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MS in all its glory

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  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    I’m going from relentless insomnia to not being able to keep awake and being constantly drowsy and dopey throughout day. And the neuralgia & parathesiae can dement you. Recently had a nonstop nerve pain from left nipple through to back, known as part of T4 syndrome. The right side of my face feels as if somebody was tickling my check with a brush nonstop. My lips and inside of my mouth and throat are numb as if the dentist had a go go with the Novocain.



  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    I had to eat some humble pie yesterday. I am fed up with ordinary drivers taking up disabled spaces, which in certain car parks and situations are very important to me. One thing though, people with the requisite blue bags do not display them properly, in one case hidden behind tax & insurance discs, other times display flat over dash in such a cushion you’d have to nose in to see it.

    Yesterday a lady was parked in disabled space beside, I couldn’t see any badge visible, then as she got out I saw her bouncing, literally running to shop whilst I had to hold onto the side of my car to progress around to boot to get out my mobility device. She bounced back to car, having left the trolley back by the shop. I asked her had she a badge, and she said “the same as you have, perhaps you should look”. She became very upset and went onto say she had cancer and fibromyalgia and never judge the book by its cover. I had to apologise, duly eat my humble pie, and wish her well in her continued health journey. only way to go.

    But I do wish these badges would be displayed clearly, as competition for accessible spaces is big. Also sometimes people need a convenient rather than an large accessible space where mobility issues exiting car are especially needed. Also displaying a non official disability sticker at the back is good as an indicator to the casual observer.

    Ironically the disabled spaces on Dundrum Shopping Centre are grossly inadequate as they are narrow and nobody with a wide mobility device could possibly use them. I park at one of the often unused corner spaces which have wide space around as I need that leverage to open door wide, cling onto car and work around to rear.



  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    re sleeping pills, eg Temazopam, my GP will prescribe these occasionally and these times I usually get better sleep. It’s always said they begin to lose effectiveness if taken all the time, and I find this to be true to an extent. They cannot be given on repeat prescription by pharmacy law, and it would take monthly requests to get them on an ongoing basis. I’d love them much more of the time, but am glad when I do get them, it’s like a treat 🤣



  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    Thanks for posting about Humira. Only for the fact that I'm on Tysabri, I might have been put on it for hidradenitis suppurativa.



  • Moderators, Regional Abroad Moderators Posts: 2,246 Mod ✭✭✭✭Nigel Fairservice


    I can't keep myself awake these days. Tiredness will hit hard out of the blue. Fell asleep in the armchair last night about 10:30 and next thing I know it's 7:30...nearly time for work. A regular occurance the last few months.



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  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    I’m so “glad” to hear similar stories. Between all that and the hell of feel g my body has been taken over by aliens and the utter despair I too often feel.



  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    I filled up the form, curious to learn more. It says it is specific to managing spasticity with regard to MS. I have bought the expensive Irish produced Hemp Oil available in Boots, find it effective in this respect, if taken in addition to prescribed dose of Baclofen and I find I have to take about 3 or 4 whole dropper fills of it to have the requisite effect, otherwise I personally don’t find that product useful. It came up on Liveline, so got me curious again.



  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    Could you get Sativex?



  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    I got an email reply from the above form - get your consultant to fill out the application. LOL, I’m having immense difficulty getting the most basic initial attention, like getting my scans actually seen.

    Just taken 4 dropperfull swigs of cannabis oil from Boots, most definitely helps with spasticity, that is undeniable. It’s just very expensive stuff.

    PS if anyone wants it for recreation, look

    Elsewhere than medical cannabis 😁

    Speaking of which I seem to have kiled my exotic plant by feeding g it too early. Defo needs a grow house environment.



  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    Got all my scans, popped into E: drive and compared recent Left-MRI with contrast and right- previous MRI without contrast, of same slice.

    It’s an interesting exercise. Essentially lesions are the same in location, just much better viewed with the contrast.

    Previously, Blackrock had asserted they would not be doing any contrast as gadolinium is a metal that can build up in the body and cause harm, but apparently requesting doctor strongly asserted it was needed. Previously Prof Tubs himself ordered it so ¯\_(ツ)_/¯



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  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    one thing in recent nights I find extremely hard to cope with is the following-it grows large when I’m lying down in bed, I fall asleep with it, and wake up with it:

    An extremely strong sense of unease centering mid chest, going through stomach, right down to where my rectum used to be prior to colectomy surgery. It’s similar to visceral anxiety as anybody might experience from time to time but very very powerful, amounting to a vice like grip which I wake up to. It also projects strongly into both shoulders. It’s an absolutely horrible sensation and causing me nightmares.

