MS in all its glory

I know I’ve posted this before but if I get any kind of infection, eg respiratory tract, dental etc, my neuro symptoms magnify greatly, responding pretty effectively to antibiotics. I believe this makes entire sense as the toxic B cells increase in number to combat the infection, but instead of doing their correct job they migrate across the blood brain barrier to attack myelin, resulting in at least a temporary setback and of course contributing to underlying build-up of disability.

Let’s hope for new therapy to restore myelin and hopefully even restore neurons.

There’s hope in the pipeline, including repurposing use of the diabetic treatment Metformin. If the latter can prove to be helpful in trials this would indeed be sobering to celebrate as it’s generally safe & available.

I returned from spending a week over Christmas in a beautiful flat resort on Riviera Maya in Mexico. The resort hotel grounds were superb for people like ourselves, and indeed I met some a couple of people with MS using wheelchairs on excursions, the tour company having no problem to accommodate them. Hotel staff accommodated me all the time, was able to skip the long queue on Christmas Eve for dinner, staff going around grounds in golf buggies kept asking me did I want a lift between buildings, to beach etc, it I enjoyed being able to try and get in my bit of exercise. Getting to Cancún by American Airlines via Dallas was easy with wheelchair assistance and going home I was met at the taxi at Cancún Airport by someone to assist me, got the most incredibly helpful young man who was most thoughtful throughout. It’s a good place for disabled travellers!

Since returning my symptoms have sharply increased. I haven’t been able to leave the apartment as my feet just won’t work beyond getting me from bedroom-bathroom-living room. My hands and numb, shaky, weak, uncoordinated. My torso is unbalanced and shaking back and forth, difficult feeding myself and swallowing. I know this will likely improve but there is that constant bit of deterioration where overall things keep getting that bit worse.

i am to go for another MRI series soon. There are multiple brain lesions, global shrinkage, and a syrinx on the thoracic area of the spinal cord. The latter is a small lesion where CSF gets trapped in the centre of the cord, if it remains small and stable it may cause no specific symptoms in itself, however it can enlarge and quite suddenly cause paralysis, but can be drained surgically. Broadcaster Ronan Collins had one of these which suddenly paralysed him, and got it surgically fixed. They are not common, can occur randomly but develop to a greater extent in people with MS.

Wait til we get into remyelination & nerve rejuvenation! It’s possible but maybe not probable in our lifetime. If Metformin proves to be beneficial that could be fast-tracked and we could perhaps realistically improve a little.

Trying to take a cup of tea almost impossible, my right arm won’t work reliably to hold cup, half to bring head to table to drink it, it’s really taken a horrible turn.

I know, I want someone to wave a magic wand, I’m feeling devastated atm. I will likely improve a bit, but I’m gathering disability and waiting on further MRIs and HPV test to see if I could have and also benefit from treatment. I ordered a home HPV test which arrived today, at €89 cheaper that getting it at GP etc

I have been doing more research on syrinx formation, well explained below, it may account for my remarkable progression

It can very much be associated with MS as explained below

There is potential for improvement IF my fast deterioration is better accounted for by the syrinx than rapid MS progression as it could be amenable to surgical drainage, indeed would have to be operated on if/when it grows as it can potentially be very serious.

At least you got diagnosed with something 😁 even if it was incorrect 🤣 I was going through records from years back after I came to the attention of a neurologist (not directly related to MS symptoms) who now only specialises in epilepsy, who noted “multiple white matter hyperintensities in cerebral cortex, uncertain cause, she does mention history of sporadic neurological issues which I believe are probably functional in nature”.

Inotherwords, feck off, it’s not my sub-speciality.

I’ve had some neuro stuff going on since hood, I was born with strabismus, and was always falling to one side. Numb right foot on and off since at least my 20s, left hand doing its own thing around same time, always episodes of dodgy balance, single eye pain, blurred vision. But I had very troublesome ulcerative colitis which took centre stage, and for which I received Humira which is actually toxic to people with MS. I had major surgery to remove my colon & ileostomy. Started putting muscle cramps etc etc to electrolyte imbalances which are common enough with ileostomy but blood tests proved these were not underlying my neuro symptoms.

When I had that bad fall that knocked me out senseless last March I underwent MRIs in Blackrock after attending ED next day after spending night on my living room floor & unable to move for hours, but I was under the care of a general medicine consultant who had some kind of run-in with a neurologist he called from another private hospital. She had marked down “Query - MS, CIDP, Vasculitis? Needs follow up in 3 months”. She accused the general medicine consultant of lack of cooperation and pulled out of my care, then the general consultant wiped his hands of me too and has since refused to even communicate with Prof Tubridy whom I now attend in SVUH. He ordered more scans and all sorts of tests, all pointing to MS, but he says it looks like I have a progressive form which might not respond satisfactorily to treatment, which cannot in any case be given whilst I have cervical HPV. The syrinx is being monitored too, likely formed after a spinal lesion caused a necrotic area, now filled by fluid.

The home test kit for HOV arrived today, so will do the test next week, has to be left in at a post office in prepaid envelope on a weekday, except Friday, for processing as quickly as possible.

Not at all, I always welcome questions, suggestions etc, knowledge is power as the Mayan Mexicans say.

After my bad fall last March which rendered me unconscious in a pool of blood on my living room floor, and unable to move for hours after I came around, I got an Apple Watch which has fall detection and an alert system. Indeed I spoke about it at an MS conference, and sone other people took note to buy one. No subscription required. It will alert two named people plus emergency service. My next door neighbour has an emergency key, as well as a relative living two kilometres away. They all have each other’s contact numbers etc, so I have a network in case I did take a tumble.

The alerts that Recode has fallen go out to my contacts, they then phone me and ask am I ok, if I do t respond they contact emergency services, the people with keys etc who can then gain access. Modern tech is really great for anyone with any kind of disability, even anyone simply living alone as anyone can fall.

I feed a surgeon I attended earlier this year told me he bought an Apple watch for his elderly mother, as she was living alone, but was trialling it himself so as he could explain it to her. He went to a party wearing the watch, had too many pints, got on a skateboard, fell off it, and lo and behold an ambulance got summonsed but all he really hurt was his pride!