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MS in all its glory

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


    Putting out the bins and stooping down is scary as I keep thinking I’ll topple over, which has happened before .

    on the cold weather , I preferred it as it stiffened my weak leg so I could walk steadily . One thing I did notice about weather , it’s not so much heat related as heat combined with humidity . Late July is awful in humid weather and I wear cooling bands on arms and ankles , but I know from sun holidays that it’s more humidity than heat that knackers me .

    Post edited by cj maxx on




  • The most basic of tasks can be a nightmare. Today I have lost almost all feeling below the knees my feet kept tripping me up even holding onto the supermarket trolley. Getting things out of the trolley onto the belt at checkout is another issue as my arms and hands have lost so much strength and dexterity. My fingers can hardly feel what they are attempting to do.

    I don’t see myself getting treatment because it would require very risky surgery to reduce my gynaecologist cancer risk, which the expert surgeon says would carry a significant risk of bleeding to death on the operating table no matter how careful he would be.

    Yet I’m going downhill rather quickly, and can’t see myself holding my independence that much longer. It’s really difficult living alone, but I do hugely value my independence.





  • Got a very detailed report sent to me by gynae surgeon, main copy of which has gone to Prof Tubridy, for purpose of risk-benefit analysis to inform me about the wisdom or otherwise to proceed with an exceptionally complicated hysterectomy. So have to hear back from MS Clinic now.

    On a positive note local tour operators in Costa Rica are more than happy to offer me disabled services. Some of them at a voluntary donation, others at a modest cost. The government is particularly in favour of specialised rather than mass tourism. It’s overall not cheap but they have a policy for providing to disability needs so disabled people aren’t fleeced.



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


    That’s good . I would never of thought of Costa Rica as a holiday destination .





  • I’ve booked with Travel Department who are running their first ever Costa Rica tour this year, and it is the most progressive country in the world as regards eco-tourism, and the most functional country in Central America, having been steered away from illegal drug production/gangs to sustainable tourism as a means of living for locals. It’s famous for its Sloths and Toucans and huge biodiversity, and has developed interesting ways of assisting disabled travellers to get around the jungles, up mountains etc.

    I was also told that Uganda can cater for disability and lads will literally carry you in a contraption to see gorillas.



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


    That looks fantastic



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


    I went to the shop to buy a topup for ESB . Of course I dropped the card on the road ,and under the car . The looks I was getting trying to retrieve it . ! I must have looked like I was full drunk and rolling on the footpath for fun 😷





  • I get the most peculiar of looks when I very suddenly start to wobble involuntarily if someone ones serenely comes within touching distance of me. Haven’t heard it described elsewhere but I start staggering all over the place, it’s embarrassing, and the looks I get as it takes onlookers by surprise. I think it is simply related to postural/truncal ataxia.

    I dread when I see children racing blindly towards me, I have a terror of falling over onto the pavement and being unable to get up without the most massive fuss, as it would take two strong people to get me upright and I’d be wobbly all over. It would likely result in someone insisting on getting an ambulance as if an internal wait in an A&E is going to do anyone any good unless there’s been a significant injury that needs a scan or something.,





  • Curious to read a bit more about this treatment, although resetting immune systems is a risky business. If we were all to set up a GoFundMe for MS treatment there’d be quite the stretch on people’s charity.

    I’d be beyond this treatment now anyway unless it came with a re-myelination and regrowth of brain cells. Then I’d set up a GoFundMe!

    😁

    My shrivelled walnut of a brain, with the classic white Dawson’s Fingers pointing out horizontally from the ventricles.





  • It is a bit experimental and only feasible in limited cases.



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  • I was exposed to this banned drug in Utero, had to go for cancer testing, but I see a lot of autoimmune stuff may be related.





  • Got the lightweight power chair delivered today, it can build up some speed on the demo!



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


    Applied to Releaf , uk based cannibas supplier. Hopefully I'll get some weed . It would really help with appetite ,.





  • Just had a look at the site, I’m not eligible because I haven’t been given any conventional treatment.

    I find the “MS nurse service” to be pretty useless to me as they too seem to only be able to help when you are being actively treated. It means if you fall into the category of progressive untreatable disease there’s nothing out there for you, as treatment seems to be a qualifying prerequisite. Yet Prof Tubs said last visit he was disappointed I hadn’t been with the nurse on the team. The nurses are under such pressure it seems they can’t deal with all attendees of the clinic.

    I’m finding Irish produced CBD oil is very helpful to muscle spasms. If you take enough of it, expensive stuff. I would like to do a nice leisure trip to Netherlands and take some edible weed in a small amount. Large amounts do not suit me at all, but I’m curious to learn what the full chemicals of the cannabis plant might, or indeed might not, do for me. My relatives are terrified of the thoughts of me taking weed and trying to talk me out of it. Of course they are cautiously looking out for me and I appreciate their concern.

    In recent weeks the right sided Restless Limb syndrome was driving me ballistic at night, it was like pure torture and kept me awake kicking and waving arm all night long, and if I did fall asleep would be there the instant I woke up again. In fact would awaken me. Due to lack of inhibitory signals getting through an area or two of my spine. Our nervous systems are really complex and always on the move as long as there’s life in us. Without inhibitory signals we’d be having restless limbs, cramps, seizures.

    I went to my GP yesterday, he prescribed Gabapentin, extra calcium, and domperidine for sluggish gastric emptying when it occurs. CJ, your appetite might be improved with domperidone (motilium) if you have slow gastric emptying. Our digestive and other systems have a big nerve supply that can be so affected.by MS. The Gabapebtin seems to be working absolute wonders re restless limbs, fingers crossed! It has me feeling terrific and I’m presently now functioning much better!



