MS in all its glory

Putting out the bins and stooping down is scary as I keep thinking I’ll topple over, which has happened before .

on the cold weather , I preferred it as it stiffened my weak leg so I could walk steadily . One thing I did notice about weather , it’s not so much heat related as heat combined with humidity . Late July is awful in humid weather and I wear cooling bands on arms and ankles , but I know from sun holidays that it’s more humidity than heat that knackers me .

Got a very detailed report sent to me by gynae surgeon, main copy of which has gone to Prof Tubridy, for purpose of risk-benefit analysis to inform me about the wisdom or otherwise to proceed with an exceptionally complicated hysterectomy. So have to hear back from MS Clinic now.

On a positive note local tour operators in Costa Rica are more than happy to offer me disabled services. Some of them at a voluntary donation, others at a modest cost. The government is particularly in favour of specialised rather than mass tourism. It’s overall not cheap but they have a policy for providing to disability needs so disabled people aren’t fleeced.

I’ve booked with Travel Department who are running their first ever Costa Rica tour this year, and it is the most progressive country in the world as regards eco-tourism, and the most functional country in Central America, having been steered away from illegal drug production/gangs to sustainable tourism as a means of living for locals. It’s famous for its Sloths and Toucans and huge biodiversity, and has developed interesting ways of assisting disabled travellers to get around the jungles, up mountains etc.

I was also told that Uganda can cater for disability and lads will literally carry you in a contraption to see gorillas.

I went to the shop to buy a topup for ESB . Of course I dropped the card on the road ,and under the car . The looks I was getting trying to retrieve it . ! I must have looked like I was full drunk and rolling on the footpath for fun 😷

Curious to read a bit more about this treatment, although resetting immune systems is a risky business. If we were all to set up a GoFundMe for MS treatment there’d be quite the stretch on people’s charity.

I’d be beyond this treatment now anyway unless it came with a re-myelination and regrowth of brain cells. Then I’d set up a GoFundMe!

😁

My shrivelled walnut of a brain, with the classic white Dawson’s Fingers pointing out horizontally from the ventricles.

I was exposed to this banned drug in Utero, had to go for cancer testing, but I see a lot of autoimmune stuff may be related.

My first trial, as the rain relented!

Just had a look at the site, I’m not eligible because I haven’t been given any conventional treatment.

I find the “MS nurse service” to be pretty useless to me as they too seem to only be able to help when you are being actively treated. It means if you fall into the category of progressive untreatable disease there’s nothing out there for you, as treatment seems to be a qualifying prerequisite. Yet Prof Tubs said last visit he was disappointed I hadn’t been with the nurse on the team. The nurses are under such pressure it seems they can’t deal with all attendees of the clinic.

I’m finding Irish produced CBD oil is very helpful to muscle spasms. If you take enough of it, expensive stuff. I would like to do a nice leisure trip to Netherlands and take some edible weed in a small amount. Large amounts do not suit me at all, but I’m curious to learn what the full chemicals of the cannabis plant might, or indeed might not, do for me. My relatives are terrified of the thoughts of me taking weed and trying to talk me out of it. Of course they are cautiously looking out for me and I appreciate their concern.

In recent weeks the right sided Restless Limb syndrome was driving me ballistic at night, it was like pure torture and kept me awake kicking and waving arm all night long, and if I did fall asleep would be there the instant I woke up again. In fact would awaken me. Due to lack of inhibitory signals getting through an area or two of my spine. Our nervous systems are really complex and always on the move as long as there’s life in us. Without inhibitory signals we’d be having restless limbs, cramps, seizures.

I went to my GP yesterday, he prescribed Gabapentin, extra calcium, and domperidine for sluggish gastric emptying when it occurs. CJ, your appetite might be improved with domperidone (motilium) if you have slow gastric emptying. Our digestive and other systems have a big nerve supply that can be so affected.by MS. The Gabapebtin seems to be working absolute wonders re restless limbs, fingers crossed! It has me feeling terrific and I’m presently now functioning much better!

The CBD seems to help prevent the muscle spasms, I typically get abdominal spasms when trying to het out of bed or pulling clothing on, and hand spasms. I have to take several droppers full for it to work for me, and it’s expensive. My GP said if I wanted he would prescribe Baclofen.

It’s always difficult to know if CBD works, and what dose to take, but it can’t be a coincidence that my cramps ceased upon taking it, although it has had no other benefit.

The Gabapentin is extremely effective at stopping the horrible sensations. My legs are less spastic with it too, making it that bit easier to walk, and I’m feeling very positive and able to think much more clearly.

If any of ye with MS don’t have any kind of medical card, eg if you are somewhat over the limit in income/savings etc, do as I did and apply for the GP Visit Card, it’s been a godsend to me as I’ve had to go so often for tweaking medications etc. The important thing is to get your GP to fill out the form so as it is clearly understood how you stand to rely on GP services. They ask you for all savings details and their proof, employment/income, ID, PPS, tax return. It’s a bit of a pain filling it all out online, and I had to go through a couple of “computer says no” hurdles, but when I posted the form manually filled out by my GP, to the doctor assessing my case, I was very quickly given a Yes.

Just back from meat branch MS Jreland AGM, where an excellent new book was promoted “Living Well with Multiple Sclerosis” by Trevis L. Gleason, with Emma Rogan, published by https://coffeetownpress.com/

ISBN 978-1-68492-138-3

It really does describe the experience of having MS so very well, and what a lovely guy Trevis is. He’s launching it in his native Seattle in next couple of days and later in Ireland. It’s a great book to have to relatives, friends and even doctors to read so they can comprehend what living with the disease is like.

I’m doing a birthday fundraising for MS Ireland, detailed in my blog here:

This organisation is coming to Dublin next month and organisation a sailing day in conjunction with MS Ireland. Sounds to be a great opportunity.