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MS in all its glory



  • Moderators, Science, Health & Environment Moderators, Social & Fun Moderators, Regional West Moderators Posts: 59,975 Mod ✭✭✭✭Gremlinertia

    As a complete ignorant to this illness, has anyone ever engaged a physio to try small weight bearing exercises to help keep what muscle control and strength there is going?

    Sorry for my clumsy wording, I am to work on quads, glutes and pelvis stuff to help my core stability and wonder if similar applies

  • Registered Users Posts: 13,740 ✭✭✭✭cj maxx

    I don’t think I need full time care in the next year but definitely in a couple . I can’t even walk about my small living room as I fell over the coffee table and haven’t been able to tidy it up. I only eat ( when I do eat ) dinners from the shop . I loved cooking and making dinners , but a microwave is all I’m fit for now.

    my deterioration in the last few years has been staggering.

    Post edited by Paul on

  • It’s shocking g how quick it can encroach. I’ve been unsteady coming down steps or on uneven surfaces a long time, but kept on kind of making excuses and trying to convince myself things weren’t really as they were as sometimes I could walk pretty fast on the flat, at times whizzing about. But show me a downhill or even two downward steps without a rail and somehow I couldn’t really do it. I didn’t bother even mentioning it to GP as he would have shrugged his shoulders., and a best repeat B12 blood tests would be done.

  • As regards my own experience, attempts to exercise my muscles, eg do leg raises, results in immediate severe muscle spasms. Everyone knows what leg calf cramps are like as they are common in people with zero issues, but in MS these same type of cramps also occur in thighs, abdominal, chest muscles, feet, hands etc, sometimes multiple muscles going into spasm at any one time. When Prof Tubridy made his initial assessment of me he asked me to demonstrate a leg raise, immediately my thigh and abdominal muscles went to sharp spasm and I was automatically catapulted into an upright position; he told me not to even try doing stuff like that as it was very clear I’m not able. I hate the way the disease robs you of so much capability of exercising, which is so good for mental health.

  • Registered Users Posts: 13,740 ✭✭✭✭cj maxx

    Walking downhill was something I noticed early on . Coming from the countryside in Monaghan that’s full of drumlins , walking up hills was grand. But downhill was terrifying.

    I remember going to the Canaries where there’s loads of small steps will no rail . Never again.

    Post edited by Paul on

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  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,487 Mod ✭✭✭✭byhookorbycrook

    Baclofen is a life saver for me .It can be a bit tricky at the start to sort out what dosage you need to keep you relatively supple but not do much that you fall over!I’d imagine your neuro would be the one to prescribe it, as some GPs might be wary .

    I did a zoom programme called “ Smart Moves” through MS Ireland and would highly recommend it .

  • I identify with so so so so much of that!!! I forking thought I was going insane!!!

  • Registered Users Posts: 13,740 ✭✭✭✭cj maxx

  • I was told by Prof Tubridy I could contact her, but I’m never quite sure of when to do that. But sure I was never quite sure to mention neuro symptoms for decades as the odd time I mentioned them they were dismissed and you learn to keep your mouth shut at the doctors lest you are considered hysterical (in a clinical sense).

    For a non-MS related reason I asked for a copy of my medical records from SVUH, wanted to see gynae record. Arrived yesterday in a flimsy torn envelope, the pages visible to the postman. Dreadful the way they put private info into such trashy envelopes.

    I did get to Prof Tubridy’s report of my ataxic gait and appearance of longstanding disease. The bloods he ordered are clear of non-MS neuro pathology, by a specific B cell ratio with another finding is consistent with active disease, and I can certainly feel it. On foot of this he will likely start me on Ocrevus in the new year, but only if I can clear the HPV. Men don’t get tested for HPV at all even though it can cause anal and penile cancers, but I think cervical cancer is a fair bit more commonplace.

  • Registered Users Posts: 13,740 ✭✭✭✭cj maxx

    Ever since the colder weather kicked in my right foot feels like a ton weight

    .I'm doubly careful trying to walk about

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  • Registered Users Posts: 13,740 ✭✭✭✭cj maxx

    I think I had a few physio sessions , but I was already to far gone to be of benefit

  • Moderators, Science, Health & Environment Moderators, Social & Fun Moderators, Regional West Moderators Posts: 59,975 Mod ✭✭✭✭Gremlinertia

    Thanks for the replies. Shows how little I know!. I do hope you all stay safe over winter..

