MS in all its glory

I often describe it to people on my worse days that it feels exactly like divers weights have been tied to lower legs, with tight bands around calves, and cutting off nerves like tightly crossing legs. MS can be fairly well simulated in healthy people.

Edit - wrong thread!

Attended the SVUH MS Clinic this morning, seen again by Prof Tubridy & examined by students, one of whom asked me to try tandem walking, which is impossible for me. Prof Tubs furious about how I was neglected for years when I mentioned episodes of foot dragging etc and was dismissed, and he says my GP is most uncommunicative, as is a doctor who “looked after me” in Blackrock.

As I have HPV , he says treatment is not possible unless I can clear that, and what’s more it looks questionable that I have progressed beyond a window where treatment would be effective, I nearly took a toss when in seeing him, he thinks it’s not at all ideal that I’m living alone.

But he is ordering another MRI and I had 16 blood tests this morning. I’m to be referred back to gynae re the HPV, and he will see me again around February/March.

Yesterday had a very bad day with mobility, as well as recent severe short term memory loss & increasing fatigue. Was out doing shopping, supported by my stick, could hardly move either leg, ended up coming to a stop for several minutes, left leg refusing to budge an inch extra with stiff muscles, right leg doing its thing of buckling under me. I was stuck to the spot for a minute until I inched forward and got to a shopping trolley for support. Very depressing how it’s so badly catching up on me, all happened so quickly this year.

Well meaning people suggest I get shopping delivered etc, the point is I absolutely crave getting out and about and if I make a habit of being stuck looking at the 4 walls the muscle I have left would perish and I would get utterly depressed as I live on my own.

Prof Tubridy said if or when I get treatment it will likely be Ocrevus, but that having pathogenic type HPV rules any treatment put altogether, unless I can find myself clear of it, as risk of cervical cancer would be too great. Also before offering Ocrevus he is making sure I don’t have a very similar demyelination to MS (Anti-MOG disease) which would require very different treatment. He said any attempt to treat me might be too little too late and he should have seen me years ago.

I got Covid last week, it was a very short few nasty days, really very minor in the scheme of things. However the MS has been frighteningly bad since. I have almost no feeling from the waist down, can’t feel my legs at all but for vague pins and needles. Except when they itch like mad, or I get crawling sensations or that feeling that hot water is trickling down which I sometimes imagine is urine, which it’s not, or sometimes I feel like fingers tapping me. But I keep hitting my feet into things and tripping nonstop unless I’m looking down ALL the time at what my feet are doing. I’m losing mobility very fast, getting constant spasms around my torso, but I’ve learned a psychological trick for relieving this.

A poster mentioned about having symptoms since childhood. I used to tend to fall over sideways often as a young child, and there were other issues, but I thought these things most happen everyone. my mother was given the banned drug DES during her pregnancy with me, allegedly at the time to prevent miscarriages. It creates all sorts of challenges in offspring, particularly females, and alters genes. I had ulcerative colitis until I got my ileostomy in 2016, a condition that comes with autoimmune reactions in joints, skin, eyes. Any time I casually mentioned anything neurological, “likely part of the colitis”, and even though a neurologist saw “white lesions” on an incidental MRI, he told me they might or might not be significant, and fecked off with himself to another hospital and sub-speciality.

Re Baclofen, I hear it spoken about for spasticity and spasms, but how do you get it prescribed? And what are the side effects? I’d be afraid of anything making my muscles even weaker. They are shockingly weak as they are. Will be attending my GP on Friday, but he can be quite cynical at times of prescribing things. Mind you he didn’t help at all in getting me neuro attention in the first place and is perplexed at how I’ve gone so poor on mobility so very quickly.

As regards my own experience, attempts to exercise my muscles, eg do leg raises, results in immediate severe muscle spasms. Everyone knows what leg calf cramps are like as they are common in people with zero issues, but in MS these same type of cramps also occur in thighs, abdominal, chest muscles, feet, hands etc, sometimes multiple muscles going into spasm at any one time. When Prof Tubridy made his initial assessment of me he asked me to demonstrate a leg raise, immediately my thigh and abdominal muscles went to sharp spasm and I was automatically catapulted into an upright position; he told me not to even try doing stuff like that as it was very clear I’m not able. I hate the way the disease robs you of so much capability of exercising, which is so good for mental health.

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.