MS in all its glory

https://hms.harvard.edu/news/melatonin-ms

Just checked up about melatonin. Will have a discussion with neurologist when I actually get to see one.

Has anybody awoken to find your axial body in myoclonus? Second time it happened me in recent times, this morning. My arms and legs were in myoclonus, in a painless way, from shoulder and pelvis, with my torso doing same. Had to wait until it died down for several minutes before I could move out of bed to the bathroom. About 5 minutes later it had resolved. I googled it and believe it’s termed propriospinal myoclonus, and sometimes originates from a spinal lesion.

Anyone else get the experience of feeling as if hot water was pouring down your abdomen? I get this on and off, just reminded of it as I’m getting up this morning, had to check with my hand if I had wet myself or had a stoma leak.

cj maxx

https://www.boards.ie/discussion/comment/120587289#Comment_120587289

I’ve woke up with leg tremors and tremors in other parts . Strangely enough the last time was tremors in my left ( good) leg. It’s interesting I’m not the only one who finds a vast improvement during the winter months . The worst time of year for me is late July early August . When humidity is highest.

I booked trips to the tropics this year before I realised what the creeping number & paraesthia was amounting to, and now I’m dreading it. Will just have to take it very easy and do little and just enjoy the privilege of being able at all to travel.

Today in a shopping centre I was quite struggling to get my legs to move at all, both affected by spasticity. A woman came up to me as I was packing the car and said she admired how very determined I appear when I’m obviously struggling. In a very busy coffee shop the lad serving told me to sit down and he was bring over my coffee. You get to realise just how visible your disability has become. I decided to just relent and order a light folding rollator for the days I will be needing it as the stick isn’t always quite sufficient. I hate the damn things. At least with just a stick anything simple could be wrong like recovering from a sprained ankle.

Anyone get the sensation of burning in feet as if they are bring dipped in very hot water, or as if hot water were being trickled down leg or belly?

Getting this a lot lately

GBX

Happy world MS day :)

https://www.boards.ie/discussion/comment/120657607#Comment_120657607

Attended coffee morning in Rathgar, and Trinity info seminar.l, asked an apt question re time to see Neurologist. Was left with distinct impression luck was with whoever you were lucky enough to be taken care of, and if they decided zero treatment attempt at secondary progressive your goose is fully cooked. We live in a sh-t country re neurology, how dare they get away with it.

GBX

I was at Trinity myself and recall your question.

It's definitely a lottery to getting sorted by a Neurologist. I do feel lucky/privileged to have been seen and diagnosed so quickly but not so lucky to have ms as well.

https://www.boards.ie/discussion/comment/120660320#Comment_120660320

The guy who was diagnosed with secondary progressive, seems to be just like myself, only diagnosed after decades of undetected relapsing remitting which in retrospect he realises he had. He asked why he was not offered any treatment at all, and the answer was a bit of a waffle. I can only presume he might have another serious medical condition which might be made worse by current available treatment.

Nigel Fairservice

I attended my neurologist recently. They enquired as to when my last MRI was and told them it was 3 years ago. They seemed a bit surprised themselves it was that long ago. I was asked to use my insurance for the scans because I'd be waiting another year to get the scans on the public system if they ordered them straight away. Hopefully my VHI covers it as I have never used it for anything MS related before. I took out the policy after diagnosis but the 5 year wait period for preexisting conditions should be up. Will call them anyway to be sure.

cj maxx

Anyone else hating this heat ?

Nigel Fairservice

Me, not coping too well in it. I'd prefer to work at home all week when the weather is like this.

gamerguy1

It's the humidity that makes it worse I think. My walking is gone with this weather. Hate this weather

My place at home is like a furnace, big south facing window in living room. All prickly, nothing working, tetchy, brain fog, frustrated. Very hard to get out of bed tbh.

I could not believe when I opened a letter today from SVUH telling me I was being given, in terms of neurology, a prompt appointment very same morning in July as I have a private appointment with Prof Hardiman in Beaumont. I haven’t mastered the art of bilocation yet, but I’m being advised by friends and relatives to go for the public one and cancel the appt with Prof Hardiman. Any thoughts?

