I had my 1st attack back in January 2011 that left me numb and paralyzed from the waist down for 3 months. I have since had 2 rounds of MRI's w/ w/o contrast, a plethora of blood tests and consultations with a Diagnostic Specialist Neurologist @ SHANDS. After my 1st visit @ SHANDS i was diagnosed with Transverse Myelitis. I have since been admitted and treated for an attack with Solumedrol IV infusion for 3 days. I also had an LP and more bloodwork on this visit. At this point, all results came back normal. Since this time I have had a 2nd consult with the Neuro @ Shands and got my first abnormal lab result on a Sensory Evoked Potential test and am now awaiting a Visual Evoked Potential test as I'm having some eye pain and blurry vision also. @ this point, I'm thrilled to get abnormal results as my reg neuro was getting doubtful of a MS diagnosis and was thinking Somatization. MY Shands Dr is thinking it's either Relapsing Transverse Myelitis & Neuromyelitis Optica or MS with Optic Neuritis. I'm thinking since TM is so rare 1-5 per million statistically speaking its much more likely that I have MS/ON. Also since MS is more treatable I'm crossing my fingers for MS (crazy huh?). I have had flares which typically result in paralysis from waist down, and electrical shock like pain, muscle spasms, fatigue, eye pain, blurry vision. I have had 2 attacks that have affected my swallowing and left me on a thickened liquid diet for a couple weeks. So my VEP is on 11/9 and appt w SHANDS Neuro is 11/22. Of course, I had a flare up start on thursday, and am trying to decide whether to call my reg neuro or not. Last time I called in he admitted me for 3 days. This was really hard on my kids. Although the Solumedrol helped restore strength and knock out the flare it made me completely miserable for 2 weeks after stopping the steroids. The crash made me feel like I was run over by a mack truck. So, trying to weigh the value of a shorter relapse vs the side effects of the Solumedrol. Of course, if this was a few weeks later I would have a diagnosis and more treatment options, but such is the irony in my life these days... LOL... Does anyone have any opinions or suggestions for me as options? I have tried to research but so far it doesn't seem clear if the Solumedrol prevents future damage that a flare can cause or if it's just a temporary fix. If it's the latter then I will be more inclined to attempt to tough it out. However, if not treating this relapse can cause future neurological damage, then I'm more inclined to take the meds and deal with the miserable effects of the crash after the steroids. Also not sure if they would treat me with the Solumedrol again so soon since I just had it back in late august early september.
DO most ppl struggle getting a diagnosis? Maintaining the diagnostic process has been like a part time job for the last year. Now that the Neuro @ SHANDS saw that there were indeed lesions they were just not viable via MRI he wants to get me on meds ASAP. I'm like really? Welcome to my world that's where I've been for almost a year now. Uggh...
I would appreciate any advice you guys have as to your experiences.