MS in all its glory

tohaltuwi · 14-05-2024 1:17pm

I won’t give details here yet, but am involved in a project for World MS day. Will post links as stuff happens 😉😊

tohaltuwi · 18-05-2024 5:57pm

Spent past several days on the Outer Hebrides, was in great shape on day 1, swimming in the beautiful sea at Berneray. Past couple of days started getting tired and unfocussed. Flew from the islands to Glasgow yesterday, planning to see some galleries & museums. My MS had other ideas, this morning I couldn’t even leave the room to go down to breakfast, feet hardly working at all, I’m extremely tired and feeling very confused. Almost as bad as the time recently that landed me in hospital. Nothing to do but stay in bed all day, and take some antibiotics I have for an emergency. I’ve been having the night cough again and flat beds do me no good at all with reflux. I suspect some gastric contents have got into lungs again stirring it all up. At least at home I can raise the end of my bed.

tohaltuwi · 21-05-2024 5:17pm

the World MS Day project is coming along nicely 🤫 times & places being arranged. 😁

tohaltuwi · 23-05-2024 11:10am

https://worldmsday.org/

#WorldMSDay #MyMSDiagnosis

This years theme is My MS Diagnosis. A project run by MS Ireland and sponsored by Novartis involves 6 MS patients in Ireland acting as “spokespersons”. We have each written a short open letter which will be displayed in St Stephen’s Green Shopping Centre in Dublin on 28th May, just ahead of World MS Day 30th May.

Yesterday I was interviewed by Irish Independent Health Correspondent Eilish O’Regan, and an article will be featured in due course. Arrangements are being made for broadcast interviews.

Lots of info on activities and information sessions on MS Ireland’s website.

https://www.ms-society.ie/

tohaltuwi · 25-05-2024 11:37am

https://www.independent.ie/irish-news/i-had-warning-signs-for-decades-but-was-dismissed-by-doctors-retired-librarian-on-finally-getting-her-multiple-sclerosis-diagnosis/a1987616392.html

the Indo article 😊

Edit- full edition archived here;

https://archive.md/2024.05.25-094407/https%3A//m.independent.ie/irish-news/i-had-warning-signs-for-decades-but-was-dismissed-by-doctors-retired-librarian-on-finally-getting-her-multiple-sclerosis-diagnosis/a1987616392.html

tohaltuwi · 25-05-2024 7:54pm

https://msmartinecom.wordpress.com/2024/05/24/world-ms-day-2024-ms-ireland/

Pasting everything into my blog as I get links.

gamerguy1 · 26-05-2024 12:33pm

Well done getting it on the newspaper ahead of world ms day. Similar story to alot of us, blaming it on other things before getting diagnosed.

tohaltuwi · 27-05-2024 4:00pm

https://www.boards.ie/discussion/comment/122185265#Comment_122185265

I showed it to the specialised gynae surgeon who has agreed to perform the very difficult hysterectomy that might enable me to get MS treatment. My persistent HPV 16 status, along with the impossibility for cervix to be monitored by colposcopy means that treatment would put me at an unacceptable risk for cervical cancer. That surgeon was and is horrified at the disconnects in medicine in this country. I will have it done in the Beacon, but he also works publicly in St James’ doing some of the most complex cancer cases in this country and is credited with being one of the top few such in Europe.

I go to SVUH on 5th June and the surgeon asked me to get the Prof to send him updated info so that all can be on board. Then I have to sign consents, including to be kept in an induced coma for several days or as necessary, and plan a suitable date. Want to get to Borneo in early August first, I don’t want to let my friend down.

I’m sure the article may have confused one or two people as to what kind of surgery could be used “to treat MS”, but it is such an outlying case and one which even confuses uninitiated doctors, that to explain in the article would have derailed its primary intention, to put it to doctors to investigate properly for MS when concerns are raised.

tohaltuwi · 27-05-2024 4:06pm

A couple of days ago woke up to put my feet on the ground and find left leg almost totally numb from foot up through to my torso, and it was very reluctant to bear weight or move, so had to walk very gingerly, stick in hand, and swinging numb leg out. At one point I fell sideways & rearwards, fortunately something digging vaguely into my thigh stopped a complete fall or I would not have been able to get up off the floor.

Today the feeling started to return a bit and I noticed two things, a painful gash in my thigh, and a sprained ankle, neither of which I could feel before. I must have sprained it trying to make it support my weight.