I'm hoping for advice and experiences from those most knowledgable about the disease - those living and breathing it everyday. A little background - I'm 34 years old and about 10 years ago suddenly started experiencing urinary urgency/frequency. I endured about every treatment possible and none of them resolved the symptoms, my urologist and I left it at neither of thought pursuing a bladder augmentation was a good idea given my age and associated risks. A cause for the bladder dysfuntion was never identified, however. At one time, my urologist had sent me to neurology to be evaluated - MRIs of the brain and spinal cord were normal. Additionally, I was referred to a neuromuscular specialist who noted an extreme heart rate response on a tilt table test, but no other signs of autonomic dysfunction. After a while, I just got tired of doctors and tests and decided it was easier to live with the symptoms and have been doing so for the past 5-6 years. However, earlier this year I started having some imbalance/dizzy sensations - sort of that 'I'm on a boat' rocking sensation. Additionally, I'd occasionally have what I call my 'bouncing foot'. I somehow found myself back in a neurologists office who was able to get a few beats of clonus and some mild spasticity in my left leg so back into the MRI machine I went along with blood work to assess for inflammatory conditions. The MRI came back normal again and my blood work was normal, except for a 1:360 titer on ANA and a 1.3 OD on the EIA ANA test (not sure what the difference is). Seeing a rheumatologist, he basically said we have to wait out a high ANA - without any specific antibodies coming back positive he couldn't help - so I went back to living with the symptoms. Fast forward to today, I'm finding a deep aching/throbbing pain in both of my legs that gets worse with activity - anywhere from vigorous exercise to cleaning my house - and will hurt so bad it's hard to fall asleep unless I curl up into a tight ball. I saw a new GP who based on my assessment took a similar course of testing as I've previously endured - blood work to re-check my autoimmune antibodies and referral to a neuromuscular specialist. My ANA antibodies were now a 1.6 OD on the EIA test but only a 1:80 titer - why one went up and the other down I have no idea - no one can tell me why it's getting measured different ways. All other antibodies negative still. Neuromuscular guy noted same few beats of clonus and left leg spasticity and dismissed me (I mean literally walked out of the exam room and never came back).
I'm here because the one thing my GP had said before I left is that even though I've had two sets of normal MRIs doesn't mean MS can be ruled out and I find that very frustrating. I'm having a hard time believing it could still be MS, but because my mom has the disease and I'm prime age, it's all any doctor talks about. I want to know from everyone's practical experience, does this even sound like it fits or is even still a diagnosis on the table given the timeline and clean MRIs? I just don't want to waste my time in the wrong places anymore or end up in that MRI tube again because there are few things I hate more :)
Thank you all in advance!