  • Any attempt to exercise has “payment” for me and I think this is very typical. Often my muscles go into fierce spasms at attempts for muscle strength building, and after doing a lot of hobbling mileage on a good day results in me being almost bedridden the following day.

    Because my muscles are weak they are not holding my joints up well and I’m inclined to get sprains/arthritis, again I believe this is very common. I had a left knee replacement in my 50s, not realising a lot of neuro symptoms were unrecognised MS. The recovery was very slow and difficult and the surgeon went in about how I wasn’t putting in enough effort, when I was in fact doing everything I could do. My right knee is now grumbling, but I’m not going to have it touched as I’d be unable for the requisite post-operative exercise.

  • I know I’ve posted this before but if I get any kind of infection, eg respiratory tract, dental etc, my neuro symptoms magnify greatly, responding pretty effectively to antibiotics. I believe this makes entire sense as the toxic B cells increase in number to combat the infection, but instead of doing their correct job they migrate across the blood brain barrier to attack myelin, resulting in at least a temporary setback and of course contributing to underlying build-up of disability.

    Let’s hope for new therapy to restore myelin and hopefully even restore neurons.

    There’s hope in the pipeline, including repurposing use of the diabetic treatment Metformin. If the latter can prove to be helpful in trials this would indeed be sobering to celebrate as it’s generally safe & available.

  • The first part of this fascinating article focuses on cancer, the second part of MS and the theorised cause. The authors are credible and have been recognised for their work on the human papilloma virus as the cause for most cases of cervical cancer. Well worth a read. In my own case my mother was unable to breastfeed me and I was given cow’s milk to which I reacted very badly and was in a paediatric hospital to treat severe symptoms and my mother was instructed not to give me any ordinary milk in my diet. It’s interesting to see the possibilities as to how I got both MS and Ulcerative Colitis.

  • I returned from spending a week over Christmas in a beautiful flat resort on Riviera Maya in Mexico. The resort hotel grounds were superb for people like ourselves, and indeed I met some a couple of people with MS using wheelchairs on excursions, the tour company having no problem to accommodate them. Hotel staff accommodated me all the time, was able to skip the long queue on Christmas Eve for dinner, staff going around grounds in golf buggies kept asking me did I want a lift between buildings, to beach etc, it I enjoyed being able to try and get in my bit of exercise. Getting to Cancún by American Airlines via Dallas was easy with wheelchair assistance and going home I was met at the taxi at Cancún Airport by someone to assist me, got the most incredibly helpful young man who was most thoughtful throughout. It’s a good place for disabled travellers!

    Since returning my symptoms have sharply increased. I haven’t been able to leave the apartment as my feet just won’t work beyond getting me from bedroom-bathroom-living room. My hands and numb, shaky, weak, uncoordinated. My torso is unbalanced and shaking back and forth, difficult feeding myself and swallowing. I know this will likely improve but there is that constant bit of deterioration where overall things keep getting that bit worse.

    i am to go for another MRI series soon. There are multiple brain lesions, global shrinkage, and a syrinx on the thoracic area of the spinal cord. The latter is a small lesion where CSF gets trapped in the centre of the cord, if it remains small and stable it may cause no specific symptoms in itself, however it can enlarge and quite suddenly cause paralysis, but can be drained surgically. Broadcaster Ronan Collins had one of these which suddenly paralysed him, and got it surgically fixed. They are not common, can occur randomly but develop to a greater extent in people with MS.

  • Registered Users Posts: 13,740 ✭✭✭✭cj maxx

    It sounds like you’ve been through the wars lately . I hope ’24 is better .

    Mexico was a dream of mine ( hsct in clinica Ruiz , I think ) but my money was stolen , and now it’s too late I think .

    Post edited by Paul on

  • Wait til we get into remyelination & nerve rejuvenation! It’s possible but maybe not probable in our lifetime. If Metformin proves to be beneficial that could be fast-tracked and we could perhaps realistically improve a little.

  • When people ask what MS feels like to have, I always say it can be simulated if you really want to know.

