Oct 02, 2013
I've now had 4 weeks of trigeminal neuralgia (end Jan - March), 2 bouts of hemiparesis (April/May then August/September). I lost my sense of taste completely for around three weeks in April.
During hemiparesis, my gait is shot (can't flex right ankle up), get atrophy in my right calf, weakness in right muscles from neck down to foot including arm. I can't write/type/cut/other dominant handed things. Grip is nil. In August, my 11th cranial nerve acted up and my shoulder dropped. Felt dislocated August and September, and eventually ran into problems with pain in my forearm and numb 4th and 5th fingers -- probable cubital tunnel syndrome. PT taped my shoulder in place hoping it would heal at some point .... and it did! Pain and finger issues resolved, just a couple of weeks past the end of the second period of hemiparesis.
I've had bladder urgency and incontinence (Jan - August), plus a period of bowel stupid (only 3 weeks) which overlapped with severe loss of balance many times a day. All of this has resolved completely. Also two week-long episodes of visual disturbance; none since May.
I have two areas of reduced sensation on my back (started with one small one that expanded out towards my shoulder, then added second one which is also getting longer now). First stuff on my left.
I now have fasciculations, which started up in August in right leg, then started mildly in left as well, and now are anywhere from mild to silly in both legs.
My brain is toast. Permanently, at this point, it seems my decision making ability, multitasking ability, executive function, and my short term memory have gone AWOL. During flares of "whatever this is", I can add serious cog fog, confusion, using wrong words, slurring, inability to follow a conversation and stroke-like presentation. I even type wrong words. Also I seem to no longer be able to "picture" things in my head, which is weird.
I have chronic sinus issues and still wonder about whether there is some sort of correlation -- they started after dental work was done in April 2012. Just recently had this tooth pulled, and was hoping somehow it was responsible for everything ... heh, heh. Now being see by an ENT re: a communication, the chronic sinus stuff and some swallowing trouble I've had.
I have very disordered sleep and slept only 0-4 hours a night from March 15 - May 27. Then six weeks of decent sleep due to a drug that I then had side effects from and had to taper down. Slowly I've inched up to 4-5 hours sleep -- but I'm sure this is contributing to the brain that doesn't work. I've lost 40 pounds now -- was trying for the first 35, however am trying not to now and still losing (thankfully I have lots of margin). The more recent weight loss is primarily from muscle atrophy I think.
I've taken way too many antibiotics for random infections I've never had before. I've had 5 mri's and an mra, most recent brain, cspine, tspine w/wo contrast (won't hear about the last set until my ms neuro appointment end of October). The radiologist who read mri no. 2 said it met McDonald Criteria (2010) for ms. Every neurologist I've seen, including my current neuro who I trust completely, says the radiologist is wrong (yet an ER doc I had told me that she was excellent when he read over my report). My neuro says mri absolutely says "Not ms" although he knows something is wrong. I've had a thyroid workup (overall normal), a sinus catscan, and a chest x-ray.
Actual dx and signs ... trigeminal neuralgia, pyramidal tract signs (right babinski, hyperreflexive on right). I have a differential diagnosis of some sort of rare CNS vasculitis.
Now this week I'm having stabbing pains when I breathe which escalate to pain all around, on the left. Ruled out -- tumour/cancer/pneumonia/muscle strain/pulmonary embolism/asthma. I have mentioned ms hug to my doctor, but he is obligated to rule out serious stuff. OR it could be a reaction to the antibiotics I'm on, or possibly vasculitis? Feel like I'm not getting enough oxygen, but airways are clear and a puffer doesn't help. My gp calls it air hunger.
VEP's Thursday, which I imagine will be fine. Bloodwork fine, although last creatinine was up.
I'm starting to feel worn ... despite being an optimist. I'm tired of wasting taxpayer's money ... but grateful I'm Canadian and these tests are available to me with no cost, else our family would have been financially ruined by now.
Just wanted to summarize everything here because it had been a while. Last week my neuro's office called and booked a follow-up for October 31. I would love some answers, but I've had so many ups and downs (yes, it's ms, no it's not, yes it is, no it's not) I'm not sure if I DID get dxed I would even "believe" it.
This crazy journey continues ... :-). Peace.
Edited November 5 to add; Saw neuro; still in limbo. Neuro is sticking with "lesions too small"; in addition he can't find a lesion in my corticospinal pathway that would explain the pyramidal symptoms/right side weakness. Next appointment May -- we're at wait and see. BUT ... no more investigations for mimics? Other cause? Just had a sleep study.
August/September flare resolved, fascs disappeared, but they have since started up again. Also some spasticity. Also I've had two bouts of swallowing issues (one while on amitriptyline; the other after an albuterol treatment) -- wondering why I'm so susceptible to this side effect? It's taking a long time to go away this time.
Of other interest; most recent mri done at teaching hospital had odd report -- short, vague and it essentially dissed previous radiologists report of the same lesions. (For instance, there are no periventricular lesions ... where previous radiologist identified, measured and labeled 2; same with 2 juxtacortical lesions). Hmmmm.