MS in all its glory

tohaltuwi

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

tohaltuwi

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

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

tohaltuwi

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

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

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

Pasting everything into my blog as I get links.

gamerguy1

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

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

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.

tohaltuwi

https://msmartinecom.wordpress.com/2024/05/28/i-just-fell-sideways-and-urinated-myself/?preview=true&preview_id=579&preview_nonce=eebe509322

this evening 😫

tohaltuwi

😃😃

tohaltuwi

”Happy” World MS Day, today 30th May, to all affected. hoping everybody has some little thing to celebrate!

I would argue with the statement “we assure you it does not need to dictate your life”.

tohaltuwi

great bit of craic and minor “controversy” re answers to the Pub Quiz in the Goat 🤣 organised for World MS Day

cj maxx

^^^^^

Just on having MS symptoms from early years , I’ ALWAYS had a weaker right side . Symptoms like leg tenors if I held my leg on the ball of my foot , erratic writing at times ever since 9 or ten . I was so stupid I thought I must be left handed . But in the ‘70’s there were no MRI’s or anything to test me . When I finally had one the damage was very old , and thankfully the last time I had one no spread even though disability has gotten worse . The Neurologist ignored me but I ,now , knowing the symptoms I’ve had MS all my life . A relapse , when I was 4 or so led to a week in a Dublin hospital . I remember it well , going up in the ambulance and the driver putting on the siren , just to beat traffic and give me a laugh . And playing with the other kids . All ifs and buts about if I had treatment then , but no point in looking back .

tohaltuwi

https://www.boards.ie/discussion/comment/122215445#Comment_122215445

I do believe all this starts in early childhood or even in utero. I was born with divergent eyes and when I walked always inclined to fall over on my left side.

tohaltuwi

I am reeling after a visit to SVUH clinic this morning. Saw a different neuro, very nice lady. She was very patient with me as I reacted to the frustration of hearing they haven’t got one single image from the 4 MRIs I got over the past year, only short reports of “lesions present”. I was annoyed over why this was let happen, why wasn’t it chased up, why am I left in the same place a year later with overall progressing symptoms.

She told me I am one of a significant cohort of neuro patients who is the victim of poor communication protocols between hospitals, and how very sorry she was. She explained what happens in practice. When an MRI image series appears on file the Team (Prof Tubridy, neurologists, registrars, radiologists, nurse) are alerted to confer and formulate a report. If no MRI series arrives on file this doesn’t happen. It’s as simple as that. Images taken at SVUH get automatically into the file, but it can take a months to a year to get an MRI done there in the first place.

Prof Tubridy had ordered my MRIs to be done in Blackrock to circumvent the delay, but it ended up that the reports never reached by file in SVUH. There is no trigger in place to alert that requested outside hospital images have not reached patients’ SVUH files.
¯\_(ツ)_/¯

cj maxx

it was 5 years approx from my GP referral to actually see a neurologist for diagnosis . It can’t be rushed as so many things are possible . See DR Watt in the North for rushing

tohaltuwi

but they keep emphasising now “we must diagnose early to start treatment early to stop damage”. I saw two patients there this morning with what I would describe as almost locked-in syndrome, unable to speak and having to be wheeled. They either didn’t get timely treatment or didn’t respond. On other visits I have seen mainly young people bouncing around, obviously diagnosed early. There ought not to be such huge differentiation, although I do know some forms are more aggressive. But I can’t help thinking delays help nobody and the excuse for the delay is purely administrative and p1ss poor IT systems and has nothing to do with clinical presentation etc.

cj maxx

I was 40 when diagnosed and could still walk , though with the amount of times Gardaí and bouncers spoke to me , obviously I was unsteady . I remember when the neurologist asked my to close my eyes when standing. I was very hesitant until he made sure I wouldn’t fall .

byhookorbycrook

Those diagnosed over 20 years ago only had access to the CRAB (crappy) injections . When Tysabri appeared , it was not allowed as a first line treatment and was removed from the market due to PML concerns for a while . The older patients in my infusion centre missed the benefits of the more effective DMD early on and that damage is biting back for many of us.

I've seen and heard of those diagnosed a few years cancelling their Tysabri infusions for the most flimsy of excuses and it amazes me that they would. Of my infusion cohort, I'm probably on the more progressed side of the curve, so they've not seen the people in wheelchairs/on walkers/ wall walking .

cj maxx

I signed up to Avonex because it was once week . I might as will been on nothing imo .

tohaltuwi

https://www.bbc.com/news/articles/c1wwdd6v2wjo.amp

I had Ulcerative Colitis until getting my entire colon removed, appendix to anus all out, stitched closed down below. Ileostomy formed from end of small bowel, wear a bag. There’s a small area on a gene causing Macrophages to act against harmless bacteria as well as pathogenic ones such as E Coli and break down the tissues of the intestines leading g to bleeding, cramps, diarrhoea, toxic symptoms, adhesions, bowel blockages, reactive arthritis, pyoderma gangrenosum full depth skin break-down, eye inflammation. Had all those symptoms , hence I went for the Panproctocolectomy with End Ileostomy.