    A good starting point would be to tie two different weights on each angle, and on wrists, to simulate the irregular heaviness and muscle weakness. Put strong bandages around each ankle so that the joints can barely move. A pair of surgical stockings, or better still two pairs on a least one leg to simulate uneven tightness of calf muscles. A tens machine or two on various parts to simulate pins and needles, some itching power, a good blurring gel in one eye, make sure to fill the bladder full til it starts leaking, cross both legs tight till they are numb with pins and needles, then try to walk on them. Compress elbows to cause pins and needles in hands, get lots of numbing dental gel for mouth, don’t sleep for 36 hours to simulate the lack of focus and exhaustion, and take maximum dose of Imodium to simulate bowel problems (although I have ileostomy), make sure to do all or many of these things at same time to give the best lived experience.

    *** I do not actually recommend using tight bandages that may cut off circulation, creating hazards that might cause you to fall, or taking inappropriate medication. But you get the general idea. 😁

  • Registered Users Posts: 13,740 ✭✭✭✭cj maxx

    That was the dream when I was diagnosed. I listen to a couple of BBC5 shows on podcasts. One was the Naked Scientist, DR Chris Smith , with news that a drug had shown positive signs for remyelation. That was 2014.

    I can’t remember the name of it but it’s a drug already in use . google threw up this.

    Post edited by Paul on

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  • This morning woke up unable to get out of bed, my right leg kept going from under me. It was bad yesterday, almost fell several times in Dundrum, and had a failed attempt to get to next floor, long story. Dragged my way to living room now where I have a rollater on standby, now have to use it to get around apartment. I’ve a horrible tremor all over and my hands will barely function. It really has me very frightened, especially that I live alone.

  • Trying to take a cup of tea almost impossible, my right arm won’t work reliably to hold cup, half to bring head to table to drink it, it’s really taken a horrible turn.

  • Now I have bad double vision. I’ve always had strabismus but could suppress the second image, can’t do so at the moment. It adds to my overall dysfunction & coordination. If all this continues I’ll be heading into a home for the bewildered pretty soon. Hate the thought of being fed and washed etc 😣

  • Moderators, Science, Health & Environment Moderators, Social & Fun Moderators, Regional West Moderators Posts: 59,975 Mod ✭✭✭✭Gremlinertia

    I'd love to have a lovely solution in a post for you. What an awful ordeal, hoping it's flare type episode

    Post edited by Paul on

  • Interesting that this drug is under review for potential remyelination capabilities. 🧐

  • I know, I want someone to wave a magic wand, I’m feeling devastated atm. I will likely improve a bit, but I’m gathering disability and waiting on further MRIs and HPV test to see if I could have and also benefit from treatment. I ordered a home HPV test which arrived today, at €89 cheaper that getting it at GP etc

  • Just got letter for a non-contrast MRI at Blackrock in two weeks, as Prof Tubridy says it’s very difficult to get to my ones in SVUH, and seeing as I have VHI I’m fully covered at Blackrock. I see on the letter it is specifically a cervical spinal one, must be because I have a syrinx lesion thereabouts that could cause paralysis if it expands 🧐 I’ve had 2 brain & spine MRIs already this year. Prof Tubridy always wants contrast but Blackrock have a non-contrast policy as they hold it can build up in the brain and potentially lead to complications over the long term.

  • I have been doing more research on syrinx formation, well explained below, it may account for my remarkable progression

    It can very much be associated with MS as explained below

    There is potential for improvement IF my fast deterioration is better accounted for by the syrinx than rapid MS progression as it could be amenable to surgical drainage, indeed would have to be operated on if/when it grows as it can potentially be very serious.

  • Registered Users Posts: 13,740 ✭✭✭✭cj maxx

    Interesting that it mentions Meningitis. I’ve been diagnosed with bacterial meningitis in the past as a catch all for a relapse before I was diagnosed.

    Post edited by Paul on

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  • At least you got diagnosed with something 😁 even if it was incorrect 🤣 I was going through records from years back after I came to the attention of a neurologist (not directly related to MS symptoms) who now only specialises in epilepsy, who noted “multiple white matter hyperintensities in cerebral cortex, uncertain cause, she does mention history of sporadic neurological issues which I believe are probably functional in nature”.

    Inotherwords, feck off, it’s not my sub-speciality.