    Anybody with similar?

    The above depicts best my experience, though it may look kinky or satanic! 🤣



  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    It sounds like the ridiculously named “ MS Hug.” Stretching helps . Baclofen definitely helps me ! Sorry your neuro isn’t more helpful. As I’ve posted previously, my neuro is amazing ! She’s at each Tysabri infusion and her nurse is too. Nurse will respond via WhatsApp within a few hours , at most . That’s why I continue to drive a 7+ hours’ round trip each month .



  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    I wouldn’t be able to drive more than an hour, but I’d get a train or bus if I thought there was any such thing as a decent neuro service. It’s more than appalling, heard from more people about scans getting lost or being unable to be read, and treatment denied. I’m nearly at the end of my tether and I’m literally falling apart and at times I’ve suicidal ideation, made much worse by the total lack of care. I’ve just learned from somebody in MS Ireland that there is a terrific MS service in Fuerteventura of all places, German run, totally comprehensive.



  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    yes I’ve heard of the “MS hug” and quite frankly it is so ill-defined as to be meaningless. I am familiar with very sharp muscular cramps around my abdomen, and have had sharp tight contraction of chest muscles, also have had “T4 syndrome” which in my case causes a neuralgic pain radiating from my back through my nipple. I think what I’m describing is a mixture of bits of all that. All these things worse at night when lying in bed.

    Before I came to the attention of a neurologist, I developed very sudden chest pain, nausea & weakness abruptly after I stood up for myself in a confrontation with a not very nice individual, thought it was just stress and went home to bed. Felt even worse next day, crashing chest pain, and dizziness, got myself to hospital where after a blood test I was told I was having a heart attack and would need to go to the cath lab and stay with them a few nights. Interestingly the cardiologist told me straight off what was wrong, and what wasn’t. My arteries were fine, but I had acute left ventricular failure and ballooning of the chamber, a condition known as Takotsubo Cardiomyopathy and originating in the nerves rather than the heart itself.

    I can’t link to the multiple articles out there but here’s a screenshot of the header of one of them. Simply put demyelination in certain areas can lead to dangerous overstimulation of part of the heart muscle.



  • Registered Users Posts: 14,034 ✭✭✭✭cj maxx


    I’ve got used to taking baclofen by rote , but I honestly don’t think I need them in warm weather for stiffness . Even my tremors ease with heat



  • Registered Users Posts: 83 ✭✭gamerguy1


    I find baclofen doesn't do what I want it to most of the time no matter how much I take. This warm weather definitely makes my legs like jelly if I stay out in it too. I think I don't need them in the heat too but cutting down isn't that easy on my high dose



  • Registered Users Posts: 14,034 ✭✭✭✭cj maxx


    For cramps I find them good enough , but this warm weather means I miss that stiffness that I rely on get around the house . Damned if you do and damned if you don’t .



  • Registered Users Posts: 83 ✭✭gamerguy1


    For cramps and spasms baclofen works good for me too. Trying to walk in this heat kills me out. No strength to lift my legs and ankles. Sitting down inside until it cools down a bit is all I'm able to do now.



  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    The heat’s a real killer. I remember in Thailand getting into a pool that was difficult to get out of, with the heat I found it extremely difficult to lever myself up from it and I didn’t get into it again as there was almost nobody else around the pool area at time of year I went. I read of cases of people living by themselves with MS who were sunbathing in own garden only to be found dead by neighbours, having died of heat stroke after not being able to lift themselves from lounger.



  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    I reading about this device or maybe gimmick for vagal stimulation that might help with insomnia, depression, anxiety and autonomic dysfunction in MS

    https://cybernews.com/health-tech/nurosym-review/

    The site’s bots won’t allow me to post it as a link, but it does interest me. An expensive item, but if it really works it would be worth it. At this particular moment I could afford it.



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  • Registered Users Posts: 83 ✭✭gamerguy1


    Heat definitely isn't good for some people with ms. Frightening that you struggled to get out of the pool, especially if nobody there to assist you. All my limbs went heavy on me today in the heat, barely made it into my house. It was only 24 degrees here today, any warmer and I wouldn't have made it out of the sun.



