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MS in all its glory



  • Registered Users Posts: 10,300 ✭✭✭✭ cj maxx

    I've never heard of that .

    Anyway, I've been described as feckless ,memory wise before but my short term memory has gone to hell. MRIS are stable but I noticed how often despite memorising a short shopping list (3 items) it takes me ages to remember them.

  • Registered Users Posts: 314 ✭✭ toffeeshel

    I tried one on. It didn’t improve my gait much more than the ankle brace that I wear. Certainly not €5-€7k worth of improvement. However that’s not to say it wouldn’t work for you. Trial it but don’t build your hopes up too high

  • Registered Users Posts: 1,360 ✭✭✭ upinthesky

    Guys y cant find a search in thread option so i am sorry if this has come up before, i can i ask what was it that first brought you to go to your doctor before your diagnosis like what was it initially?

    I have an appointment with my doctor next week because i just cant take the tiredness anymore, now i can work and get up everyday but in relation to my colleagues my after work life is zero because of lack of energy, i hear them saying they are going to the gym, shopping after work etc but there is no way i could all i want to do is sleep.

    Eyesight has gone down hill but nothing as what is being said on # here just change in prescription and eyes look healthy

    Left leg goes numb at night maybe once a week wakes me up and now my left arm is given me trouble too, so im not sure what is up with me but im sure i have or am lacking in something

  • Registered Users Posts: 11,565 ✭✭✭✭ GBX

    For me it was dizziness, balance and double vision. I left it about a week but ended up in A&E. Thankfully I had MRI's and Lumbar spine puncture.

    You're doing right going to your appointment. Definitely get it checked with them and they may refer you to a Neurologist. Hopefully all goes well for you

  • Registered Users Posts: 935 ✭✭✭ whatever76

    I went to GP thinking I had back issues/sciatica as I had lower back pain and I had some numbness in my feet and lumbar region. He referred me to A and E for MRI of lumbar as he was concerned that maybe be Cauda equina . thankfully Nothing came back from MRI but my symptoms were progressing - Numbness was travelling up my legs and I was in pain . Really grateful to my GP spotting my symptoms not right as I had back issues before. I luckily got referral to Neuro and managed to get appointment. I had to get Head, T and C spine MRIs and this showed flare up just between shoulder blades - went to hospital for more test etc but in meantime I was lucky as I seem to be recovering from relapse ( took 3- 4 weeks ) without any treatment at that time . Anyway you doing right thing - go to GP and discuss symptoms and take from there. for anything Neuro it is a long process of tests etc before conclusive diagnosis so best start now - best of luck and hopefully you get answers and things go ok !

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  • Registered Users Posts: 2,935 ✭✭✭ tinofapples

    Folks, what are your experiences with fatigue battling meds ? I've been on Amantadine for 2/3 years now and just don't see it doing much for me. Any recommendations of alternatives that you may have found good ? Will be seeking other options in future and would love to hear any of your thoughts, thanks.

  • Registered Users Posts: 10,300 ✭✭✭✭ cj maxx

    For me it was tremors and weakness in my right side. GP said MS washer guess but took LPs and MRI's for an official diagnosis.

  • Registered Users Posts: 1,360 ✭✭✭ upinthesky

    So i have been given a blood test for the tiredness and doctor did a few tests like stretches finger to nose and don't think they noticed anything so that is good, but did anything show up on your blood tests? to be honest i hope something does or its like starting all over again but doctor said if things don't improve they will send me to a neurologist and maybe an mri of my arm.. problem there is my arm and leg are okay now but that's what happens, I'm fine now and in a few months it will happen again but tiredness and aches never go away..

  • Registered Users Posts: 132 ✭✭ CivilCybil

    In my own experience with MS it was more a case of ruling lots of things out as opposed to a definitive test.

    This is from

    "The key requirement for a diagnosis of MS is evidence of damage to the central nervous system that is disseminated in time and space. This means showing that damage has occurred at different dates (Dissemination in time, or DIT) and to different parts (Dissemination in space, or DIS) of the central nervous system. This distinguishes MS from other neurological conditions."

    So at times they might suspect MS but not be able to give a diagnosis until another area of demyelination shows on an MRI. There are certain criteria they have to meet outlined in this article.

    For me the blood tests were done to rule out things that can cause similar symptoms (vitamin b12 deficiency, Lyme disease, syphilis, HIV) - I had a battery of blood tests to rule out loads of different things. All my bloods came back normal.

    Then I had a brain and spine MRI which showed demyelination on the brain and on two parts of the spine. The brain and one spine lesion were old. One was new. This showed that the damage had occurred on two different dates.

    My first symptoms were weakness and altered sensation in my right leg. It went away and a few months later I had optic neuritis which is when they started testing for MS.

    So I'd had two separate relapses with two completely different sets of symptoms. I had more than two areas of damage on the MRI which occurred at different times. So I didn't need a lumbar puncture to confirm the diagnosis. Some people do.

  • Registered Users Posts: 12,821 ✭✭✭✭ bnt

    In my case it was zapping sensations down my spine when I walked or bobbed my head, known as L’Hermitte’s sign. I was first referred to an osteopath, after an X-ray, then a neurologist. MRI showed lesions in my cervical spinal cord and brain, so it was a pretty straightforward diagnosis they ruled out B12 deficiency etc. Gilenya (> 10y now) seems to prevent well, but there are other symptoms: fatigue, memory, and I can even blame general crankiness on MS. 👺

    That was over 15 years ago, but I’m still seeing the same neurologist, most recently a few weeks ago. He had a bunch of students in there with him, so we tested them on the diagnosis, starting with the same symptoms I originally had. (Playing with medical students is fun.)

