MS in all its glory

cj maxx

I looked into Yoga classes a few years ago but right now all I'm trying is to sleep and not fall over. I used to have the dream of getting HSCT in Mexico but all it would do now would be to let me walk with a stick which I hate. For someone who 4/5 years ago could walk hilly ground to someone who is nervous walking down hill on a pavement is scary . If I can still walk with stick in 1 or 2 years time I'll be happy enough. Sorry for bringing you down but I can't see anything but sitting in this chair for me . I suppose after 9 years since being diagnosed I'm finally accepting it . But before I retire I'll set things right .

Though I must look into Gabapentin . Can gp prescribe it or Neurologist

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.

I once attempted yoga though not with MS Ireland. My body went into horrendous spasms all over, I said never again. At that point I didn’t realise my body spasms were due to underlying MS. Once I mentioned spasms in passing to an ED consultant, he put it down to electrolyte issues owing to my ileostomy and short bowel.

Nigel Fairservice

Does anyone here have any experience of Mavenclad as a DMD? My neurologist has recommended I move on to it from Tecfidera. Thanks.

murria

Hi Nigel. I personally haven't taken Mavenclad but my 30 year old daughter has. She was diagnosed 6 years ago and was on Copaxone for two years. She took Mavenclad in 2020 and 2021 and has been relapse and symptom free since, apart from an occasional leg buzzing if she has an infection. There is a great group on FB called Mavenclad (Cladribine) for MS that we found really helpful in the early and deciding stages.

Nigel Fairservice

https://www.boards.ie/discussion/comment/121860730#Comment_121860730

Thanks for the feedback murria. I joined the FB group you recommended. I'm starting Mavenclad on Monday. Glad to hear it went well for your daughter.

murria

Hope it goes well for you Nigel. It seems to be a really good option for a lot of people. It was recommended to take it at night to avoid side effects. My daughter had practically no side effects except fatigue at around the 3 month stage each year. She was able to continue working full time plus she teaches yoga. She also follows the OMS lifestyle. Best of luck.

https://www.boards.ie/discussion/comment/121842739#Comment_121842739

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.

How does yoga actually work for MS. I’ve no doubt it helps some people, but as I said the only time I ever attempted it put me right off. The idea of holding my body in any one position for any length of time wouldn’t likely work out for me, as it would likely lead to increased symptoms. I hear people with MS swear by it but the most recent context I heard the guy swearing by it went downhill rapidly and died. ☹️ I’m sure the two are not connected in any way. I feel I have to keep moving slightly all the time, I may be ignorant about yoga but the last I knew of it you hold posts and do breathing techniques.

The time I tried it was in a gym, before I knew I had MS even though trying to stave off weird symptoms which I thought must relate to a general state of unfitness following a series of major surgeries. All women on their mats, I didn’t know the etiquette. Upon being instructed to take up a position my muscles all went into strong spasms and I screamed out automatically. The women were absolutely appalled at me. The instructor suggested I was “more suited to wheelchair yoga”. She obviously knew something was amiss, but I was just upset as I seemed to be so pathetic compared to all these very flexible ladies who were mostly a lot older that me.

murria

Recode the site, that class sounds like an awful experience for you, no wonder you didn't want to try it again. I'm dropping a couple of links that will explain (better than I can) the benefits of yoga for MS. Both teachers have MS and there are free resources on the sites.

Taming the Walrus - Yoga and Breathwork for a Better Life

Yoga for MS - Muscle Strengthening | Multiple Sclerosis Society UK (mssociety.org.uk)

cj maxx

Seemingly the classes near me only do online classes .

https://www.boards.ie/discussion/comment/121865731#Comment_121865731

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.

I’ve done breathing exercises and am familiar with the so-called box breathing.

Atm I’m in a flare-up which is affecting me several ways, though I’m kind of more at peace than I have been before I got the Gabapentin. Both feet are catching on the floor very easily, due to bilateral foot drop, trying to send me tumbling forward over past day, last two weeks I’ve been “choking” on my own saliva, sending me into repeated spasms of coughing. I seem to get surprised when a flow of saliva arrives in my throat and goes down the wrong way, I haven’t felt it in my mouth which is quite numb as if the dentist had injected lidocaine in my tongue. This is happening all the time as I walk around. Surprisingly eating/swallowing at the minute is not too bad as it has been during previous episodes.

I’m getting quite out of breath for nothing, find it very hard to control my breathing. This happened before. It will likely pass although over time things have a habit of catching up as an increased level of disability.

Still not a word of next appointment. Don’t think I’ll ever be put on treatment if I’m to be honest about it. It’s a boat I missed thanks to doctors as useful to me as a chocolate teapot

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.

https://www.boards.ie/discussion/comment/121903343#Comment_121903343

Fortunately I don’t need to use the wheelchair yet, but I am getting very familiar with it so as it will ve slightly less daunting when the time comes that I need it to get me around more. This week I had “drop-foot” in both feet, and both knees buckling, so I get reminded every now and then that they are likely to stop working efficiently enough to get around. And I love to get around!!

