Hi, could anyone out there help me?
I am 43, normally fit and healthy with no previous illnesses. Back in June I was struck by two episodes of dizziness, nausea and the most debilitating brain fog that I can possibly describe. It was so bad that I couldn’t focus enough to complete basic tasks, could not speak without forgetting what I was saying and couldn’t summon individual words. The GP thought it might be labyrinthitis and gave me medication for that.
About two months after the first episode, the second episode stuck. This time, much more aggressively. When the brain fog was at its worst, I became incontinent and also had hearing loss. I then started bodily jerking (which I now know is myoclonus). It started in one knee, but travelled up my body into my trunk, making me crunch in half. I would have twenty minute episodes about four times every day. I would also have individual spasms in reaction to loud noise or bright light. This lasted for about two months.
One day the myoclonus was so bad that I broke a back tooth. I decided to take myself to A&E and they kept me in hospital for ten days doing tests. I had a head and body CT scan, a million blood tests, a brain MRI and a lumbar puncture. They couldn’t get me on the list for the spine MRI, and was told they’d do this for me as an outpatient.
When I was discharged, I was told that they’d found nothing in any of the tests, the lumbar puncture showed “normal protein” and glucose, but that my brain MRI showed acute small vessel disease which was incidental to my symptoms. This was less than a day after the LP and I wasn’t sure if the whole bank of tests had been run on my CSF. I was told that some aspects of the tests would take a few weeks to develop.
I managed to speak to a registrar from the Neurology team to have them explain the meaning of the MRI. He said that he had reviewed the images with a neuro radiology specialist and they felt it definitely wasn’t small vessel disease. However he said that my lesions were inconclusive because of their size and distribution. He said they could be migraine, stroke disease or MS, but I’d have to speak to the Neurologist to find out which.
On the day of the neurologist consultation, I’d had so long to wait for the appointment with the threat of bad news, and I was so anxious. I still hadn’t had the spine MRI though so I was conscious that I probably wouldn’t get a diagnosis that day. I explained my symptoms to the neurologist and he did listen. However he almost immediately said that he had looked at my mri, could see four lesions but they were all inconsequential and he didn’t feel that they were any cause for concern.
He then said that he couldn’t view my LP results because they were “held on a different computer”. However he was absolutely confident that this was NOT MS and was taking that option off the table. He then prescribed clonazepam for spinal myoclonus and fasciculations, and girdling around my ribs.
Does this sound right to you guys? Can he really be so certain to say not NS without my LP results, and without a spine MRI?
Ive read that spinal myoclonus can sometimes be the result of spinal lesions. How can the neurologist be so sure before all of the results are in?
Any sort of experience/advice would help me so much.