  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi



    Worth a read…

    Novel drug seems to be particularly effective in controlling MS



  • Registered Users Posts: 2,099 ✭✭✭tohaltuwi


    I did a little experiment and bought several little bottles of Irish CBD oil in Boots, it doesn’t contain THC (except minuscule amount) so there’s no mind-altering effect. It’s darned expensive at €30, but I came into a little extra money, so de used I could afford my experiment on this occasion.

    I took 3 full droppers full of oil twice a day, the whole bottle practically totally used in a week.

    Result: coincidence, placebo effect?
    An enormous improvement in many respects. Nerve function overall very improved. Especially noticeable is a lot more feeling in my feet, better hand dexterity, cognitive function improved, mood also, better sleep, way more energy, anxiety and restlessness decreased.

    I would highly recommend others to try this for a couple of weeks, consistently, just to see if anyone else experiences similar benefits, or not. IIf you find it has benefits above your existing meds, which still need to be taken, it would be the basis for a discussion with your consultant on getting CBD treatment sponsored. However to convince your consultant, you would realistically need to stop taking the oil after a few weeks to see if your body then misses the benefit, and to repeat the experiment once more, and of course keep a daily diary of symptoms before starting and for a few weeks after finishing.



  • Registered Users Posts: 83 ✭✭gamerguy1


    You got some good results from that, good to hear. Boots and h&b have low dosage stuff in their stores and it's expensive. Few Irish companies selling stronger doses and expensive too. It works for some people definitely. I felt nothing from it, maybe need higher dose. Sativex is the 1 I want if I can get consultant to give it to me



  • Registered Users Posts: 1,609 ✭✭✭adam88


    so after 6 years on gilenya my consultant wants to change me over to mavenclad (cladribine). My mri’s are stable but I’m starting to show new symptoms over the past few months. Anyone any exp with coming off one med and starting another or what is peoples experience with mavenclad?



  • Registered Users Posts: 83 ✭✭gamerguy1


    Gilenya is supposed to be good DMT, pity it's not working as it should for you. I think it's 6 to 8 weeks for washout,not sure. Iv changed treatments a lot and no problems and it was around that.Your consultant might give you steroids to keep you stable if needed but nothing to worry about changing treatments. No experience of mavenclad but it's supposed to be good treatment.



  • Moderators, Regional Abroad Moderators Posts: 2,246 Mod ✭✭✭✭Nigel Fairservice


    I came off Tecfidera and went on Mavenclad. Had stable MRIs in 2020 and 2023. I had been on Tecfidera for a few years I didn't like Tecfidera due to the side effects so my neurologist suggested Mavenclad. I take 10 days worth of tablets in year one and will take 10 days worth of tablets in year two and no treatment then for 3 years. At least that's how it's meant to work I think.

    Took 5 days worth of tablets in February and 5 days worth of tablets in March so my first year of treatment is complete. I'm not due any more treatment until next year. You have to have a chest x ray and HIV test done before starting the treatment due to the nature of the medication. It's been a positive experience so far. It's nice not having to take tablets everyday like Tecfidera. No real side effects other than a bit of fatigue but I had that on Tecfidera anyway.



  • Registered Users Posts: 14,034 ✭✭✭✭cj maxx


    After a couple of right falls today . Stupid brick pavements where the bricks are uneven because if looks nice . Never mind people on sticks that might drag their foot and trip over them . I thought I didn’t need as many baclofen in hot weather , big mistake . I already have a sore back from another fall and now I’ve strained something in my upper leg and my finger .



  • Registered Users Posts: 14,034 ✭✭✭✭cj maxx


    Decided to get in contact with my new MS team . I haven’t seen a neurologist or been on DMD for years now and after my recent falls I decided to contact them . I’m already on the waiting list so just waiting to see if I get an appointment



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  • Registered Users Posts: 83 ✭✭gamerguy1


    Not good having a fall, lucky you didn't break anything. Baclofen does help a tiny bit,I never feel it does anything but I'd definitely miss it if I didn't take it even in hot weather. You may be waiting a while to see a neurologist, contact ms nurse would be a good thing to do, might speed it up. Getting on a DMD is something you should think about



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