Misdiagnosed after 10 years!!

So sorry and congratulations at the same time.  I too was mis-diagnosed. For me it was 20 years.  In that time I had numerous rounds of intervenous steriods.  I had a 10 day hospitialization with an intervenous medication (I can not recall the name) back in 94ish.  I was on the Betaseron trial and that made me very ill.  I spent a number of hears on Copaxone until I had a reaction then went on Avonex.  Thru the years I have been in PA with 2 different nuerologist that had ruled out everything and a Dr. at Thomas Jefferson University gave me the diagnosis.  I was then in FL for a number of years and went to an MS specialist that did an MRI yearly.  I was under the impression that my lesions were not increasing becuase I was on Interferon.  I then moved to CO and was treated for for 3-4 years by one nuerologist and was given a new one when the first one retired.  When my insurance decided they did not want to pay for Avonex anymore and would only cover the new generic version of Betaseron, I apealled becuase Betaseron had made me so sick years before.  Long story short, I was sent to a new MS specialist that determined that I was doing too well for having MS for 20 years and stated that my lesions did not look like typical MS lesions.  I immediately stopped the Avonex and saved $250 a month.  Over the years I have experienced extreme vertigo, exhaustion, problems with gait, sensation changes, tremors, cognitive impairment, migraines, rt. eye pain, intolerence to heat, pain spasms and muscle cramps.  All was caused by my "MS"  The only things that has chagned since I was undiagnosed was that I weaned myself off the use of a cane.  I believed that I became too dependent on it.  During the course of my diagnosis I had B12 deficiency; vitamin D defiency and hypothriodism.  I am releived that I do not have MS but not sure what is going on with my body.  Now Dr.'s tell me somethings are age (but they wern't in my 20's) and other things were caused by migraines and vitamin defiencies.  I get a massage monthly and see a chiroprator.  I try to excercise to my limits and do range of motion excersices.  I still experience spasms in my legs, back, hips etc but I just deal with them.  I am sick of "practicing" doctors.  When first diagnosed I was relieved that it wasn't ALS now I have settled for "it's just me" and it won't kill me.  Best of luck!

I started experiencing numbness in my arms and legs, tingling, and hot burung sensations down my spine. Most times it was my left side. Then i had eye pulling and man ddid it hurt.The left side of my face would go numb, or when i was driving my left arm would go completely numb and fall off the wheel. My doctor sent me for an MRI and it came up with 5-7 lesions. The neurologist that i went to sent mefor a lumbar puntcure and blood tests and said all tests came back fine. It has now been 38 days since my lumbar puntcture and i cannt get rid of the headache. Tingling sensation is back in my left arm and i fell up the stairs the other day when my leg felt as though it gave out. Neurologist says that i do not have MS or LYme and that the lesions are inflammed and that I suffer from migraines. Gave me tramadol and elavil and sent me home. So now what? It just doesnt make sense to me .