, extreme fatigue,headaches) I do not feel great but about 80% better.

If those symptoms were because of the white spots seen on my brain scan and if they are said to be "old" why were they acting up now. What made them act up now? The doctor said they are not from MS--how can he tell? And is that for sure? Will they act up again and grow bigger or increase in number? Is there anything that can make them stay quiet?

Thanks so much!
Posted 12/15/2013 1:36 PM (GMT -5)
Ok. Let me give this a try. Remember I am not a doctor or any sort of medical expert. I don't know why your old lesions would act up and cause recent symptoms. But like many diseases, imflammation, infection from a recent pathogen could cause them to flare. In MS it is thought to be the results of the immune system going on a rampage.

I don't think a doctor can truly be sure. You might ask him, "What makes you sure that these lesions aren't MS?" His answer will either reassure you or send you for a second opinion.

If the lesions are caused by MS then there is a good chance lesions can get bigger and you can acquire more. If the lesions are caused by something else then I don't know.

With MS, there is no perfect treatment or cure. MS is progressive over time. The current treatments attempt to slow down this progression. The meds don't work for everyone. Everyone's MS is different. Some have a progressive course with disability, others experience slow progression and lead a near-normal life.
Posted 12/16/2013 11:13 PM (GMT -5)
For now I am just at a wait and see time. I will need to see the Neurologist if there are any flare-ups again and go back in 3-6 months and have another MRI. I am hoping so much that this was a one time episode and no more new white spots will be seen again.

I feel like I already went through so many years of being sick with SLE and so I should get extra credit! I do
wish things worked that way.

BTW, my dtr thinks this all m/b Lyme d. but I have had many blood tests for that, did you ever consider
that?

Thanks for all your answers.
Posted 12/17/2013 9:15 AM (GMT -5)
I don't have Lyme. I am sure of it. I have no history of recurrent fevers, joint pain, cycles of illness etc. I have had many blood tests. However I am going by clinical evidence that I don't have Lyme. I have always responded very positively to IV steroid treatment that is a hallmark of MS. Lyme disease does not respond well to steroid treatment. I have also responded favorably to my MS treatment.

If you suspect Lyme, please post on the Lyme board.
Posted 12/19/2013 5:06 PM (GMT -5)
Nor do I have Lyme - I have MS period...Gretchen hit all of the sympotms and reactions that separate Lyme from MS.  There are so many professional medical people out there that turn to Lyme disease because they do not kow the difference between MS and Lyme.  As a person with MS and they will tell ya. so with a lerson with Lyme..

Here is part of the problem with the medical profession - at least how it is in Canada. A Physican will take 8 hours of neurological training during his tenure of study.  Thats it.  Alot of doctors today when asked, only know of steriods as being a treatment for MS.

My doctor, who I do have tons of respect for, asks me each and everytime I see him - are you still on Copaxone?  How much longer will you be on it for?  My answers do not seem to stick with him as he asks me each and every time - because neurological things as such does not even register on this guys radar. 

Gary

Posted 12/19/2013 7:48 PM (GMT -5)
Gary!!!

That is so bizarre!!! And a bit funny. You need to say,"I'll be on Copaxone forever!!!! I LOVE daily shots!!!"

Oh by the way. Did you know copaxone is coming out with a 3 times a week formula?! I can't wait!
Posted 12/20/2013 6:44 AM (GMT -5)
Gretchen,

So glad you are back and will have Moderator status soon.  You are a true blessing to agree to volunteer to Moderate this forum and your knowledge base is outstanding.

Happy Holidays,

Kitt

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