DX without lesions!

[carlsgina886]

I saw someone say that according to this particular sight there had been no one dx with MS without presents of lesions.  Well you now have someone.  I am 44 with a history of illness since 9 years old. I started losing hearing as a child and by my teens had chronic fatigue and an unexplainable siezure disorder.  I started losing the use of my right side, but only for short periods of time.  My father died at 42 with cancer and only then did I find out he also had MS.

It was in my 20's and 30's, that my body no longer felt like my own.  I had a child young (22) and after he was born my body fell apart. I kept it going until 34-35, when I was at the peak of my career in advertising.  In July of that year I started to lose my memory, my judgment, my focus, became very emotional, extreme fatigue and body weakness.  My left hand would 'die' at night, I had to move it with the other......blaming it on circulation, I ignored it. Then my left foot, and it moved up to the left elbow.  For no reason at all I awoke one night and could not move my neck.  writhing with pain, I went to the dr the next day and there was no explanation.  It took several days and muscle relaxers to make things better.  

Then, I got lost in a part of my very small town that does not even have a red light.   I knew something bad was wrong.  I called my boss and told him and he sent me home, and I luckily found the way.  Confusion has been a big issue with me since.  I told my boss to call me and give me a small bit of normal sales info, wait 5 min and call back.  during that time I busied myself with other things, and when he called I could not recall time, place or what he wanted me to do.

By the time I went to my first neuro appt, the list of symptoms had doubled.  Bladder, bowel, burning and tingling hands and feet, itching to the point I could not stand it, falling from weakness, sleeping all the time, trouble swallowing and choking very easily.  The list can continue.  when i went my mri said nothing and has not since, but at one point I was bed ridden for 4 years.  I had an Evoke Potential that showed MS, so with that, plus the history of my father and my own symptoms they dx me without hesitation, however, my doctor died of cancer and now I am with a very young woman who goes strickly by the book.  Even though symptoms come and go and I have worsened over the years with speach, Cognitive issues, bladder is flaxid, bowels (I never know).  I am numb basically from the high waist down to the top of my legs.

I just wanted to let others know that sometimes though tests cannot 'prove', your body knows.  Thru the extreme pain, spasticity (fetal postion, hands and toes), I am frustrated right now, not knowing what to believe.  This neuro says it is fibro, and I have it in my family, but not with all/every symptom of MS.

[Lulu54]

Welcome.  You have quite the story to support what we tell people here.  Do I take it that your new doctors say you don't have MS?  Sorry if I have that confused.

I often point out that doctors have been diagnosing MS for over a hundred years - we've only had MRI technology readily available for our use for a bit over 20 years.  They used to call  it MS without MRI evidence, and could still do so

Welcome again - I hope to see you around often.  Lulu

[COBOB]

Actually, we tell people all the time that MRI lesions are supporting evidence.   Clinical neurologic lesions are required by the Revised McDonald Criteria, not MRI lesions.  Most neurologists and insurance companies have an issue without MRI lesions.

Bob

[HVAC]

I had my first Neurological incident at age two and was sent to the Mayo Clinic. Of course there were no MRIs in the 1960's. At seven a Neurologist at Duke told my parents I had some damage to my brain and my double vision was permanent. At 15 after an eeg my parents were told there was something stopping signals in my brain. I always had weird reflexes and eye tracking problems. At 44 my PCP noticed while doing a yearly physical I was getting no signals to the right side of me body. Then I had two years of Neurologists and tests. First Neurologist found two lesions and dawson's fingers and said MS but he moved with out finishing diagnosis. Second Neurologist said ADD and Fibromyalgia and no MS. Neuro Opthamologist she sent me to after abnormal VEP said MS. Next Neurologist said it can't be anything but MS but took a year and a half to diagnose it only after I had twelve o-bands on LP. He said I had MS but would not treat symptoms until I was in a wheel chair. Neurologist I have now found I not only had MS but said I have had it all my life.

I have had MS all my life and only have two lesions and my MRI never changes.

Alex