Okay, I really need some advice and input. I have put some of my background in other postings but just to reiterate:
I am 30 years old. Diagnosed ON 9 years ago. No symptoms, then episode numbness/tingling on my left side two years ago. Diagnosed ON this past March and still having symptoms (including pain, decreased vision, color loss + tracking problems). Negative brain MRIs, three lesions present in my spinal cord, Negative LP. Postivie neuro exams with hyper-reflexia on the left side and weakness. Sensitivity and exacerbation of symptoms with heat (ie. numbness of left foot when running, decrease vision and weakness after hot showers). I also have neuropathic pain in my right leg that no one has been able to help me with...don't know what that is about.
My problem is that these symptoms and facts are real to me. My GP and Opthamologist have told me that I likely have MS. My neurologist initially told me that I could be in the preliminary stages of MS though I had no lesions on my brain MRIs to explain the ON and other symptoms. But the last time I was into my neurologist (in october) they said that based on my history of abuse, mental illness (I had an eating disorder when I was in high school and college) and stressful lifestyle they thought I could possibly have a conversion disorder. I have seen a counselor about this and they said that they could find no evidence that I have an anxiety disorder or am depressed in anyway. According to them, I am not psycologically ill. I even tried a course of antidepressants at one point in this whole deal and that was when I relapsed with ON the second time.
I don't know what to do from here. I really felt so dismissed and embarassed by my neurologist. I am medically trained and I aggree, if there is no scientific evidence of lesions, I would think that maybe it is in the patient's head. But I have also been trained to listen to the patient -- this patient is saying that something is not right.
Right now I am feeling really guilty because I was supposed to have a repeat MRI done on this past Tuesday. I cancelled it. I just couldn't bear it. I didn't want to sit through it. I didn't want it to be positive and I didn't want it to be negative. I just don't know what to do from here. If I see another neurologist this would be number three and I would be walking in there with the comments from my previous neurologist about "possible conversion disorder". I worry though because it is not normal to have ON twice. I just want someone to validate that what I am experiencing is real. Maybe it is not MS, but I am not crazy either. Something is going on with my body.
I trust and value your opinions and knowledge and would really appreciate some input. It is scary for me to even put this out there as I feel so discouraged right now about the whole situation. I try so hard to put this out of my head but the symptomatic daily reminders make this really difficult.