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MS in all its glory

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  • Had to cancel going on a short holiday break due to another autonomic vagus nerve issue. Developed severe gastroparesis with some ileus over past few days, bile building up in throat and causing havoc, inducing a respiratory asthmatic reaction too. Have had a couple of episodes in the past, but autonomic issues are difficult to deal deal.



  • Registered Users Posts: 13,743 ✭✭✭✭cj maxx


    Yes . Not at night but during the day when I need to go I need to go quickly . Ever since I started to sit down for pees it has eased

    Post edited by Boards.ie: Paul on




  • Well I’m a woman as per photo, always sit down (but stand up to empty ileostomy bag), but I learned yesterday after undergoing attempted hysteroscopy, that my uterus is tethered by adhesions to my bladder, might have a lot to do with it. SVUH Day Surgery gives the most amazing care.



  • Registered Users Posts: 13,743 ✭✭✭✭cj maxx


    I can't ‘drain the lizard’ standing up . The only way to do it is sitting .





  • I believe that’s not at all uncommon even in guys without MS etc. They had a demo table in the Radisson Athlone at the MS Conference last weekend as to how bladder can be drained when it doesn’t happen by volition. Easier in the ladies of course. Some of the gals wanted this for sheer convenience at concerts to avoid fitting on unhygienic toilets ! 🤣



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  • Underwent a hysteroscopy last Friday 22nd Sep, to inspect for potential cancer, but they were unable to complete procedure as they found uterus tethered forward in top of bladder from several previous surgeries/infections.

    Next day at home began to experience severe & sudden left lower pain, together with shaking rigors and temp over 40C

    Discharged now on antibiotics but warned about probable recurrences, it that surgery would be technically extreme difficult due to previous multiple surgeries.

    As long as I have an underlying uterus which could harbour infection, the more I cannot undergo immune suppressive treatment. All hinges on major gynae de idioms now.



  • Registered Users Posts: 13,743 ✭✭✭✭cj maxx


    ^^^

    i hope it gets sorted soon . Do you need another operation ?

    in my MS news I’ve realised , from watching countdown , that while I’m still good with words , all maths have left my head .





  • I do need a hysterectomy. Oh wow! I do get cog fog, moments or days when I can’t think of anything let alone straight. Other times I semi to have amplified sharpness which caused me great delight! 😁😁😁



  • Registered Users Posts: 13,743 ✭✭✭✭cj maxx


    I hear ya . There’s times i go to the shop and can’t remember why and names of people I meet . Other times im sharp as a razor .

    Post edited by Boards.ie: Paul on




  • I’m seeking a further consultation with another gynaecologist re the possibility of having a hysterectomy don’t privately, the reason being I’ve been told this absences can get chronic and recur in acute episodes. It is not compatible with MS treatment or any immune suppression, so I’m stuck in a limbo of sickness. Technically, the surgery would take hours of peeling away adhesions, replacing lost blood (adhesions being highly vascular), trying to mop up infection left behind. It would mean an ICU bed had to be available as there’d be a 50% chance I’d need it for first couple of days, and the public hospital would inevitably tend to keep cancelling the procedure until absolutely forced to do it when I’d be in the verge of sepsis. Apparently post-op infection in these cases is almost inevitable so I could reckon on a couple of weeks inpatient stay. I’ve been here before with bowel operations, but eventually you do come right, and I’ve made spectacularly good recoveries once infection is cleared. After the very complicated panproctocolectomy with ileostomy , as soon as all infection was cleared I was off to Antarctica and swimming in seas 2C!



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


    Crikey, Recode, that's a lot going on.



  • Registered Users Posts: 13,743 ✭✭✭✭cj maxx


    My right foot feels like it’s a ton weight





  • Actually it’s a complicated story but from gynae side all turned out ok. I had a panproctocolectomy in 2016 (no colon) so my internal anatomy had been radically altered and gynae team had attempted scope without paying heed. Turns out they accidentally perforated uterus, I ended up with peritonitis which responded to treatment, the stress resulted in peptic ulceration which is now being treated. I got a second opinion from expert private gynaecologist who is familiar with especially complicated surgeries and he identified what had happened and assured me my plumbing there is essentially perfectly healthy though altered in position which completely threw the public hospital gynae team. Private cardiologist assured me I am good to go for MS treatment as far as he’s concerned. I return to MS clinic end of November, cleared for treatment.





