MS in all its glory

My place at home is like a furnace, big south facing window in living room. All prickly, nothing working, tetchy, brain fog, frustrated. Very hard to get out of bed tbh.

I could not believe when I opened a letter today from SVUH telling me I was being given, in terms of neurology, a prompt appointment very same morning in July as I have a private appointment with Prof Hardiman in Beaumont. I haven’t mastered the art of bilocation yet, but I’m being advised by friends and relatives to go for the public one and cancel the appt with Prof Hardiman. Any thoughts?

Had a bad fall at my own apartment jetty at weekend, aided by wine of course. Ordinarily I would have no excess effects like that after similar before recent developments. After coming home from shopping this evening, didn’t feet today, both feet stuck badly together with bilateral foot drop, nearly went tumbling again. I have ordered two splints for myself. This disease is scaring the sh1te out of me.

I’ve just returned from a week trip to Thailand. Having requested wheelchair assistance I was treated very well throughout, with a bid to Etihad booking, I was able to upgrade in 3 of the 4 legs. Thailand is very good good value for money as far as we are concerned! Food splendid!

Had to transit Dublin -Abu Dhabi - Dublin. Private transfer to resort. 2-/ treated splendidly there. Everyone local got friendly with me, the wobbly woman on the clacking stick.

Back in Ireland for a day, I woke up to almost the worst my mobility has ever been. I have developed acted it all over and knocking and dropping things from my appallingly clumsy hands, clenching spasms all over my torso, double-vision, balance all over the place and feels like I’m walking on newly acquired prosthetic legs. I could draw my progression on a graph. I go sharply downhill, improve very slight, plateau a little bit at the new lowers mobility and the slightly jagged cycle continues. Cognitive issues are huge today, can’t remember what I am intended to do 2 seconds before, I almost put CBD oil in my eyes in error, instead of lubricating eye drops recommended by optometrist.

Attending SVUH neuro clinic for first time on Wednesday morning, I am bracing myself for the question: “what’s your worst issue?” Like where do I begin.

Yes, the great phenomenon of being in best shape ever when visiting the doctor or the dental visit where the toothache has disappeared! Years ago when I had the colitis I made a couple of visits to a gastroenterologist for my ulcerative colitis. Didn’t take to him at all, and he would say “I don’t think you’ve much to be concerned about”. Very shortly after my last ever visit to him I became very sick with internal bleeding, attended another private hospital where I was admitted, re-scoped and told by new consultant there I had a huge amount of high grade inflammation & damage throughout my colon and that I needed a lot of follow-up. From my hospital bed I emailed the previous consultant who had way underestimated my condition, he said he was genuinely sorry to have missed it. But he was never really enthused by his job as far as I could see, daddy had been a doctor too I heard, so probably pushed into it to some extent. A few years later I underwent a colectomy/ileostomy.

I do have a list of symptoms, reads like an encyclopaedia of MS symptoms. The prof will have fallen asleep by the time he scans it. 🤣

Attended SVUH MS clinic first time ever this morning, met the good professor who is pulling out all the stops to get me on Ocrevus ASAP. He thought it was remarkable and totally unacceptable that I could have reached this stage without having had any attempt at medical intervention. Had 15 blood samples, ECG, to get fast tracked contrast MRIs, chest CT, & smear test in preparation for being put on the drug for SPMS.

Professor Tubs, he wasted no time in starting action, was very focussed on my case. He wondered why I didn’t actively seek neuro attention when younger and having those RR episodes, but as I said when you are getting internal bleeding etc from colitis, cardiac issues, flesh-eating disorder, they kind of take centre stage, and any little mumblings I made about foot dragging and hand going into spasms etc were overlooked as irrelevant. I was once told I had optic neuritis after pain moving eye and blurry vision but they thought that must be part of the colitis, which caused multiple other complications.

Today when he examined me he asked me, lying on examining table, to lift each leg and immediately my thigh muscles went into a massive spasm and I nearly kicked him. He said it’s pretty patently obvious what’s wrong, but he said it in a way that really validated all the things that have been happening me.

