Due to an MRI that has remained unchanged over the past 2 years, my neuro has ruled out MS (he originally suspected progressive MS due to my symptoms that have been ongoing for many years). The original MRI shows approx. 15 very small white matter lesions that are non-specific. About half of them are between 3-4 mm in size, and the rest, smaller. An MRI four years (done because similar symptoms) previous to this one, showed no lesions. This dr. is saying that the lesions are simply due to 'old age' (I am 48) and that they have nothing to do with my symptoms...essentially, that at my age, 15 small white lesions are perfectly normal.
This dr. refused to order a lumbar puncture or evoked potentials simply saying that he didn't think it would help with a diagnosis. He told me that he doesn't see any point in continuing in seeking a dx, as he simply does not know what I have. He does acknowledge though that 'there is definitely a neurological problem' and that my clinical symptoms are increasing. His examinations found; bilateral babinski sign, progressively increasing spasticity in all limbs, very brisk reflexes (worse in R. leg), areas of decreased sensation, decreased vibrational sense, balance problems.
Other symptoms that have been steadily progressing over the past 3 years include; numbness/tingling of extremities that comes and goes, near permanent numbness in R. foot toes and Left buttock area. "Sock" sensation over right foot & ankle area, "pressure" sensation on L side of upper back...often feels like something crawling up me and/or squeezing, Bladder urgency (up several times during night) and a few instances of retention, R. side facial numbness and tiny spasm around eye, R. side tinnitis that has been present for about 8 years now, intermittent electric shock-like (snapping) sensations that shoot down to hand in side of neck when bending, a feeling of 'stiffness' in ankles, legs, hands and forearms. (getting worse), It gets difficult to walk particularly following exercise or a hot shower. Am having increasing difficulty opening packages and such with hands as they are slowly weakening and stiffening, Extreme fatigue that hits late afternoon and renders my mental faculties almost non-existent, memory problems and confusion that come and go (usually related to fatigue levels), blurred vision when exercising, also patterns 'move' when I look at them, intermittent vibrating vision, dizziness and balance issues (few episodes of rotational vertigo that cause vomiting and inability to walk straight), muscle weakness and a sense of 'heaviness' that comes and goes ( in legs and arms), painful spasms in feet, legs, hips and more recently in hands, tiny muscle twitches most often in back and torso when relaxed, heart palpitations after meals, intermittent swallowing reflex being too brisk (often choke on liquids and when sleeping, stabbing, fleeting pin-prick sensations on R. side of face, hot/cold/wet sensations all over body (mostly on legs), the 'hot' feeling is getting worse, lasting longger and verging on painful, R. hand tremor when arm muscle is engaged, intermittent extreme itching of armpits, palms and bottoms of feet, no rash whatsoever.
All symptoms worsen after a hot shower or when exercising (which is at a bare minimum these days), I always have to lie down after showering and blow drying hair. My arms often get weak and heavy in the shower as I"m washing hair...must put them down to rest. I recently cut my hair short as my arms were getting too weak as well to comb it out afterwards. It would feel as though I'd lifted weights for hours and exhausted my arm muscles...same happens in legs.
I had increased energy this past weekend and did some cleaning and lifting of boxes and a few hours later, could hardly walk for the stiffness in my legs, lower back and hips. It took several baclofen to quell the pain and ease the tightness even a little.
Other test done: An EMG, which was normal (dr. said this indicates my problem is central rather than peripheral), Lyme test - Neg, ANA - once positive and now negative, mildly low platelet count (for over 10 years now), B-12 - normal, Spinal and cervical MRI - normal.
Needless to say, I was shocked and very upset when this Dr. dismissed me as a patient, ruling out MS, but providing no suggestion as to what this could be, particularly because he refused to perform any further testing. This is the third neurologist I"ve seen over the past three years. The first two denied there was any neurological problem at all, so perhaps I should at least be thankful that this guy is acknowledging an abnormal neuro exam.
He told me to see my GP if I wanted to pursue a diagnosis with another neurologist but he simply didn't think he was in a position to help me. In Canada, there's a shortage of specialists and I will now be waiting up to a year to see a new neuro...with again, no guarantees that he/she will have the specialized knowledge I'm seeking. (I've put in a request though to see one who specializes in MS). This waiting and wondering is the worse part. Hard to plan for the future when I simply have no idea what to expect.
I'm wondering if this still could be progressive MS, despite the fact that the MRI has remained unchanged for two years straight and despite the fact that here are no spinal lesions...? Would appreciate any help any of you could offer. Thanks in advance! What other possibilities exist that are of a central nature and that would cause all of these symptoms...in particular the worsening of symptoms with heat?