MS in all its glory

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!

The way I have to get up in my own place is by crawling to my bed after I regain sone movement in my limbs and pulling myself into it, recovering for some hours and slowly attempting to get up from there. When I fall I tend to lose all feeling for a while, like as if I’ve broken my spine. I think it might be connected with the necrotic fluid filled lesion and shift of spinal fluid compressing the cord. People who observed me having a fall said I went into a convulsion immediately and wasn’t responding to questions and making no sense for a while.

Went to Nutgrove this afternoon. I’ve enough feel in legs when I sit down to drive, but when I stand up almost all the feeling has gone out of my legs, and even with the rollator it’s very hard to keep myself upright at all as there’s tremendous weakness into my arms, especially when standing. I’m a shaking mess. A 75 year old disabled lady came to my aid at the shops and a I met a 88 year old man, who is a neighbour, he is very alarmed at how I’ve suddenly turned and said I don’t look well and should get attention.

However, I’m scheduled for a esophago-gastro-duodenoscopy tomorrow evening in the Beacon. Want to get that done with. I know something’s very wrong, but not sure what exactly is up.

I got advice to contact MS nurse team re symptoms, but seems they are unstaffed and overworked, don’t think I’m gonna get anywhere this way.

This is awful. Imagine losing total sight in one eye and no cop on when it happened! Some neurologists are great as long as you tell them what your diagnosis probably is. 🤷‍♀️

Conductive fog is horrendous, I’ve been getting them to an immense degree over past year, some times much worse than others. I said it to Prof Tubridy. His answer was that unfortunately it doesn’t respond to any one therapy in particular.

I know I couldn’t hold down any kind of a job now, in spite of my innate intelligence and creativity. I could stare at something for hours on end and wonder what I’m staring at and why and what I was originally intending to do. All I can do is offer my greatest empathy. 🥲

If people have tricks I’d love to know them myself. Maybe swimming in the cold sea would wake me up, but I think I’d drown first! And I couldn’t get in and out of the sea! I feel myself if I were better able to exercise I’d be somewhat better in my cognition 🧐

I got a return email from the MS Nurse. She had looked at my file, says there’s a huge amount of very established old damage and not surprising I could tip over like that, and suggested it is highly likely to be a coincidental infection somewhere in my body triggering it. Indeed I think a tooth needs to come out, I meant to have this attended to before Christmas but I had got Covid, pneumonia, then Mexico, then kind of went into the background, but can still notice jabs of pain from it. The upcoming MRI will tell if there’s additional new lesions.

It’s so ironic that I built up so much pathology in plain sight of numerous physicians I attended for various things.

Does anybody keep a CD copy of their own MRIs. Got scan today and requested copy, which I’ll look at later out of curiosity. SVUH PhD AI Radiology researchers Brendan Kelly, a thoroughly nice individual, said at the last MS seminar in Athlone that it was a really good idea to try and keep your own copies.

As Prof Tubridy wants me to be clear of HPV before treatment, I did a home test with a lab company called “Let’s Get Checked” and alas it came back again positive for HPV type 16, a highly pathogenic one. Colposcopy won’t work because of location of cervix (uterus is located back against spine by adhesions) so in effect to keep me safe I ideally need a very complicated hysterectomy. That should have been done at time of colectomy. Even without the immune suppression of MS treatment the virus could cause cancer.

As the repeat HPV test showed I continue to have the cervical cancer causing variant 16, I knew my choices were limited. Attended GP today, he agreed I need that hysterectomy which would be especially complex owing to the mass of adhesions from previous previous colectomy and the location of uterus attached to my spine. He has sent a request to the highly specialised surgeon to carry it out. It should have ideally been removed at same time as colectomy back in 2016 to prevent this very type of issue. Anyway I’m perpetually jinxed, so quel surprise 🤣

The voodoo doll has had another pin stuck in.

I’m keeping my apartment warm, and in the icy weather I never venture out, not the windy weather. I’d be frozen to the spot, in moveable.

In the very funny Liveline thread in the Radio forum there’s a rule that goes if a Boardsie gets in air they have to mention to Joe about his bad leg. That’s the code word for being a thread follower. One of us got on air and asked Joe “How’s your leg?” “How’s me whaaa?” He replied. The thread went wild. So I always smile at the term “bad leg”.

I got onto Liveline 4 times, last time focussed on bad legs, much to amusement of the thread. Harmless bit of fun to relieve stressful situations.

The cold sends me immobile, the heat does too. I’m like a delicate plant that requires just the right temperature to function.

Temperature is notorious for disturbing nerve function in MS.,

Attended the specialist surgeon who, although very nice about it, didn’t mince his words. The surgery would carry a significant risk of mortality, it would be a dangerous surgery, but if it means I could be saved from impending severe disability by being able to get MS treatment he would do it. As it is I cannot be monitored for ongoing cervical cancer risk because of changes in anatomy caused by previous surgery, so that risk is outstanding with or without MS treatment. However with MS treatment that risk is much increased.

To undergo this surgery it would very likely mean a fair time in ICU on a ventilator perhaps undergoing multiple operations to pack my insides to try and stop bleeding, multiple transfusions, and a very prolonged recovery time. Risk of causing kidney damage, intestinal damage, bladder damage, could end up with an extra stoma, never being able to have normal physical relations again.

He is going to issue with Prof Tubridy as well as the surgeon who performed my colectomy and my GP to discuss risk v benefit analysis, put it to me, and then let me have the final decision based on that. This dilemma could have actually been prevented had the surgeon who performed the colectomy performed a hysterectomy at the same time, as I was past reproductive time. ¯\_(ツ)_/¯

The most basic of tasks can be a nightmare. Today I have lost almost all feeling below the knees my feet kept tripping me up even holding onto the supermarket trolley. Getting things out of the trolley onto the belt at checkout is another issue as my arms and hands have lost so much strength and dexterity. My fingers can hardly feel what they are attempting to do.

I don’t see myself getting treatment because it would require very risky surgery to reduce my gynaecologist cancer risk, which the expert surgeon says would carry a significant risk of bleeding to death on the operating table no matter how careful he would be.

Yet I’m going downhill rather quickly, and can’t see myself holding my independence that much longer. It’s really difficult living alone, but I do hugely value my independence.

I get the most peculiar of looks when I very suddenly start to wobble involuntarily if someone ones serenely comes within touching distance of me. Haven’t heard it described elsewhere but I start staggering all over the place, it’s embarrassing, and the looks I get as it takes onlookers by surprise. I think it is simply related to postural/truncal ataxia.

I dread when I see children racing blindly towards me, I have a terror of falling over onto the pavement and being unable to get up without the most massive fuss, as it would take two strong people to get me upright and I’d be wobbly all over. It would likely result in someone insisting on getting an ambulance as if an internal wait in an A&E is going to do anyone any good unless there’s been a significant injury that needs a scan or something.,

It is a bit experimental and only feasible in limited cases.

Got the lightweight power chair delivered today, it can build up some speed on the demo!

This outlines one of the studies regarding Gabapentin and MS, regarding spasticity. Since taking it for Restless Legs Syndrome I realise the sheer amount of muscle spasticity I had without the med. At times I could barely move a muscle, completely freer now in movement. And the slight jelliness of my legs is rather better than having them refusing to move when commanded. So I have no more restless twitching cramping limbs, I feel way more relaxed and much clearer in thought. For me 300mg is the effective dose, but it would be somewhat different for everyone, and as always one must work with the doctor. My eye muscles are better too, meaning I have better vision and can suppress any distracting double vision.