    @[email protected]

    We are afraid to put men to live and trade each on his own private stock of reason; because we suspect that this stock in each man is small.

    -- Edmund Burke

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  • Registered Users Posts: 10,300 ✭✭✭✭ cj maxx

    I came out of a shop today , with walking stick, but found myself unable to step onto the road, as the 3/4 inches were too high. Stepping up is OK but stepping down is a lottery

  • Registered Users Posts: 935 ✭✭✭ whatever76

    Prob a silly question going on holidays in a few weeks to Portugal - first holiday since diagnosis. I've been feeling good usual tiredness etc but any tips? ( outside of not forgetting DMT :) ). Bringing a hydra flask to keep me hydrated

  • Registered Users Posts: 10,300 ✭✭✭✭ cj maxx

    I bought cooling wrist straps for the summer months. Worked OK to keep me cool.

  • Registered Users Posts: 10,300 ✭✭✭✭ cj maxx

    I can't say if it helped specifically with fatigue, but my general mobility and general health was greatly improved by smoking a joint. I'm tried cannibas oils (CBD) and they weren't worth a damn. But a good joint ( or 2 😁 ) left me with a good night's sleep and actually feeling refreshed the next day and not just sleeping for sleepings sake. , I'm advocating it , just my story.

    It also helped with my appetite which also helped

    I Mean weed not hash

  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,365 Mod ✭✭✭✭ byhookorbycrook

    I highly recommend getting involved with a neuro-physio and also signing up for the MS Ireland "Smart Moves "programme, It should be starting up again around now.

  • Registered Users Posts: 10,300 ✭✭✭✭ cj maxx

    I would but I’m (now) north of the border, and while I’m still with my neuro in the eastern trust my MS nurses are from the western one which is based in Derry. The reason I’m with my old neurologist is there no specialist MS neurologist in the western area and it’s easier to get to Craigavon . I might give them a call though.

    Post edited by cj maxx on

  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,365 Mod ✭✭✭✭ byhookorbycrook

    I have some of the exercise sheets if you'd like them.

  • Registered Users Posts: 10,300 ✭✭✭✭ cj maxx

    Does anyone here use a wheelchair despite being able to walk. I’m thinking of one for home, city visits. My walking is pants and tiring

  • Registered Users Posts: 10,300 ✭✭✭✭ cj maxx

    How's are you keeping up in this cold weather. It normally suits me but I'm very stiff. Baclofen isn't doing the job.

  • Registered Users Posts: 1,788 ✭✭✭ Nigel Fairservice

    I think I definitely do much better in the cold weather. I look forward to this time of year so much when it's colder. I find I have more energy for things. I dread when the warm weather starts to roll around again.

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  • Registered Users Posts: 10,300 ✭✭✭✭ cj maxx

    I found its the hot humid weather that gets me.

  • Registered Users Posts: 14 Fourwinds

    I am the other side of weather the hotter it is the better my body behaves. I have taken to staying at home and in longer in bed than the summertime

  • Registered Users Posts: 10,300 ✭✭✭✭ cj maxx

    Jayus what a nights so called sleep. MS has always affected my right side ((tremors ) but tonight my left foot is trembling like a leaf. Is that a sign of progression or just a new symptom in people’s minds ?

  • Registered Users Posts: 99 ✭✭ Salmotrutta

    Are you RRMS or progressive? If RRMS it sounds like a new symptom, but need to talk to your MS team/nurse really. Were you tired? I've a twitch/spasm in my left foot that comes on late in the evening when I'm pretty tired, or earlier if I'm just wrecked in general. Goes away after a good sleep. I regard it as my body telling me it's time to go to bed now.

  • Registered Users Posts: 10,300 ✭✭✭✭ cj maxx

    RRMS was my diagnosis. I was tired, and forgot my last ( 6th ) baclofen tablet. Tremors had always been on my right side.

  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,365 Mod ✭✭✭✭ byhookorbycrook

    Are you breeding an infection?

  • Registered Users Posts: 223 ✭✭ eimsRV

    Happy new year all!

    I’m looking for feedback on Tysabri, Octevus or Kesimpta please?

    I had a relapse in October, followed by an mri which confirmed 2 new lesions on my spine. I’d completed a course of Mavenclad (2 years from jan 2020) and nothing since then.

    Due to confirmation of relapse I’ve options of Tysabri, Octevus and Kesimpta. I just had bloods today to check for JC+, etc. so I’ve a few weeks to research options. MS nurse in Beaumont gave me the pharma brochures with details

    I feel very down over the whole thing and would love to just ignore it all, but I need to consider which options would suit me better. This will be the 4th treatment for me.

    thanks x

  • Registered Users Posts: 11,565 ✭✭✭✭ GBX

    Currently on Kesimpta. I was only diagnosed in April 2022. So far it's been fine for me apart from a reaction on the initial dose.

  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,365 Mod ✭✭✭✭ byhookorbycrook

    The link below allows you to compare treatments. I'm on Tysabri since 2009 and it has been good for me. It's an infusion once a month. The big drawback to Tysabri is PML.

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  • Registered Users Posts: 324 ✭✭ Carrie6OD

    My sons play rugby and I’ve never watched them play due to the lack of seating / place to lean at the side of the pitches. Does anyone have any suggestions or ways to help me enjoy this experience with my boys? Many thanks in advance