MS in all its glory

I get the most peculiar of looks when I very suddenly start to wobble involuntarily if someone ones serenely comes within touching distance of me. Haven’t heard it described elsewhere but I start staggering all over the place, it’s embarrassing, and the looks I get as it takes onlookers by surprise. I think it is simply related to postural/truncal ataxia.

I dread when I see children racing blindly towards me, I have a terror of falling over onto the pavement and being unable to get up without the most massive fuss, as it would take two strong people to get me upright and I’d be wobbly all over. It would likely result in someone insisting on getting an ambulance as if an internal wait in an A&E is going to do anyone any good unless there’s been a significant injury that needs a scan or something.,

It is a bit experimental and only feasible in limited cases.

Got the lightweight power chair delivered today, it can build up some speed on the demo!

This outlines one of the studies regarding Gabapentin and MS, regarding spasticity. Since taking it for Restless Legs Syndrome I realise the sheer amount of muscle spasticity I had without the med. At times I could barely move a muscle, completely freer now in movement. And the slight jelliness of my legs is rather better than having them refusing to move when commanded. So I have no more restless twitching cramping limbs, I feel way more relaxed and much clearer in thought. For me 300mg is the effective dose, but it would be somewhat different for everyone, and as always one must work with the doctor. My eye muscles are better too, meaning I have better vision and can suppress any distracting double vision.

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.