I'm becoming VERY frustrated with my situation. I've had the following symptoms that have progressed over the last 3 years and am tired of feeling so awful night and day! Anyone with any advice or information to pass on?!
Stabbing pains & electrical shock sensation on the left side of my head. Numbness, tingling and burning sensation in my face. Eye pain behind my left eye, sore eyes with movement and at times temporary loss of vision in my left eye. ((I have already been given the Dx of Trigeminal Neuralgia.)) Dizziness, confusing, memory loss and problems finding words.
I also have severe joint, muscle and bone pain throughout my body. I was also given a Dx of Fibromylgia, but I KNOW it is caused by an Autoimmune disease (I have tested positive for such time and time again... although my Neuro has given up looking for the real cause of my illnesses). I have swelling in limb, loss of use in limbs, I have trouble acknowledging if things are too hot or two cold...I have extreme Chronic Fatigue (also Dx'ed as so). Severe tremors in my hands, legs and head. Severe muscle weakness, unable to bear weight on legs due to pain, my limbs at times feel heavy/weighted down, and I cannot begin to truly describe how painful the numbness, tingling, burning (face, hands and feet feel as though they're on fire while the rest of me feels like I have the worst sunburn), itching and the shocks all over my body are!!! It's a toss up of what I'll experience from day to day. The pain is never gone, the fatigue is getting worse and my flare ups are coming more often and to a more extreme strength.
I have had a normal MRI, EPT, and blood tests come back clean for MS. I have not yet had an LP, but with tomorrow's visit to my Neuro I'm going to request that it be done. I am frustrated at the fact that because the dr did all his surface tests and the only thing that came back positive was the Autoimmune tests, he doesn't want to look any further. He just wants to "treat what we know you have". After 3 years of severe flare ups that are now at least once a month-lasting a week or two at a time or simply lasting months on end- I'm to the point where I'm going to start pushing. I don't want to be one of those patients you'd hate to see, but have to deal with anyway... but this is my life. I'm 25 yrs old with two childs. I am disabilitied by my symptoms and can't enjoy my YOUNG life with my boys because no one wants to continue looking. My gut feeling is that it's MS, but I don't know how to approach my Dr. without him thinking that I'm crazy.
The symptoms have piled on over the years and I suffer from nearly all the classic signs of MS. I have done my research. I've learned that there ARE MS suffers that won't have lesions at the start of their disease and some that simply won't ever have them. I've also researched the fact that you can also have normal MRI, EPT, LP and ect testing. Most Dr's agree that is best for determining MS is 1. Patient history and listening to complaints of symptoms and 2. Physical examination. "Silent" lesions are a possibility, majority of MS blood testing is to see how long it might be until you have another relapse... Not to see if you have the disease, how severe or how soon your next relapse might be (Though there is a new type that will determine when your next might be). So why aren't the dr's taking the time to examine us fully?! Why aren't they taking into considering that every living being is never the same?! Why are they simply not listening to us after they can't find the easy answer?!
I'm sorry this was so long... but I'm just plain fed up with the Dr shrugging his shoulders at me, scratching his head and saying "I dunno".