  • I often describe it to people on my worse days that it feels exactly like divers weights have been tied to lower legs, with tight bands around calves, and cutting off nerves like tightly crossing legs. MS can be fairly well simulated in healthy people.





  • Had read this before, but reminded of it by a post on LinkedIn





  • Edit - wrong thread!





  • This article arrived in my inbox, it explains so well the essential role of EBV in the development of MS



  • Registered Users, Moderators, Regional Abroad Moderators Posts: 2,207 Mod ✭✭✭✭Nigel Fairservice


    Interesting. I had a very bad case of glandular fever in childhood. Missed weeks of school over it.



  • Registered Users Posts: 224 ✭✭eimsRV


    Evening all,

    wondering if anyone can share their experiences of navigating work/career with worsening MS symptoms. Particularly cognitive issues. I have taken some sick leave to deal with this, but now face decisions on if I return back full time or look to reduce responsibilities and hours. My employer does have a long term illness insurance plan, but not sure if this kicks in if I go part time versus can’t work at all.


    thanks x





  • Attended the SVUH MS Clinic this morning, seen again by Prof Tubridy & examined by students, one of whom asked me to try tandem walking, which is impossible for me. Prof Tubs furious about how I was neglected for years when I mentioned episodes of foot dragging etc and was dismissed, and he says my GP is most uncommunicative, as is a doctor who “looked after me” in Blackrock.

    As I have HPV , he says treatment is not possible unless I can clear that, and what’s more it looks questionable that I have progressed beyond a window where treatment would be effective, I nearly took a toss when in seeing him, he thinks it’s not at all ideal that I’m living alone.

    But he is ordering another MRI and I had 16 blood tests this morning. I’m to be referred back to gynae re the HPV, and he will see me again around February/March.



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  • I’m retired (young), have terrible short term memory loss, would never be able to hold down a job now. Ironically, I can do IQ tests no problem 😁 so my daycent intellect is well preserved. I’m good at problem solving but I can’t recall what I did two minutes ago!





  • Yesterday had a very bad day with mobility, as well as recent severe short term memory loss & increasing fatigue. Was out doing shopping, supported by my stick, could hardly move either leg, ended up coming to a stop for several minutes, left leg refusing to budge an inch extra with stiff muscles, right leg doing its thing of buckling under me. I was stuck to the spot for a minute until I inched forward and got to a shopping trolley for support. Very depressing how it’s so badly catching up on me, all happened so quickly this year.

    Well meaning people suggest I get shopping delivered etc, the point is I absolutely crave getting out and about and if I make a habit of being stuck looking at the 4 walls the muscle I have left would perish and I would get utterly depressed as I live on my own.



  • Registered Users Posts: 192 ✭✭tanka006


    Hi All,

    @[Deleted User] i have exactly what you describe, walking, memory & fatigue. i have PPMS

    I have been on infusions each six months called OCREVUS - About OCREVUS

    It targets a type of immune cell called a CD20-positive B cell that plays a key role in the disease. OCREVUS is approved by the FDA to treat relapsing or primary progressive forms of multiple sclerosis (MS). OCREVUS is given once every six months by an intravenous (IV) infusion.

    Now for my walking i am starting a one month test of a drug called Fampyra. -Fampridine is only available on prescription under the supervision of a doctor with knowledge of MS. The doctor usually provides an initial prescription for two to four weeks and then the treatment is assessed to see if it is working, usually by timing how long it takes to walk a short distance (eg. 25 feet).

    Up to a third of people find that fampridine improves their mobility, so only this group would be prescribed fampridine in the longer term. The initial two to four week trial is currently funded by the manufacturer.

    We will see, i am concerned as it states common side effects include dizziness, headache, back pain, difficulty sleeping, feeling sick and stomach upsets. Dalfampridine may worsen trigeminal neuralgia. I suffer with terrible trigeminal neuralgia. But i need to stop falling & walk properly.