Got caught out around tea time this evening. Just approaching the coffee table behind where my sofa is, and intending to sit down, suddenly all limbs froze or stuck together, anyway for a moment nothing worked and I found myself lurching face down, as happened before, this time towards the table rather than the floor. Legs “ricocheted” again the table edge and bounced me back straight up and my limbs once again regained composure and was able to avoid a fall. Previous time I wasn’t able to hold hands out and just recall the found and feel of my face smacking the floor, an absence where I had been unconscious , an inability to move a limb for ages when I regained consciousness and a legs spray of blood about the floor. I really thought it was all happening again, and it’s given me the absolute terrors over again. Lying in your own apartment semi-conscious in a big wet pool of blood and unable to move a finger is terrifying.

Had a bad fall at my own apartment jetty at weekend, aided by wine of course. Ordinarily I would have no excess effects like that after similar before recent developments. After coming home from shopping this evening, didn’t feet today, both feet stuck badly together with bilateral foot drop, nearly went tumbling again. I have ordered two splints for myself. This disease is scaring the sh1te out of me.

Attended my GP today, reported the seizure type episode I had. He said he had a good idea of what might be happening and took several blood pressure & sp02 readings, my systolic BP dropped over 20mg on standing up and sp02 went from 97% to 93% in same instant. It accounts for my tendency to pass out, and doc said that when blood supply is momentarily low enough in the brain it triggers seizure like myoclonus and peculiar effects.

It’s part of the overall way my autonomic nervous system is being affected, swallowing, bladder etc are other such issues. I really thought I was going a bit mad, falling on my face, a previous time having created a big blood pattern the shape of the map of Donegal and its islands 🤣

I’m booked for a week in Thailand end of next week, made the booking before I realised what was happening to me. Heat affects me badly, will have to spend a lot of time in the air conditioned hotel. Have booked wheelchair assistance at airports.

The real positive I can say is it was considerably cheaper than booking a similar trip to Europe, flights, hotel, luggage, transfers etc. and I will enjoy the different food and new surroundings.

I’ve just returned from a week trip to Thailand. Having requested wheelchair assistance I was treated very well throughout, with a bid to Etihad booking, I was able to upgrade in 3 of the 4 legs. Thailand is very good good value for money as far as we are concerned! Food splendid!

Had to transit Dublin -Abu Dhabi - Dublin. Private transfer to resort. 2-/ treated splendidly there. Everyone local got friendly with me, the wobbly woman on the clacking stick.

Gremlinertia

https://www.boards.ie/discussion/comment/120884933#Comment_120884933

Have to say I'm delighted for you. Apologies for jumping into the thread, I read all in this forum.

Back in Ireland for a day, I woke up to almost the worst my mobility has ever been. I have developed acted it all over and knocking and dropping things from my appallingly clumsy hands, clenching spasms all over my torso, double-vision, balance all over the place and feels like I’m walking on newly acquired prosthetic legs. I could draw my progression on a graph. I go sharply downhill, improve very slight, plateau a little bit at the new lowers mobility and the slightly jagged cycle continues. Cognitive issues are huge today, can’t remember what I am intended to do 2 seconds before, I almost put CBD oil in my eyes in error, instead of lubricating eye drops recommended by optometrist.

Attending SVUH neuro clinic for first time on Wednesday morning, I am bracing myself for the question: “what’s your worst issue?” Like where do I begin.

Gremlinertia

Start writing everything now, including any memories you have of issues.. I find it helpful on visits to pain clinic as I'm invariably having a "good" day when I go for an appointment

https://www.boards.ie/discussion/comment/120888230#Comment_120888230

Yes, the great phenomenon of being in best shape ever when visiting the doctor or the dental visit where the toothache has disappeared! Years ago when I had the colitis I made a couple of visits to a gastroenterologist for my ulcerative colitis. Didn’t take to him at all, and he would say “I don’t think you’ve much to be concerned about”. Very shortly after my last ever visit to him I became very sick with internal bleeding, attended another private hospital where I was admitted, re-scoped and told by new consultant there I had a huge amount of high grade inflammation & damage throughout my colon and that I needed a lot of follow-up. From my hospital bed I emailed the previous consultant who had way underestimated my condition, he said he was genuinely sorry to have missed it. But he was never really enthused by his job as far as I could see, daddy had been a doctor too I heard, so probably pushed into it to some extent. A few years later I underwent a colectomy/ileostomy.

