MS in all its glory

tohaltuwi

https://www.boards.ie/discussion/comment/122268287#Comment_122268287

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.

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.

tohaltuwi

https://www.boards.ie/discussion/comment/122268287#Comment_122268287

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 🤣

byhookorbycrook

https://www.boards.ie/discussion/comment/122226437#Comment_122226437

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

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.

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.

tohaltuwi

https://www.oleo.ie/blog/medical-cannabis-ireland/

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.

byhookorbycrook

Could you get Sativex?

tohaltuwi

https://www.boards.ie/discussion/comment/122276109#Comment_122276109

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.

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)_/¯

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! 🤣

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 .

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.

tohaltuwi

https://www.boards.ie/discussion/comment/122289693#Comment_122289693

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.

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

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

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 .

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.

tohaltuwi

https://www.boards.ie/discussion/comment/122299107#Comment_122299107

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.

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.

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.

tohaltuwi

https://www.medscape.com/viewarticle/multiple-sclerosis-med-nearly-eliminates-disease-activity-2024a1000aio

Worth a read…

Novel drug seems to be particularly effective in controlling MS

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.

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

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?

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.

Nigel Fairservice

https://www.boards.ie/discussion/comment/122335496#Comment_122335496

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.

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 .

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

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

cj maxx

A MMD is what I’m looking for . I thought that since I am already diagnosed that I’d be seen fairly soon . What DMD’s are available to me I don’t know , or what is the best . I was on avonex so looking for a better one

gamerguy1

Its quite odd that you haven't seen a consultant yet since you were diagnosed. You should have been offered a DMD as soon as you were diagnosed too. I'd be chasing that up, shout louder and you will be heard. Plenty of much better dmds out there now ,avonex is old. You have a choice of tablets or infusion that are much stronger than avonex. They all good it's about finding one that suits your lifestyle.

tohaltuwi

https://www.boards.ie/discussion/comment/122371164#Comment_122371164

nothing’s odd in fuerking Irish neurology, ffs. On and off I consider suicide and have told SVUH who keep losing records and “ a t consenting without them”. I am angry, angry, angry.

cj maxx

https://www.boards.ie/discussion/comment/122371164#Comment_122371164

I was but since being diagnosed I’ve moved from south to north and to a different trust . I was signed off Avonex for liver issues. The last few months have seen a decline in my ability that’s , imo , quite drastic . I know a DMD won’t change that but I feel like I’m being lost in the system.

gamerguy1

Moving around has made it more difficult to keep track of you I suppose. Still you should be on the system, maybe a go could get you onto a consultant faster. My ability has declined fast the last 6 months too, drastically fast. A DMD would help slow down the progression and you should get the strongest one.

tohaltuwi

I have an appointment next month with a respiratory consultant to try to see what is my best strategy to deal with recurrent aspiration pneumonia, I seem to spend at least a quarter of my time on amoxicillin, always sets in during a time of multiple episodes of choking on my own saliva. A speech therapist told me in my case it’s due to lack of sensory feedback from my mouth urging timely swallowing. At same time my speech is just beginning to be affected at times.

If you progress to the late stage of MS, and if no other unrelated disease intervenes, and all else being equal, this is what claims you, indeed it’s what ends the lives of many with serious neuro issues. There’s no way of really eliminating it, but perhaps lessening its occurrence. The speech therapist said to try and remember to swallow every time I see something or other, but this doesn’t work during sleep and it is very hard to keep up consciously thinking to do something that is an automatic function in the majority.

Has anyone here being dealing with this issue, and how do you cope with it?

cj maxx

No I haven’t had any of those symptoms so I can’t help . Is there anyone else from a speech therapist you can see . Have you contacted your MS nurse about this ?
Though my leg and foot are killing me after my last fall. Another trip to A&E on Monday for an X-ray . Typical , the first time in years I had to go and 2 weeks later I’m back

tohaltuwi

I would be more inclined to go to a minor injuries clinic for the Xray rather than spend 25 hours on a chair in A&E, but I’m Dublin based. Well and good if it’s not broken and even if it is, might be managed by the clinic as when happened when I broke my foot. Any way of avoiding the horrible ED. But if you are located well away from one of these facilities you don’t have that choice.

MS nurse, lol. My one and only attempt to contact her was met with “return to your GP”. SVUH is a joke of a hospital, they managed to fail to see one single one of my MRIs and told me diagnostic process has to start at square one again, even though I have symptoms of advanced secondary progressive MS. I have a complaint in with the Ombudsman. Several other people I know first hand, have had this fate in SVUH, and the clinic doctor even had the gumption to say “records can go astray when you get MRIs taken at a different hospital, it’s not at all unusual for a patient to find themselves in your position”.

Also she had the gumption to say “at least you don’t have Motor Neuron Disease or Parkinson’s “.

