MS in all its glory

GP said he can prescribe extra Gabapentin and if needed Baclofen but I am doing absolutely terrific on 300mg in the evening.

Before Gabapentin I couldn’t fuppin move my legs properly at all, my hands were becoming useless, I was shaking, I couldn’t think at all, and I was exhausted with the relentless impulse to shake my right foot and arm. I notice when dose fades during late afternoon I can feel the symptoms trying to break through and my left arm started to move in its own. I was have multiple muscle spasms in belly, thighs, calves, feet and hands.

The simple 300mg has revolutionised my functioning. I still have to balance with a stick, but I’m getting along a bit quicker, I have waaaay more energy, far less depressed, and feel I can be master of myself once more. I know the body grows tolerant to an extent of the drug, but starting low enough it can be raised, and is known to be very safe in the scheme of things. It has also stopped me getting the tremendous changes in blood pressure, atrial fibrillation and many of the horrible things the autonomic nervous system can do.

I know it’s not a cure or anything near it, but for the very first time u got relief from symptoms after being nearly suicidal. I googled symptom relievers and asked my GP could be ores tube it, he said “of course I will”. I find the MS nurse service not to be particularly helpful tbh, they are too busy simply overseeing disease modifying regimes to address anything else, and u was told to go to my GP for any advice or prescriptions as they are not sufficiently resourced to practice in the way they’d like to.

MS Ireland sent an email asking if I’d be interested in participating in an ongoing research questionnaire regarding experiences of people with MS. It is part of a PhD student’s supervised research in the Science department of Maynooth. I always love helping with this kind of project, so consented and filled out the first survey regarding supports, by family/friends, by peers with MS. Regarding the latter they asked to list online resources where you communicate with peers, and I specified Boards as one of them 😀

I was asked would I take part in this survey, not that I really understand what it’s about, but I’m always interested in cooperating with research. What neuro than have I had? None, but sure that will add to the statistic.

Has anybody here done the MS yoga or physio? I have been afraid to even try it before because of the severe cramps that happened pre Gabapentin any time I would attempt to “exercise” . In fact some years back I attended a physio post knee replacement and she remarked how my muscles were inordinately stiff and in knots all over. I found the physio especially difficult but persisted with it.

I love this guy, neurologist Aaron Boster, he explains things so aptly. In this video he was interrupted by his beautiful dog!

GP can prescribe Gabapentin no problem as mine did upon request. My body has sort of started getting “used to it” already, as the body does, dose is giving me comfort at night, but I could do with a daytime dose. Next time I’m talking to GP I will consider asking for 100mg for the day. I think I’m having a bit of a flare, as I’m getting a lot of coughing on eating & drinking and just plane saliva going the wrong way. This can lead to aspiration pneumonia so have to consider that if I get a fever or further symptoms.

The sailing program is unfortunately full, these events fill up in the blink of an eyelid. I’m on reserve list. Great opportunity for participating in something like that, and all free to the end user.

Unfortunately the sailing sessions on 10th April are booked up. These events get booked up within minutes of being advertised. I’m on a reserve list but I don’t suppose there’s much of a chance of getting an allocated spot.

I hate online anything. My operational devices are my phone (small screen fine for close up zoom meetings) or desktop pc. Neither a good set-up for exercise/yoga and neither is my home. My eyesight isn’t great for screens either as my eye muscles simply do not coordinate, so online useless to me. Surely other people with MS have very similar issues.

I hate online meetings of any sort tbh. Next week I’m attending this neuro rehab imaging project thingy in the Maldron Leopardstown, it’s a short journey for me. They offered online sessions, but I’d rather inconvenience myself with a journey than peek at a little screen trying to come in to get my spoke in.

It worked! Getting wheelchair to car boot with longer (heavier) ramps. They are superbly sturdy. The “beat” electric wheelchair fits in my CH-R with rear seats folded, along with ramps and shopping. Pretty good overall.

I’m really getting seriously upset by my chocking episodes. How do you cope with these? I don’t feel stuff going down until I’m almost gagging on it.

I feel it’s almost pointless contacting the “ brilliant nurse system” who are always too “too busy” dealing with other people. Really sick of being ignored.

Asked my GP today for Baclofen to deal with spastic leg muscles. I did a “lot” of walking (for me) around Kraków over the weekend and my muscles didn’t like it at all, but of course it’s extremely good for general health & fitness. GP had no problem prescribing and told me to start with one tablet a day and build up if necessary to three, and he would prescribe up to six if it turns out to be necessary.

He also demonstrated the way I should walk to keep the muscles stretched, which I kind of do instinctively if I have support of supermarket trolley or the rollater. I would use rollater but that I love to go out when grocery shopping and it doesn’t work well in a supermarket.

I’ve a bit of optic neuritis in the right eye at the minute, it hurts to move eye at back, and vision is cloudy, I keep trying to clean my right glasses lens! Have had this on and off over the years, but not severely. It was an early clue that wasn’t picked up on, even though optic disc was observed to have been grey and swollen by a team of GI doctors when I mentioned it at colitis clinic. By time I got referred to ophthalmologist months later it had resolved again.

I must remark that Poland is a remarkably disabled-friendly country for a holiday, apart from some historic architecture that does not lend itself to adaptability. Apart from being generally very friendly and hospitable with a can-do attitude, crossing even busiest roads is very comfortable, drivers always stop well ahead to make it known you are not expected to rush across the road.

Polish cities are served mainly by Ryanair, and the wheelchair assistance in Kraków Airport was terrific. Actually, locals were extremely helpful to staff on helping push my luggage case as the assistant pushed my not inconsiderable weight. There is a great spirit of co-operatives there. I was one of two disabled people boarding, and we were both afforded a lift up into the aircraft, boarded ahead of everyone else. No need for fast track for anything, we were put in front of everyone, that is the way over there with Ryanair or any other airline.