MS in all its glory

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.

I sent an email to Blackrock questioning why I didn’t get contrast when Prof Tubridy had very specifically requested it. They responded in some detail, and explain they consider it unnecessary and potentially toxic, and that they don’t care who requests it, they won’t do it, however they will repeat if he comes back to them insisting on it.

They said in a long email from the clinical MRI specialist that it builds up in body and causes long term damage… I’ll get a screenshot of the conclusion paragraph…

I know my doc is going to request it be repeated with the contrast, at least this one time of not so much down the road. I think it might be riskier for people to undergo gadolinium injection for years on end. I’m 62 and this will be my first and maybe only injection with it as protocol to commence me on treatment.

I have less than perfect kidney function, it’s ok, but maybe they see that the contrast is better avoided in my case if possible.

This explains the dangers of gadolinium contrast agent, shouldn’t be used routinely.

Wishing to attend the MS Conference in September in Athlone on Sat 16th September, I phone the Radisson quoting MS Ireland booking rates. Alas the only 6 accessible rooms were not available to me and I was told by the very sympathetic nice girl on reception that sadly nothing at all was available for my stay. She had said MS Ireland booked the rooms for Thursday and Friday but strangely not Saturday, when the seminars and gala dinner would take place.

All the rooms are bath only, no walk-in shower, except for those 6. We are a strange country where many of our hotels are focussed on baths only. It’s been sone time since I’ve been able to safely get out of a bath, and there’s no possibility of that now, though I’m only 62. There’s plenty of people, young and old, can’t easily use baths. Actually if you use a simple B&B you are more likely to have a shower and at most a short doable stairs or maybe on ground level.

Anyway I got back online and managed to book a room with inaccessible bath for the two nights at a costly price, but at least I get to attend. I will bring flannels to wash myself.

The lack of accessibility in major modern hotels drives me mad. I formerly brought my late elderly mother, a wheelchair user, all over Europe, New York etc, never had a problem with accessibility. That was back to 2009 when she died after a short illness aged 89, her last foreign trip to Switzerland where an old city building had been converted to be fully accessible.

Got follow up appt at SVUH MS Clinic for 29th November, have to have the endometrial hyperplasia fully investigated & treated ahead of that. It’s put a spanner in the works as they cannot give any form of immune suppression without eliminating as far as possible the question mark over potential underlying malignancy, even a low grade smouldering carcinoma could turn into invasive cancer if immune system is suppressed.

I’m living on my own, very much a one-person operation, although very sympathetic cousins & friends. Yesterday I was greying out all the time, BP plummeting by 55 systolic immediately upon standing up, and my GP can only advise me to rise slowly, but that doesn’t help as it pretty much always goes to grey out on a minute or two anyway. Last night I was getting chest pain in addition, just a vague pressure in chest now.

Hate presenting to ED, you need to be at the top of your form to cope with that 🤣🤣 Years ago I’d be given a trolley when the gut issues arose, now anyone under 80, now matter in what pain, gets turfed off ambulance trolley to a hard chair to wait 8 hours. The trolleys are all occupied by people in the 90s at the end of their lives, that’s the reality of us all living longer and not having enough facilities to cope.

Plans to start treatment in November have kind of been scuppered. Later this month I have to get biopsied for potential cervical cancer as MRI & the HPV tests combined through up suspicions. Easy enough to treat early cancer with a hysterectomy as it is a slow grower and takes its time to be invasive. But on a visit to ED when I was very dizzy and had chest pressure/pain, the doctor ruled out acute heart issue via no raised troponin, but he did remark at the extreme variation in BP, and not so great kidney function, and told me to go back to my GP and ask him to order an echocardiogram with follow up by a cardiologist, as only that way could a chronic heart issue be thrown up. He agreed that Dysautonomia is part of it, but suspected there might also be an issue with my heart itself playing a role.

The Gynae team asked for a copy of the echo report, and of course I need it for the MS Clinic later, so I asked the Beacon to send me & my GP copies of the report sooner than I get to see the cardiologist. Have had normal echos before, done for a different reason, but when I opened the envelope my heart sank at the list of defects which would account somewhat for my tendency to black out. Valve stuff can be fixed satisfactorily if not too much remodelling with scar tissue has taken place. Seems I might have had rheumatic fever or an immune process doing a little bit of damage. Have posted copies of the report, but I’m afraid they will baulk at giving me Ocrevus as your heart needs to be in decent shape for that. So many obstacles, one after the next.

Had to cancel going on a short holiday break due to another autonomic vagus nerve issue. Developed severe gastroparesis with some ileus over past few days, bile building up in throat and causing havoc, inducing a respiratory asthmatic reaction too. Have had a couple of episodes in the past, but autonomic issues are difficult to deal deal.

Well I’m a woman as per photo, always sit down (but stand up to empty ileostomy bag), but I learned yesterday after undergoing attempted hysteroscopy, that my uterus is tethered by adhesions to my bladder, might have a lot to do with it. SVUH Day Surgery gives the most amazing care.

I believe that’s not at all uncommon even in guys without MS etc. They had a demo table in the Radisson Athlone at the MS Conference last weekend as to how bladder can be drained when it doesn’t happen by volition. Easier in the ladies of course. Some of the gals wanted this for sheer convenience at concerts to avoid fitting on unhygienic toilets ! 🤣