MS in all its glory

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.

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 🤣

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.

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.

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! 🤣

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.

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

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 .

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.

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.

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?

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

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

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.

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

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

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.

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.

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

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.