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


    i actually don’t think I qualify for weed as I’ve only been on one dmd (avonex) but it’s worth a shot .

    I tried CBD oil and found it pointless .





  • The CBD seems to help prevent the muscle spasms, I typically get abdominal spasms when trying to het out of bed or pulling clothing on, and hand spasms. I have to take several droppers full for it to work for me, and it’s expensive. My GP said if I wanted he would prescribe Baclofen.



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


    I’m on 6 baclofen daily so maybe that’s why I didn’t notice a difference

    Post edited by Boards.ie: Paul on




  • It’s always difficult to know if CBD works, and what dose to take, but it can’t be a coincidence that my cramps ceased upon taking it, although it has had no other benefit.

    The Gabapentin is extremely effective at stopping the horrible sensations. My legs are less spastic with it too, making it that bit easier to walk, and I’m feeling very positive and able to think much more clearly.





  • This outlines one of the studies regarding Gabapentin and MS, regarding spasticity. Since taking it for Restless Legs Syndrome I realise the sheer amount of muscle spasticity I had without the med. At times I could barely move a muscle, completely freer now in movement. And the slight jelliness of my legs is rather better than having them refusing to move when commanded. So I have no more restless twitching cramping limbs, I feel way more relaxed and much clearer in thought. For me 300mg is the effective dose, but it would be somewhat different for everyone, and as always one must work with the doctor. My eye muscles are better too, meaning I have better vision and can suppress any distracting double vision.



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


    I’m on a large dose of gabapentin and Baclofen due to spasticity, I really couldn’t manage without them. Fampyra has also helped .





  • GP said he can prescribe extra Gabapentin and if needed Baclofen but I am doing absolutely terrific on 300mg in the evening.

    Before Gabapentin I couldn’t fuppin move my legs properly at all, my hands were becoming useless, I was shaking, I couldn’t think at all, and I was exhausted with the relentless impulse to shake my right foot and arm. I notice when dose fades during late afternoon I can feel the symptoms trying to break through and my left arm started to move in its own. I was have multiple muscle spasms in belly, thighs, calves, feet and hands.

    The simple 300mg has revolutionised my functioning. I still have to balance with a stick, but I’m getting along a bit quicker, I have waaaay more energy, far less depressed, and feel I can be master of myself once more. I know the body grows tolerant to an extent of the drug, but starting low enough it can be raised, and is known to be very safe in the scheme of things. It has also stopped me getting the tremendous changes in blood pressure, atrial fibrillation and many of the horrible things the autonomic nervous system can do.

    I know it’s not a cure or anything near it, but for the very first time u got relief from symptoms after being nearly suicidal. I googled symptom relievers and asked my GP could be ores tube it, he said “of course I will”. I find the MS nurse service not to be particularly helpful tbh, they are too busy simply overseeing disease modifying regimes to address anything else, and u was told to go to my GP for any advice or prescriptions as they are not sufficiently resourced to practice in the way they’d like to.





  • If any of ye with MS don’t have any kind of medical card, eg if you are somewhat over the limit in income/savings etc, do as I did and apply for the GP Visit Card, it’s been a godsend to me as I’ve had to go so often for tweaking medications etc. The important thing is to get your GP to fill out the form so as it is clearly understood how you stand to rely on GP services. They ask you for all savings details and their proof, employment/income, ID, PPS, tax return. It’s a bit of a pain filling it all out online, and I had to go through a couple of “computer says no” hurdles, but when I posted the form manually filled out by my GP, to the doctor assessing my case, I was very quickly given a Yes.





  • MS Ireland sent an email asking if I’d be interested in participating in an ongoing research questionnaire regarding experiences of people with MS. It is part of a PhD student’s supervised research in the Science department of Maynooth. I always love helping with this kind of project, so consented and filled out the first survey regarding supports, by family/friends, by peers with MS. Regarding the latter they asked to list online resources where you communicate with peers, and I specified Boards as one of them 😀





  • Just back from meat branch MS Jreland AGM, where an excellent new book was promoted “Living Well with Multiple Sclerosis” by Trevis L. Gleason, with Emma Rogan, published by https://coffeetownpress.com/

    ISBN 978-1-68492-138-3

    It really does describe the experience of having MS so very well, and what a lovely guy Trevis is. He’s launching it in his native Seattle in next couple of days and later in Ireland. It’s a great book to have to relatives, friends and even doctors to read so they can comprehend what living with the disease is like.





  • I was asked would I take part in this survey, not that I really understand what it’s about, but I’m always interested in cooperating with research. What neuro than have I had? None, but sure that will add to the statistic.

    Has anybody here done the MS yoga or physio? I have been afraid to even try it before because of the severe cramps that happened pre Gabapentin any time I would attempt to “exercise” . In fact some years back I attended a physio post knee replacement and she remarked how my muscles were inordinately stiff and in knots all over. I found the physio especially difficult but persisted with it.





  • I’m doing a birthday fundraising for MS Ireland, detailed in my blog here:






  • I love this guy, neurologist Aaron Boster, he explains things so aptly. In this video he was interrupted by his beautiful dog!





  • This organisation is coming to Dublin next month and organisation a sailing day in conjunction with MS Ireland. Sounds to be a great opportunity.



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


    I've done the MS Ireland online physio classes and found them good, though a lot of the classes are on during the working day.



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