Hi, I've been suffering for about 15 years with relapsing/remitting symptoms of nerve pain, bilateral hip and leg weakness and spasticity and hyperreflexia progressing to no reflexes, then eventually normal reflexes, worse on the left, that leaves me in and out of a wheelchair. They have never found any evidence on MRI for anything, other than about 12 years ago, they thought maybe I had TM b/c of something they thought they saw on T-spine MRI. I've never had optic neuritis, though I used to have double vision and went to a neuroophthalmologist who said I had some demyelinating thing going on, but could never prove it. I used to have problems with voiding and used a catheter for awhile, but that was many years ago.
After rehabbing for a year 4 years ago, I thought everything was gone and I've been back to normal for 3 years, except for increasing muscle fatigue over the past year, and recently just having to sleep a lot and rest a lot, which is definitely not like me. I went to the Neuro and Rheumy a few times due to the fatigue, and was put on MTX 10 mg about 7 months ago, but the only thing it's helped are the mouth sores I was getting frequently. 3 weeks ago, I suddenly began having muscle spasms, twitches, and cramping pain in my legs, pelvis and arches which would be worse when I lay down at night and would not quit all night. They were extremely painful twitches, and I also had painless twitched all over my body where you could see my muscles fasciculating. I could feel my muscle moving and my legs cramping all night, though you could see nothing moving at all. This caused my legs to be very tight and ache badly when I got up in the mornings, feeling like I'd been running all night, and increased my fatigue. Then, about 2 weeks ago, I got up in the morning, could barely drag myself to the bathroom, could barely get my electric toothbrush together, had to sit to brush my teeth, drug myself with my walker (which I hadn't used for over 3 years) into the laundry room to throw in some clothes, which just about did me in, and went and lay on the couch. I was so exhausted, I felt like just breathing was more energy than I could afford. My husband came home early b/c I was supposed to go somewhere, and he called the squad and they came and took me to the ER where they found nothing "organic". I could not move my arms, legs, could barely speak or open my eyes, I was floppy and just so profoundly tired I didn't care what happened to me. This lasted for about 9 hours and by the time they transported me to the university hospital where my neuro is, I was able to move around a bit and talk a little.
My MRI's showed several abnormalities, but nothing specific. Brain: "There are a few tiny foci of increased T2 and FLAIR signal throughout the periventricular and subcortical white matter, these are nonspecific and may represent minimal chronic microvascular ischemic change, with other etiologies not excluded. There is no restricted diffusion to suggest ischemic change." So, am I correct to think they're saying it could be ischemic change but there's no evidence to support that?
Then, on brain MRI they also found: "scattered mucosal thickening within the maxillary, ethmoid, frontal, and sphenoid sinuses. There is minimal mucosal thickening in the mastoid air cells." I have absolutely NO sinus issues, ever. I never catch a cold, never sneeze, never cough, never even have to blow my nose b/c I have absolutely no stuffiness or anything. Why would my sinuses be thickened?
Thyroid: "There is a small focal area of decreased signal within the the thyroid that demonstrate hyperintense signal on T2, that could be better clarified via dedicated thyroid ultrasound." Again, I have no lumps or pain in that area.
"The postcontrast images demonstrate slightly prominent vasculature along the dorsal thoracic cord, was also noted on the thoracic spine, dedicated spinal angiography may be obtained to exclude possibility of a tiny fistula with resultant prominence of vasculature." They did a CT angiogram and determined this was "nothing".
"There are focal areas of heterogeneity within the bilateral kidneys that could be better clarified via dedicated ultrasound." What's THAT?
"The thoracic spinal cord demonstrates generally unremarkable signal intensity and morphology. There is prominence of the vasculature noted on the postcontrast images along the dorsal aspect of the cord this is noted to extend from the T5 level inferiorly to the T12 level there are prominent vascular structures noted along the dorsal aspect of the canal on the T2-weighted images, to exclude a possible underlying vascular fistula or lesion in the thoracic cord, improved assessment of this area via dedicated spinal angiography may be obtained as clinically warranted."
"EMG: NCV normal. On needle exam there was some incomplete motor activation that may be due to upper motor neuron disease."
They told me everything was normal except for the vascular thing on my T-spine which they came and told me at first was an AV fistula, then the neurosurgeons came in and said it was probably nothing, they did the CT angiogram and said it was nothing.
I also had a 4 cm sclerotic bone lesion show up incidentally on my iliac bone which was new and it corresponds to a bony growth I've felt in my left buttock for about a year now. They did a bone scan which showed "Blood pool images demonstrate mild increased blood pool about adjacent to the left iliac bone. This corresponds to irregular
calcification seen on recent radiograph. There is also mild irregular blood pool activity in the proximal left thigh.
Delayed bone phase spot images of the pelvis and upper thighs demonstrate focal radiotracer activity overlying the left iliac bone. This is only seen on posterior projection, supporting location in the soft tissues posterior to the iliac bone.
Is it possible for one person to have so many abnormalities in so many areas and yet none of them are contributing to my ongoing 15 year relapsing remitting pain, weakness, and disability?
Can MS show up this way? Could it be vasculitis (I had juvenile dermatomyositis as a child, but that's been in remission for nearly 35 years) or just a weird autoimmune problems that they may never be able to diagnose? Am I in danger of having a stroke (I've also had 3 bouts of ischemic colitis in 3 years), or are these totally unrelated to my leg symptoms and fatigue?
Any light anyone could shed on my very complicated case would be greatly appreciated.