MS in all its glory

Back after a “technical absence” and a major relapse which landed me in hospital. My mobility was poor even with the rollator, in the end I hadn’t really the strength to hold myself upright, but worse that that my cognitive faculties had declined to where I couldn’t remember 30 seconds ago.

I didn’t approach the public hospital where I attend for my MS as it would have been either as “go back to GP to arrange care” or a 20 hour fluid-deprived wait in a chair. I approached Beacon ED, where there is still a long wait but they found a bed at midnight, and because I was in a poor state of mind and expressed the notion that I might favour euthanasia in Ireland, I was assigned a carer in my room for 24 hours, she could only take a break when relieved by another staff member.

what had happened to render me in this state was a slow lung infection, caused by reflux, building up, GP antibiotics and steroids didn’t seem to be doing the trick. Of course initially the Beacon told me they cannot assess the MS itself, but treating the infection aggressively with IV antibiotics fa e me a remarkable improvement over days and I am as “good” as I was back in January 2023, when my feet first became woolly and tingly all the time. A stick now suffices, indeed I get around indoors without one.

The infection wasn’t severe, except for one day I woke up with quite an asthma attack and coughing sputum, and I had been feeling dizzy. But it was enough to set me back a long way, and living on my own I could no longer take care of myself.

The moral of the story is to suspect there may be an infection driving your deterioration, and to get it treated as aggressively as you can. It might not be something that stands out very much or grabs your attention. It could be lung, sinuses, throat, dental, bladder, infected toenail, digestive.

Funnily enough the lad who’s car I reversed into is a personal trainer. We settled on good terms so maybe he could do up a few exercises for me . When diagnosed I tried a bit of gym but because my right leg is so much weaker nothing seemed to help and all the exercises were two footed ones

the length is fine . It’s probably more my sitting position . My sofa cushion is flattened from constant sitting . And I’m far from fat !

I’m fortunate to be one of the participants this coming week on 8th May in the UK based charity Oceans of Hope sailing event from Dún Laoghaire. Looking forward to it!

I’m hardly able for it , but I say wtf!

out today in Skerries visiting my cousin, who rightly loves a good walk and what nice territory there is out there for it. I brought my rollator, he seemed very disappointed I needed that today, but my arms started to give out badly and I could barely continue and needed a long rest. There was great disappointed sort of concern altogether. Going home in the train a bunch of Polish girls immediately stood up and very kindly ushered me to sit down, I must have looked an absolute wreck!

What’s causing it for me mainly atm is another infection, this time in my throat. The inside of my mouth, especially left side, is numb, as is left side of my face which droops a bit, I managed to cause an abraision when swallowing improperly chewed or rough food, thought it was just a little scratch, but got infected. Any infection very quickly causes half the immune cells to go to my brain in error and cause mischief. It’s a very predictable pattern with me. Fortunately my GP is giving me an appointment today, I I should get better about 4 days after antibiotic is started. A specific blood test demonstrated I had half the number of the typical sub-type of blood cells, a very typical finding in MS, the missing ones being attracted beyond the blood brain barrier like a magnet.

My face and throat are numb for past year, way better than the Trigeminal neuralgia I had before, but I can’t sense things properly in my mouth and they go down the hatch a bit by surprise sometimes and I’m prone to grazing my throat. He had a look down, there’s a linear infected ulcer to the left side going downwards, so amoxicillin will settle it. My esophagus swallow is good in itself, in fact excellent. My left lower lip is tingly and numb too, and I have a bit of facial droop. The right side of my face has the sensation of “electricity” tingling a very specific area. Speech therapist told me this is one of the most common issues in MS. It feels like the dentist has had a good go injecting little bits of lidocaine around my mouth & throat. I tend to bite my tongue and cheeks too quite a lot.

My You Tube of the morning’s sailing experience. There is nothing quite like handling a boat to do you good. You can be quite “decrepit” and still handle a boat, and the Physiotherapy is automatic and rewarding, and the fresh air is supreme. It’s also a I e oi g activity, very well suited to many people with MS. They kept telling me to put the sheet (rope) in the cleats to hold the tension but I found tending my muscle to that gentle extent was very beneficial, and I’m still enjoying the benefits. I highly recommend any of ye taking an opportunity to try a sailing event with Oceans of Hope

Rough weather would have given a good workout 😁 The feedback from participants on the WhatsApp group is that there has universally been a sustained improvement in some symptoms. I’m in the Outer He rides atm, very clear air, did sea swimming from a white totally calm beach with the clearest COLD water I’ve ever seen, haven’t felt as good in a very long time overall! The good air and moderate temperature seems to suit MS very well.

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.

#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.

Pasting everything into my blog as I get links.

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.

this evening 😫

”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”.

^^^^^

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 .

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)_/¯

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.

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.

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.

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.