MS in all its glory

Underwent a hysteroscopy last Friday 22nd Sep, to inspect for potential cancer, but they were unable to complete procedure as they found uterus tethered forward in top of bladder from several previous surgeries/infections.

Next day at home began to experience severe & sudden left lower pain, together with shaking rigors and temp over 40C

Discharged now on antibiotics but warned about probable recurrences, it that surgery would be technically extreme difficult due to previous multiple surgeries.

As long as I have an underlying uterus which could harbour infection, the more I cannot undergo immune suppressive treatment. All hinges on major gynae de idioms now.

I do need a hysterectomy. Oh wow! I do get cog fog, moments or days when I can’t think of anything let alone straight. Other times I semi to have amplified sharpness which caused me great delight! 😁😁😁

I’m seeking a further consultation with another gynaecologist re the possibility of having a hysterectomy don’t privately, the reason being I’ve been told this absences can get chronic and recur in acute episodes. It is not compatible with MS treatment or any immune suppression, so I’m stuck in a limbo of sickness. Technically, the surgery would take hours of peeling away adhesions, replacing lost blood (adhesions being highly vascular), trying to mop up infection left behind. It would mean an ICU bed had to be available as there’d be a 50% chance I’d need it for first couple of days, and the public hospital would inevitably tend to keep cancelling the procedure until absolutely forced to do it when I’d be in the verge of sepsis. Apparently post-op infection in these cases is almost inevitable so I could reckon on a couple of weeks inpatient stay. I’ve been here before with bowel operations, but eventually you do come right, and I’ve made spectacularly good recoveries once infection is cleared. After the very complicated panproctocolectomy with ileostomy , as soon as all infection was cleared I was off to Antarctica and swimming in seas 2C!

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.