[vs1988]

I'm a 25 year old male, and I've had signs and symptoms for about ten years which seem to be consistent with relapsing-remitting MS, but have not been able to get a diagnosis or appropriate testing.

My first symptoms started around age 15. I developed muscle twitching, loss of balance/coordination, weakness, and fatigue and was referred to a neurologist by my PCP for a neurological work-up. THe neurologist ordered an EMG which came back negative. This cluster of symptoms would wax and wane over the course of months to this present day. At age 18 I experienced my first and only visual symptom. While doing homework in my dorm room at college I lost vision in my left eye and could only see a "kaleidoscope" pattern in the middle; the outer field of vision went completely black. I was taken to the ER and they did a CAT scan, which was negative. Doctor diagnosed me with a migraine and sent me home with no follow-up. Eventually my vision returned over the next couple of days. My next major episode was at age 24 last October, when I experienced a gradual onset of vertigo and loss of balance. It peaked over several days and got to the point that I couldn't focus on moving objects or hold myself steady. I went to the ER, and they ran a complete blood count and electrolyte panel. All tests came back normal, and doctor said it was probably stress and sent me on my way. Eventually the symptoms subsided after about two weeks. September of this year, I developed right sided weakness in my arm and leg. The leg weakness is not as pronounced other than feeling wobbly and slightly off while walking. The arm weakness is more obvious--I'm having a hard time opening jars, turning my car keys, buttoning my shirt, etc. This weakness/lack of coordination developed slowly over a course of weeks and hasn't subsided.

Throughout the past ten years that I've been having these strange symptoms, the two big things that led me to suspect MS was the visual disturbance/vision loss, which I understand is a major MS symptom, and the fact that these symptoms come and go in episodes that last for days to weeks. In between the major episodes I described above, I also have "good days" and "bad days" as far as fatigue/overall weakness; on my bad days I'll feel like I've just run a marathon and can barely scrape myself out of bed despite having gotten a good night's sleep. The fatigue episodes cycle more quickly than the major neurological ones.

I've spoken with my PCP about this at length, and she dismissed it as migraines/stress/anxiety and wouldn't refer me to a neurologist. Unfortunately my insurance plan requires referrals to specialists or they will not cover. At this point I'm willing to pay out of pocket just to see a neurologist and get tested. To make things more complicated, I have a suspicion that these symptoms might also be the result of long-term Lyme Disease. I grew up in a rural/wooded area in Connecticut where LD was widespread. As part of the work-up early on for these symptoms my PCP had me tested for LD; the ELISA came back positive but the Western Blot negative. I understand, however, that LD tests are notoriously inaccurate and that chronic LD can mimic MS.

For those who were diagnosed, what tests did you have done/requested? How long from symptom onset until you were finally diagnosed with MS? Just wanted to get some overall advice/support on how to handle this. Thank you.