A cohort of people with IBD go on to develop MS, which involves Macrophages. I believe in my case they are closely connected. A certain cohort of people with IBD, MS or both have developed it in the scenario of mother having been prescribed a banned drug (much in the way of thalidomide) Diethylstilbestrol (DES) in the mistaken belief that it helped prevent miscarriages.

tohaltuwi

I was on Humira for several years to treat the colitis, and now I see this…

https://www.medicalnewstoday.com/articles/drugs-humira-side-effects

https://www.aboutlawsuits.com/humira-179/

https://www.millerandzois.com/products-liability/drugs/other-drug-cases/humira/

I know Americans take law suits at the drop of a hat, but it goes to show that it has been demonstrated that in some cases Humira (Adalimumab) has been associated with demyelination.

I had symptoms before taking this drug, but perhaps taking it did me no favours. One of several reasons I had the colectomy was to be off unnecessary immune suppression.

gamerguy1

Was diagnosed many years ago and was on copaxone,every day injection, which was ok at the time. Got a couple of bad relapses but didn't get put on tysabri until a few years ago. The damage that was done then is hitting me for the last 2 years. Was diagnosed when I was 30, it took 2 weeks in hospital to find it. MRIs showed nothing. It was the lumbar puncture that found the oc bands in the spinal fluid that made it definitive.

tohaltuwi

https://www.boards.ie/discussion/comment/122236008#Comment_122236008

I have had symptoms for decades, was in hospital for 2 weeks last year after collapsing in a pool of blood at home. Let out undiagnosed except “likely ms” and told to go back to my GP.

Last Wednesday attended SVUH MS Clinic for 3rd time to be told they had NONE of my scans available to them to review and that I was back to step one. Ordered a new one which I will have shortly. Have now ordered all copies of my 4 scan series on CD from Blackrock to be posted to me, for me to hand deliver to SVUH. However I just got notification that next appointment for SVUH MS Clinic is 16th October. They saw how very upset I am over it all and suggested nicely I see a shrink to deal with my emotions. I was led up the garden path in the belief they had accessed my scans. I am angry beyond belief at how I am literally physically crumbling in a progressive way without any help whatsoever.

Orla Hardiman had originally offered me a private appointment at Beaumont, I turned it down because it coincided exactly with very first public appointment at SVUH and I live quite near there. I’m thinking seriously of re-approaching Prof Hardiman for a private appointment.

tohaltuwi

At last, got 2 DVD copies of all my MRI direct from clinic!! Plus reports.

Latest comparison shows stable lesions, periventricular and nowhere else. Had a look at them on my PC and even before reading the report noted they are almost identical, just a bit more tightened on more recent one evidencing probable scarring. The evolution of lesions, I read, is they can fade as they scar up and brain shrinks. It’s damage already done.

tohaltuwi

Met my caseworker this morning, who is absolutely astounded by missing MRIs issue at SVUH and they are raising it up a level.

In meantime Ombudsman thanked for making the notification and asked me to encourage others to make reports where appropriate.

gamerguy1

Im shocked that your neurology team didn't get any reports of your MRIs. That's such a mess as regards the whole transfer of reports between radiology and the ms team. At last you got hold of previous mris,now you have them on your own system for future. Good news no activity on the scans. Yes it's previous activity that leaves the scars and the symptoms if any. Previous damage seems to sneak up on you after a few years.

At last you got the info you wanted to get for a long time in regards the MRIs and reports

cj maxx

Fcuking MS . Insomnia, even after my ZZZ tablets and foot cramps. Up to get baclofen and back to sleep , I hope 😡

tohaltuwi

https://www.boards.ie/discussion/comment/122260596#Comment_122260596

The prof advised me to get MRIs done in Blackrock Clinic which is convenient, and I can have them done late into the evening and weekends etc, meaning I can have them done very fast, as opposed to waiting months in SVUH. I’m fully covered by VHI. However I had not been previously made aware that in effect you must get copies and bring them to SVUH because that’s the only way they will get them from an outside hospital.

I do know they have major internal inter-departmental communications issues too, which has affected many other people, but not me directly, yet.

I have had no contrast until recent scan as Blackrock hold that Gadolinium is harmful when it builds up in your brain, kidneys etc.

I have never had any treatment for this, I’m 63 with on & off symptoms since my 20s, progressive now. I had so many other major medical issues neuro symptoms wee viewed as insignificant in the context and part of my other stuff. And they were very likely connected. My symptoms now are extremely hard to live with.

It was soul-destroying that when I finally got to the attention of a clinic the laissez faire attitude to patient records meant that further totally unecessary delays have occured. So much could have been done for me all along, so many opportunities lost. Very hard to live with.