MS in all its glory

It’s shocking g how quick it can encroach. I’ve been unsteady coming down steps or on uneven surfaces a long time, but kept on kind of making excuses and trying to convince myself things weren’t really as they were as sometimes I could walk pretty fast on the flat, at times whizzing about. But show me a downhill or even two downward steps without a rail and somehow I couldn’t really do it. I didn’t bother even mentioning it to GP as he would have shrugged his shoulders., and a best repeat B12 blood tests would be done.

I identify with so so so so much of that!!! I forking thought I was going insane!!!

I was told by Prof Tubridy I could contact her, but I’m never quite sure of when to do that. But sure I was never quite sure to mention neuro symptoms for decades as the odd time I mentioned them they were dismissed and you learn to keep your mouth shut at the doctors lest you are considered hysterical (in a clinical sense).

For a non-MS related reason I asked for a copy of my medical records from SVUH, wanted to see gynae record. Arrived yesterday in a flimsy torn envelope, the pages visible to the postman. Dreadful the way they put private info into such trashy envelopes.

I did get to Prof Tubridy’s report of my ataxic gait and appearance of longstanding disease. The bloods he ordered are clear of non-MS neuro pathology, by a specific B cell ratio with another finding is consistent with active disease, and I can certainly feel it. On foot of this he will likely start me on Ocrevus in the new year, but only if I can clear the HPV. Men don’t get tested for HPV at all even though it can cause anal and penile cancers, but I think cervical cancer is a fair bit more commonplace.

Any attempt to exercise has “payment” for me and I think this is very typical. Often my muscles go into fierce spasms at attempts for muscle strength building, and after doing a lot of hobbling mileage on a good day results in me being almost bedridden the following day.

Because my muscles are weak they are not holding my joints up well and I’m inclined to get sprains/arthritis, again I believe this is very common. I had a left knee replacement in my 50s, not realising a lot of neuro symptoms were unrecognised MS. The recovery was very slow and difficult and the surgeon went in about how I wasn’t putting in enough effort, when I was in fact doing everything I could do. My right knee is now grumbling, but I’m not going to have it touched as I’d be unable for the requisite post-operative exercise.

The first part of this fascinating article focuses on cancer, the second part of MS and the theorised cause. The authors are credible and have been recognised for their work on the human papilloma virus as the cause for most cases of cervical cancer. Well worth a read. In my own case my mother was unable to breastfeed me and I was given cow’s milk to which I reacted very badly and was in a paediatric hospital to treat severe symptoms and my mother was instructed not to give me any ordinary milk in my diet. It’s interesting to see the possibilities as to how I got both MS and Ulcerative Colitis.

When people ask what MS feels like to have, I always say it can be simulated if you really want to know.

A good starting point would be to tie two different weights on each angle, and on wrists, to simulate the irregular heaviness and muscle weakness. Put strong bandages around each ankle so that the joints can barely move. A pair of surgical stockings, or better still two pairs on a least one leg to simulate uneven tightness of calf muscles. A tens machine or two on various parts to simulate pins and needles, some itching power, a good blurring gel in one eye, make sure to fill the bladder full til it starts leaking, cross both legs tight till they are numb with pins and needles, then try to walk on them. Compress elbows to cause pins and needles in hands, get lots of numbing dental gel for mouth, don’t sleep for 36 hours to simulate the lack of focus and exhaustion, and take maximum dose of Imodium to simulate bowel problems (although I have ileostomy), make sure to do all or many of these things at same time to give the best lived experience.

*** I do not actually recommend using tight bandages that may cut off circulation, creating hazards that might cause you to fall, or taking inappropriate medication. But you get the general idea. 😁

This morning woke up unable to get out of bed, my right leg kept going from under me. It was bad yesterday, almost fell several times in Dundrum, and had a failed attempt to get to next floor, long story. Dragged my way to living room now where I have a rollater on standby, now have to use it to get around apartment. I’ve a horrible tremor all over and my hands will barely function. It really has me very frightened, especially that I live alone.

Now I have bad double vision. I’ve always had strabismus but could suppress the second image, can’t do so at the moment. It adds to my overall dysfunction & coordination. If all this continues I’ll be heading into a home for the bewildered pretty soon. Hate the thought of being fed and washed etc 😣

Interesting that this drug is under review for potential remyelination capabilities. 🧐

Just got letter for a non-contrast MRI at Blackrock in two weeks, as Prof Tubridy says it’s very difficult to get to my ones in SVUH, and seeing as I have VHI I’m fully covered at Blackrock. I see on the letter it is specifically a cervical spinal one, must be because I have a syrinx lesion thereabouts that could cause paralysis if it expands 🧐 I’ve had 2 brain & spine MRIs already this year. Prof Tubridy always wants contrast but Blackrock have a non-contrast policy as they hold it can build up in the brain and potentially lead to complications over the long term.