Completely tone deaf staff at that clinic.

cj maxx

Strangely I got diagnosed in SVUH and thought it was OK , though I had my ex-wifes private Insurance so probably made a massive difference . Also that was in 2015

cj maxx

No minor injury clinic near me and I'm in NI . I 'm pretty sure nothing is broken as it's getting better, as in sharp pain when I stand up is gone. Though there is still pain standing on my right foot and the back of my leg (hamstring ?) so I'd like to make sure as walking on a stick is hard when you can't put weight on your 'good' leg.

tohaltuwi

https://www.boards.ie/discussion/comment/122381087#Comment_122381087

private insurance wouldn’t make any difference in a public only clinic which SVUH MS Clinic is. None of the consultants are seeing patients privately as they have full case loads with increased population & not enough neuros coming on board. Other people I know from MS Ireland socials have had similar experience of the clinic as myself. One was attending 3 years before diagnosis, files getting lost etc. The single nurse refers you back to GP “unless you are on DMT, although I think they have got an other nurse now. I think I won’t be given treatment now as it’s likely way too late, but the original intention of the Prof was to offer me Ocrevus, but then communications failed and none of my MRIs got to clinic until I hand delivered copies I had obtained recently. There’s a huge overall problem with SVUH, in all departments where communication is paper only.

tohaltuwi

https://www.boards.ie/discussion/comment/122381331#Comment_122381331

It’s a real pity there’s no injury clinic as you are in and out in less than 2 hours, with treatment plan, and really only if surgery is needed are you then referred to a hospital with all preliminary images & assessment t done. You do want to make sure you do the right thing by your “good leg”.

cj maxx

https://www.boards.ie/discussion/comment/122387223#Comment_122387223

I didn’t know the neurologists didn’t do private work now . They did in 2015 . I was there for about 4 years before diagnosis doing mri’s lumbar punctures etc.

tohaltuwi

https://www.boards.ie/discussion/comment/122398675#Comment_122398675

they do in theory, but none of them around Dublin are taking on new patients. Full workloads. It’s worse that trying to get a GP. 2015 is a very long time ago in medicine.

On an up note, I’ve been granted the Ming Term Illness card, with an OT told me was a prerequisite for qualifying for any kind of assistance from the HSE at my age. Not that assistance would be forthcoming, but it’s another piece of jigsaw in place.

eimsRV

hi all,

I was prescribed Baclofen to help with increased leg cramping and spasticity. However it’s out of stock at chemist, who say it’s a supplier issue. Anyone know if it’s a longer term supply issues? And if there is an alternative?

Will check with MS nurse tomorrow too. Thanks!

cj maxx

I had a fall last week which has seemed to ease , but all of a sudden I seem to have hurt ribs . I can’t figure it out

cj maxx

I never heard that , though I’m in NI . The last time I skipped my 6 a day I fell head over arse so I hope it’s not long term

gamerguy1

There seems to be shortage of baclofen for some reason. I get different brand every month luckily. Teva,strides are the only brands available that I can get. Consultant said some people only can get tizanadine which is different drug but same as baclofen he said.

tohaltuwi

I don’t want to say much here, but I got an abject apology of absolute admission of my being wronged,from my consultant regarding trusses I complained about. I had a special meeting soon. Fair dues to the consultant.

Re Baclofen I keep having bits and pieces of products in different sets, none of them add up to total needs. On the other hand plenty of Gabapebtin which does a great job on other things as well as spasticity.

We often get joint pains, as joints get sprained without sufficient muscular support. My GP prescribes rub-on Etoflam gel which is pretty effective. I find this really helpful in some forms of MS pain.

just over a bout of aspiration pneumonia of left lower lobe, pending respiratory consultant as this is a recurrent issue .

Gabapentin is a drug that in my experience. I’m on 300mg taken later in the day, but this dosage isn’t set in stone. Start off with minimum, that’s essential. Of course it has side effects, but in my own particular experience of 300mg it greatly finishes the intense restless leg syndrome I get right side in particular, indeed finished the entire “restless body” syndrome that is the core of it. It reduces spasticity too.

My personal advice re Gabapentin Side-effects: over first 5 days let the drug bed-in: don’t do a trying serious, don’t drive or operate machinery, see how it goes. Often the negative side effects then settle down

One common side effect that may remain is a very slight twitchiness of muscles you may feel drowsy, yet it’s not quite like a sleeping tablet in that you can keep yourself pretty alert, alert enough to drive. In fact you can be quite focused when driving and less easily distracted, on lower or familiar doses. You need to be are and careful no matter what.

gamerguy1

tohaltuwi you are taking both baclofen and gabapentin for spasticity and spasms,that's quite a high dose of something that has quite the same effect on that symptom. If your consultant is happy with that so be it. Not everyone gets side effects from them but they do take a few days to settle in. I only take baclofen and don't notice any relief from it but if I don't take it then I'm a mess so maybe it does do something