Just got a phone call from Blackrock, Prof Tubs asked them to fit me in as quickly as possible for contact MRIs and chest CT, so they have called me in this Sunday evening of all times. Everything is happening so fast now, I can’t believe it.

Getting an awful lot of spasms on my hands, more particularly in my left hand, eg of I even attempt to pick up likes of a kettle it will lock painfully and unpredictably, and the only thing for it is to manually straighten my fingers with my right hand. More disturbingly it was verging that way on the steering wheel of my car this afternoon, and I had to make sure to keep it flat against the wheel. The steering is light in my car, and I am likely to have to give up driving at some stage, before it gets hazardous. As it is I will only drive on my better days, and for appointments etc I book taxis.

All my muscles are tending to spasm lately, including chest and abdominal muscles, which I interpret as the so-called “MS hug”. The abdominal spasms most often happen when I attempt to get up from a sitting position. I get foot cramps too, and bilateral calf cramps, and on sone occasions thigh cramps.

Had anyone found any particular remedy good, or might side-effects be worse than the muscle cramps?

I will get discussing this with the neuro team at some stage soon, but they are focussing on getting me started on Ocrevus asap.

Getting up after a fall is so difficult. I have fainted sometimes (had a seizure after fainting too) and had to be carried to bed and unable to move for half a day. Yesterday I nearly fell head first onto the balcony when going to water the plants. I’ve heard about Baclofen, but I’m only new to the system, so the Prof was all for us on putting the foot on the pedal to get disease modifying therapy. Decades of symptoms were ignored, a lot my fault because I didn’t put enough emphasis on them, but I was going through other major stuff, internal bleeding, cardiac stuff, some of it life threatening, so a numb dragging foot takes back seat.

Falling is terrifying, especially when you are on your own. My first major fall that heralded in the abrupt onset of my current progressive disease was early March. I had been in Dundrum SC that day and was finding it difficult to use the escalators and nearly took a toss on one of them. Kind of wondered was I imagining my balance had suddenly gone really pear-shaped.

Was wobbly rest of day, couldn’t really figure out why, was a bit worried though, in fact quite concerned. What was I to do about it? Who was I to say it do? What could I do about it?

In the evening I sat down, had a takeaway, a glass of wine, watched TV, trying to forget about the day I had and my underlying suspicions. Seemed fine, got up to go to bed, next thing saw floor coming up to meet my face, heard a great big crack, and then nothing, blankness. I became conscious again, like waking up after surgery, and realised I’d had a fall & blackout. Tried to move my hands and legs, couldn’t even move a finger. Thought I must have broken my neck and become paralysed and that was going to be the end of me. I had no feeling anywhere.

After some time passed, I tried moving my limbs again and I could moving them but not usefully to get myself up. Still, I knew my spinal cord was at least intact and that rest might help and I decided I had hope if I just relaxed for a while and get some power back. After an hour or two I had enough power to crawl to the bedroom, and saw I had left a considerable large complex bloodstain the exact shape of Donegal, it’s peninsulas and islands 🤣

After a good sleep I got myself to Blackrock ED, as I had the insurance, and there had been numerous warnings broadcast to keep away from public EDs. It was crazy busy in Blackrock, and as I was extremely unsteady, dropping things, and having very bad double vision, they admitted me, but end result was they couldn’t follow me up. General consultant said I’d be better off at SVUH but he hadn’t the ability to refer me there and I’d have to go through my GP, and the latter did not know how to use Neurolink to connect with Prof Tubridy, in fact he said he couldn’t see a method of referring me, but I could go private somewhere else.

Long shot was I got GP to print a referral and I sent it in registered post and got to see the Prof that way.

But those falls can be multi factorial, I’ve had my foot catching numerous times, legs simply giving way, and had a few episodes of fainting which has been identified as my nervous system being unable to regulate blood pressure mostly either when I stand up or am standing in one place for a while. The drop in BP is a rapid 20+ systolic so no surprise at my blacking out occasionally.