    Tanka

    Post edited by Boards.ie: Paul on


  • Registered Users Posts: 1,608 ✭✭✭adam88


    Hey all. Diagnosed 5 1/2 years ago. Overall I’m doing quite well. Very mild symptoms. My neurologist has sort of left me to it in terms of getting on with life. I’m on gilenya and as I say things are okay. I’m just wondering is there any benefit in being more pro-active in terms of treatment etc in order to prolong mobility and minimising symptoms??



  • Registered Users Posts: 13,743 ✭✭✭✭cj maxx


    Having a serious bout of fatigue these last few months. It all started with a bug / dose I had which really knocked me for six , and haven’t got back on my feet properly since. It doesn’t help that I am stressed out about legal issues I need to see to . My appetite is completely none existent as all i do is sit around all day . I’m just in a bad place at the moment.



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


    I'm on Fampyra. It is funded only for those who are deemed " responders." You will do a walking speed test before you start on it and another after a month. At the time of my first test, I had 2 broken ribs, so my walking was naturally quite slow, a month later I was quicker. Might be worth keeping in mind.... It doesn't particularly make me much faster, but I can stand for longer periods of time and have less spasticity.



  • Registered Users Posts: 13,743 ✭✭✭✭cj maxx


    I don’t think it would do me any good now . Im on a walking stick full time and 6 baclofen daily for spasticity. It probably would he been great years ago . I’ve had symptoms all my life , weakness and tremors in my right side going back to primary school. And my lesions are pretty old .





  • Prof Tubridy said if or when I get treatment it will likely be Ocrevus, but that having pathogenic type HPV rules any treatment put altogether, unless I can find myself clear of it, as risk of cervical cancer would be too great. Also before offering Ocrevus he is making sure I don’t have a very similar demyelination to MS (Anti-MOG disease) which would require very different treatment. He said any attempt to treat me might be too little too late and he should have seen me years ago.

    I got Covid last week, it was a very short few nasty days, really very minor in the scheme of things. However the MS has been frighteningly bad since. I have almost no feeling from the waist down, can’t feel my legs at all but for vague pins and needles. Except when they itch like mad, or I get crawling sensations or that feeling that hot water is trickling down which I sometimes imagine is urine, which it’s not, or sometimes I feel like fingers tapping me. But I keep hitting my feet into things and tripping nonstop unless I’m looking down ALL the time at what my feet are doing. I’m losing mobility very fast, getting constant spasms around my torso, but I’ve learned a psychological trick for relieving this.

    A poster mentioned about having symptoms since childhood. I used to tend to fall over sideways often as a young child, and there were other issues, but I thought these things most happen everyone. my mother was given the banned drug DES during her pregnancy with me, allegedly at the time to prevent miscarriages. It creates all sorts of challenges in offspring, particularly females, and alters genes. I had ulcerative colitis until I got my ileostomy in 2016, a condition that comes with autoimmune reactions in joints, skin, eyes. Any time I casually mentioned anything neurological, “likely part of the colitis”, and even though a neurologist saw “white lesions” on an incidental MRI, he told me they might or might not be significant, and fecked off with himself to another hospital and sub-speciality.

    Post edited by Boards.ie: Paul on




  • I feel this time next year I will be using an electric wheelchair a lot of the time. I’m amazed to see people with MS using manual wheelchairs, my arms and hands wouldn’t have that strength, I just keep dropping everything, I’m the clumsiest bull in a china shop and I could get knocked down by a little old lady making firm headway… nearly happened yesterday, had to stop and stand still to allow her to go around me. 🤣

    I live by myself and it’s getting frightening even walking around to local shops, and I was nearly run over by an impatient driver on my own quiet estate who blared the horn at me to get out of his way. I imagine I’m going to need full time care in a few years.



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  • Re Baclofen, I hear it spoken about for spasticity and spasms, but how do you get it prescribed? And what are the side effects? I’d be afraid of anything making my muscles even weaker. They are shockingly weak as they are. Will be attending my GP on Friday, but he can be quite cynical at times of prescribing things. Mind you he didn’t help at all in getting me neuro attention in the first place and is perplexed at how I’ve gone so poor on mobility so very quickly.



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