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.

Got letter from SVUH, next appointment 6th June in the MS Clinic. Not exactly expeditious, but why any hurry when I can’t be offered any treatment. ¯\_(ツ)_/¯

However in meantime the gynae issue has re-emerged quite badly, no way to assess what’s causing ongoing symptoms without removing the uterus in that very complicated surgery to remove organ from spine where it’s tethered. I don’t seem to have any real choice. Maybe time to get it done before Prof Tubridy.

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.

past two days would have been sh1te only for my medications which keep me mentally balanced. Except the medications may need adjusting. I was given 300mg Gabapentin to take in the evening for the Restless Limb Syndrome, works sublimely well.

To deal with the the spasticity and cramps I was prescribed “up to 3 Baclofen tablets” per day. I have tried one, takes 2 to take away the muscle cramps and spasticity in my legs, does it remarkably well.

However this seems to be at the expense of some troublesome symptoms. Not sure how much it’s the medication combo and and MS flare-up as I’ve experienced some of this without any palliative meds when in a situation of flare during RRMS that wasn’t recognised because of other medical stuff clouding the picture.

I’m falling over to the left a lot, this evening couldn’t stop myself walking across the way nearly off the footpath, fairly embarassing as it looked like I was badly drunk except for the stick. Two lads had to walk out on the road to pass me. I’ve nearly tumbled down totally (left ways) twice. If I didn’t have MS I would have thought I had a brain tumour it is so one-sided. At same time one or two of the fingers of my left hand are moving in spares totally on their own. At same time sight in right eye is blurred, sore to move it. Obviously a bit of inflammatory flare-up, but no treatment can be given because of HPV status, where because of previous major surgery I can’t be evaluated for cancer short of a massive op to remove uterus from my spine.

I can cease Baclofen to see how I am, as I’ve not been on it long. Re Gabapentin, I’m on that long enough for it to be hazardous to come off without medical supervision. Already had two seizures with MS, it could be very unsafe to cut off suddenly.

Anyone else had side effects with the combo of these meds? Or experienced of side effects recently Baclofen dosage? Gabapentin 300mg alone had allowed me to function perfectly.

gamerguy1

Recode the site, you seem to be having a rough time of it. Flareup can take months to get over and you will be left with some of the problems you are having. Baclofen and gabapentin are quite similar to each other, you aren't on a high dose of either. Maybe stop 1 of them and increase the dosage on the other might help. Muscle weakness might be happening or just general deconditioning of muscles.

byhookorbycrook

Recode, have you attended a neuro physio? I find mine really good. There's an app she uses which has my lists of exercies with videos and you fill in what you have done each day. I'm sorry life is so shyte for you right now.

Gabapentin/baclofen must be tapered off very carefully and I wouldn't do so without consulting one of your neuro "team." I use Baclofen for spasticity and am on quite a high dose (3 x 30 daily) and on a very high dose of Gabapentin ( 3 x 900 )for nerve pain. It's a delicate balance (sorry) between being loose enough to move more freely with the baclofen and too loose to fall over.

Nigel Fairservice

My Mavenclad treatment seems to be going OK. I'm on my second week of tablets and no noticeable side affects so far. My old medication, Tecfidera, used to make me feel like I was wearing a scratchy wooly jumper all over my body. No more tablets for 1 year after Friday all going well.

gamerguy1

https://www.boards.ie/discussion/comment/122001022#Comment_122001022

Good to hear something about mavenclad, it's a treatment I might try after tysabri. It's supposed to be have very good efficacy. Id prefer try it than ocrevus. No side effects is a good thing to hear. You are free for a year now.

cj maxx

I’ve done absolutely nothing these last 2moths . I need to get out and walk , even if it’s just 10 yards

bookworms

Me too. The weather hasn't exactly co-operated recently. Starting a physio programme with MS Ireland in 2 weeks, so hopefully that will kick-start me again.

gamerguy1

Ive done nothing the last 3 months. Only go to hospital for treatment and that's it. Ms Ireland physio programme is great but it's only online isn't it. Used to love it when it was in a group.

bookworms

It is online, but there are some in person programs too I believe. I love the online, means I don't have to drive somewhere, then worry about driving home because I am tired. If you contact your regional MS Ireland support worker, they might me able to help finding more group/in person classes?

gamerguy1

Some people like online physio, I just couldn't get into it like I did with in person physio. I used to be tired from it too and driving home was tough. I might try online again just to get motivated again, they have a few different programmes going, not sure which 1 is best.

bookworms

I'm sure one of the physios would talk to you to see where you are at and maybe suggest a suitable programme. They might know of an in person class near you too. Hopefully you will find something that suits.

gamerguy1

I went to HSE physio but they don't do anything like ms society physios do. Just given a list of exercises to do at home. I did few assessments with online physios and was told what class to do. I just feel worse the last few months and could be just lazy for not doing the online classes. No in-person classes near me.