My story is long and confusing so I'll try to keep it short. I'm a 38 year old women living in Utah. This last April, I started having arm weakness. It was a feeling of heaviness and sluggishness in my forearms and hands. I was dropping things easier and I had a strong perception of weakness in my hands. Not long after this I developed a constant ringing (tinnitus) in my ears, fullness, hearing loss, dizziness, some vertigo, etc. Shortly after that I found out I had a rare inner ear condition called Superior Canal Dehiscence Syndrome (SCDS).
Within a week or two of having the weakness, I started twitching in my left upper arm. It was an almost constant twitch and was nonstop for 2 days. I also had tingling and numbness in my fingers and hand. I went to my doctor who suggested it was a pinched nerve and that I should get a nerve conduction study. Shortly after this the twitching went full body. I had them on my calves, feet, thighs, butt, stomach, back, chest, neck, arms, fingers, lips and eyes. SCDS doesn't cause muscle weakness and twitching. Lately the twitches have been on my face more often than not, usually the lips or eyes, but sometimes my tongue will twitch for a second. The twitches on my body vary - some are small and short, like a single pop. Others are big and more frequent. I'll get a twitch in my lower arm and it will make my finger bend downward. I get them on my stomach and it feels like I'm pregnant again! (I'm not really pregnant). I saw a couple of neurologists. They did a brain MRI and spine MRI. The brain MRI showed 10 small lesions in the frontal lobe. They said they didn't know if they were from MS because MS lesions aren't usually in the frontal lobe. They said they could also have been caused from mini-strokes or migraines. I personally think I'm a little young to be having strokes, but I guess it's possible. The nerve conduction study was normal. I also had a weird buzzing sensation in my left hip that lasted for 2 days. A few weeks later I had the same buzzing feeling on the bottom of my foot. It feels like there was a cell phone implanted just under my skin and it was stuck on vibrate. It was so annoying!
With the spine MRI, the nurse called to say the MRI was clear. However, when I read the MRI report that they mailed to me it said "one possible spinal lesion". What??? Moving on... I then had an MRA (angiogram) done on my head and neck to check the veins and arteries. The results came back that everything was fine except there was significant narrowing of the internal jugular veins, more narrowing on the right side. The radiologist said he felt this was "anatomical narrowing rather than true stenosis". Again, I don't know exactly what that means. Apparently no one thought it was important to talk to me about any of the results from the MRA or spine MRI.
Lately I'm having issues with bright spots suddenly appearing in my field of vision. They are quickly gone but are kind of annoying. Also I have had a huge increase in eye floaters. I have no idea if that has anything to do with ms or not. I have an incredible amount of brain fog and memory problems. It could be from the lesions, but it could also be from the Superior Canal Dehiscence. I just had brain surgery 3 weeks ago to repair the dehiscence, but I'm still having a lot of brain fog. I don't know what the brain fog is caused from, but it definitely interferes with my daily life, as does the exhaustion, anxiety, and exercise intolerance. If I sit in one position for too long, my calf muscles cramp up, like the big painful kind that make you scream out.
For the first couple of weeks, I worried about ALS. The weakness started in April, the twitching shortly after that, but now it's almost October. I would think that if I had ALS I would be showing some signs of muscle atrophy and clinical weakness by now... yet 6 months later, I have no atrophy. I don't believe it's ALS anymore. I was seen by a neurologist in an ALS clinic who did an exam on me and immediately ruled it out. I was seen by an MS doctor at the local MS clinic, but it was in August and most of my symptoms had actually gone away. I felt a lot better so I just kind of looked at her like.... I guess I'm healed? She said if anything else happened to come back in.
My question is, does this seem nothing like MS to any of you? Does MS get bad for several weeks, then just go away suddenly? I don't want to spend too much time or put too much energy towards learning about symptoms and details about MS if I probably don't even have it. One of my neurologists wanted me to get a lumbar puncture, but I wanted to wait until after my brain surgery to get that done. Has anyone had anything similar to me? Does this sound like I'm on the right track seeing MS doctors or should I be seeing someone who specializes in general neurology? Help!