I do have a list of symptoms, reads like an encyclopaedia of MS symptoms. The prof will have fallen asleep by the time he scans it. 🤣

I have my first ever SVUH public consultation re progressing MS symptoms tomorrow morning. As I said previously I was in a private hospital that couldn’t seem to help or refer me elsewhere and it took a lot of doing to get tomorrow’s appointment, which for me will be a crucial moment as I am deteriorating at such a rate.

I got a sack full of my paper records from the private hospital, and have been sifting through them to bring the most relevant ones tomorrow. Obviously stuff like daily nursing notes will not be including in the folder I’ll bring, but the clinical notes, MRI reports describing multiple periventricular perpendicular ovoid lesions, a spinal lesion, and a lumbar puncture report where “Oligoclonal banding is present” is mentioned at bottom of report. These findings are relevant, I know. I don’t want to undergo another lumbar puncture so hope they will accept this report, and can contact the private hospital for confirmation.

I know a gadolinium MRI in 3 months was suggested by private neurologist who visited that hospital but would not follow up, and I expect SVUH will order this for me. I don’t know the waiting time there for that, or if I will find myself trying to speed it up by having it done privately. Anyway, I’ll find out more tomorrow.

I’m bringing those records plus my own notes, as I have got so many symptoms emerging and receding, re-emerging again, it’s difficult to recall at any one moment everything that has happened. Increasing and unrelenting difficulty walking is the common factor all the time.

Any further discomfort from anybody who has gone down something of a similar path appreciated. 😇

Attended SVUH MS clinic first time ever this morning, met the good professor who is pulling out all the stops to get me on Ocrevus ASAP. He thought it was remarkable and totally unacceptable that I could have reached this stage without having had any attempt at medical intervention. Had 15 blood samples, ECG, to get fast tracked contrast MRIs, chest CT, & smear test in preparation for being put on the drug for SPMS.

cj maxx

https://www.boards.ie/discussion/comment/120898754#Comment_120898754

Is that professor Mc G .I found him very good .

https://www.boards.ie/discussion/comment/120899052#Comment_120899052

Professor Tubs, he wasted no time in starting action, was very focussed on my case. He wondered why I didn’t actively seek neuro attention when younger and having those RR episodes, but as I said when you are getting internal bleeding etc from colitis, cardiac issues, flesh-eating disorder, they kind of take centre stage, and any little mumblings I made about foot dragging and hand going into spasms etc were overlooked as irrelevant. I was once told I had optic neuritis after pain moving eye and blurry vision but they thought that must be part of the colitis, which caused multiple other complications.

Today when he examined me he asked me, lying on examining table, to lift each leg and immediately my thigh muscles went into a massive spasm and I nearly kicked him. He said it’s pretty patently obvious what’s wrong, but he said it in a way that really validated all the things that have been happening me.

I was very impressed overall by the MS Clinic in SVUH. Located beside the coffee shop, has its own loo. My appointment was for 8.50am, I was there early at 8.30, immediately had my details taken, told to take a seat, in 3 minutes la nurse took the obs and 6 minutes later seen by Prof Tubs, before my appointed time. Sent upstairs for the 15 blood samples, those were taken in 15 minutes, immediately down to ECG, taken in 5 minutes. Out of the building into my taxi home before 9.45am, armed with information booklet on Ocrevus and instructed “not to worry, everything is being put in place right now”. The relief I feel is immense, such a weight off my shoulder that everything is being done that can be done.

Before that I had been thrown to the lions after trying the private route when I became rapidly disabled almost in the fashion of a slow stroke coming on over days. Discharged from the private hospital and told by physician he had no means of getting me followed up, shrugging his shoulders with a silly grin on his face… “I hope you find yourself getting better”.

I was in despair, my GP didn’t seem to quite known what to do, was unable to use Neurolink referral, just seemed clueless until I begged him to print out a referral letter which I sent in registered post to SVUH clinic. Prof Tubs triaged me directly to his MS Clinic rather than general new patient neurology clinic. He has a very direct, no-nonsense practical approach which I like.

Just got a phone call from Blackrock, Prof Tubs asked them to fit me in as quickly as possible for contact MRIs and chest CT, so they have called me in this Sunday evening of all times. Everything is happening so fast now, I can’t believe it.

https://www.rte.ie/news/2012/1016/341863-online-referral-system-health/

This is the system my GP should have used in the first place, but he apparently didn’t know of its existence 🤷‍♀️