MS in all its glory

cj maxx

https://www.boards.ie/discussion/comment/121570178#Comment_121570178

I must get one .I've had a few falls , thankfully not serious , but as you say getting up is a real struggle. One thing I've tried to stop is turning to the right. It's always by turning to the right that I fall .

https://www.boards.ie/discussion/comment/121570711#Comment_121570711

The way I have to get up in my own place is by crawling to my bed after I regain sone movement in my limbs and pulling myself into it, recovering for some hours and slowly attempting to get up from there. When I fall I tend to lose all feeling for a while, like as if I’ve broken my spine. I think it might be connected with the necrotic fluid filled lesion and shift of spinal fluid compressing the cord. People who observed me having a fall said I went into a convulsion immediately and wasn’t responding to questions and making no sense for a while.

cj maxx

https://www.boards.ie/discussion/comment/121570790#Comment_121570790

I do the same. I have one of those aids for getting up that slide under the mattress.

Went to Nutgrove this afternoon. I’ve enough feel in legs when I sit down to drive, but when I stand up almost all the feeling has gone out of my legs, and even with the rollator it’s very hard to keep myself upright at all as there’s tremendous weakness into my arms, especially when standing. I’m a shaking mess. A 75 year old disabled lady came to my aid at the shops and a I met a 88 year old man, who is a neighbour, he is very alarmed at how I’ve suddenly turned and said I don’t look well and should get attention.

However, I’m scheduled for a esophago-gastro-duodenoscopy tomorrow evening in the Beacon. Want to get that done with. I know something’s very wrong, but not sure what exactly is up.

Had my esophagus-gastro-duodenoscopy yesterday evening, watched it on the screen. Ulcers healed, but of course evidence of the chronic reflux which I take treatment for. I was really relaxed during the procedure, and the staff were really lovely to me. 😊

I got advice to contact MS nurse team re symptoms, but seems they are unstaffed and overworked, don’t think I’m gonna get anywhere this way.

Tevenie

Hi, could anyone advise me, please? I was diagnosed with MS 10 years ago though my first relapse, optical neuritis, was in 1994. I have been fine mostly but had a few smaller symptoms that I brushed off over the years, very mild numbness, odd sensations, but nothing bad until 2012 when I lost the sight in one eye totally, even after that it took two years for the diagnoses 🙄

I have been pretty much fine since the diagnosis, I was put on Tecfidera but it made me extremely ill and they took me off it again. I have not been on a DMD since then - maybe three years ago.

For the last six to eight months I feel like I am having a huge amount of cognitive difficulty - my concentration levels are desperate, and my ability to understand things that I used to be able to deal with has declined massively. I do accounts for work so this is really impacting my work. I haven't spoken to my employer about it because I kept thinking that it would be okay and I could work it out, but increasingly I realise that it is not going to be okay and I need to talk to them about what a crap job I am doing at the moment. They will be fine.

What is bothering me is that I can't continue doing the job I have done for the last 40 odd years. I am okay with getting a less demanding job but I have no way to support myself if I leave my job - is cognitive difficulty enough of a disablement to get state support? I have an appointment with my neuro at the end of January and I will talk to him about it but I just wanted to hear other people's experiences. I can't go on the way I am going.

Thanks.

https://www.boards.ie/discussion/comment/121591489#Comment_121591489

This is awful. Imagine losing total sight in one eye and no cop on when it happened! Some neurologists are great as long as you tell them what your diagnosis probably is. 🤷‍♀️

Conductive fog is horrendous, I’ve been getting them to an immense degree over past year, some times much worse than others. I said it to Prof Tubridy. His answer was that unfortunately it doesn’t respond to any one therapy in particular.

I know I couldn’t hold down any kind of a job now, in spite of my innate intelligence and creativity. I could stare at something for hours on end and wonder what I’m staring at and why and what I was originally intending to do. All I can do is offer my greatest empathy. 🥲

If people have tricks I’d love to know them myself. Maybe swimming in the cold sea would wake me up, but I think I’d drown first! And I couldn’t get in and out of the sea! I feel myself if I were better able to exercise I’d be somewhat better in my cognition 🧐

Tevenie

https://www.boards.ie/discussion/comment/121492478#Comment_121492478

https://www.doctorgretchenhawley.com/

I think this lady might help. I think she has written a book.

I got a return email from the MS Nurse. She had looked at my file, says there’s a huge amount of very established old damage and not surprising I could tip over like that, and suggested it is highly likely to be a coincidental infection somewhere in my body triggering it. Indeed I think a tooth needs to come out, I meant to have this attended to before Christmas but I had got Covid, pneumonia, then Mexico, then kind of went into the background, but can still notice jabs of pain from it. The upcoming MRI will tell if there’s additional new lesions.

It’s so ironic that I built up so much pathology in plain sight of numerous physicians I attended for various things.

Anybody else get this horrible anxiety-like sensation that racks through you from the pit of your stomach.. best described in my blog post rather than re typing it all here: 🧐

https://msmartinecom.wordpress.com/2024/01/15/visceral-anxiety/

Does anybody keep a CD copy of their own MRIs. Got scan today and requested copy, which I’ll look at later out of curiosity. SVUH PhD AI Radiology researchers Brendan Kelly, a thoroughly nice individual, said at the last MS seminar in Athlone that it was a really good idea to try and keep your own copies.

Gremlinertia

https://www.boards.ie/discussion/comment/121625086#Comment_121625086

I've kept mine, unrelated health issues but it was handy enough to copy to USB since disc readers are getting rare

As Prof Tubridy wants me to be clear of HPV before treatment, I did a home test with a lab company called “Let’s Get Checked” and alas it came back again positive for HPV type 16, a highly pathogenic one. Colposcopy won’t work because of location of cervix (uterus is located back against spine by adhesions) so in effect to keep me safe I ideally need a very complicated hysterectomy. That should have been done at time of colectomy. Even without the immune suppression of MS treatment the virus could cause cancer.

I just found this in my junk mail, sounds quite ideal for me, and reasonably priced.

Anyone here used this product?

Gremlinertia

Have you a medical supply shop near you that you could check out? Or know a physio that would check it out for you?

ednwireland

Are you in Dublin ? Looks like these guys.

https://www.beechfieldhealthcare.ie/dash-eco-powerchair.html

They have a shop in Dublin or at least a local number to ring them on. They Might be able to help or arrange a demo ?

As the repeat HPV test showed I continue to have the cervical cancer causing variant 16, I knew my choices were limited. Attended GP today, he agreed I need that hysterectomy which would be especially complex owing to the mass of adhesions from previous previous colectomy and the location of uterus attached to my spine. He has sent a request to the highly specialised surgeon to carry it out. It should have ideally been removed at same time as colectomy back in 2016 to prevent this very type of issue. Anyway I’m perpetually jinxed, so quel surprise 🤣

The voodoo doll has had another pin stuck in.

cj maxx

I was just popping in to see if anyone else had extra mobility issues with the cold snap . Normally this is perfect weather for me , but lately , even with 6 baclofen p/d my leg has been especially stiff . Usually cold dry weather makes my bad leg stronger but spacitity is shot

https://www.boards.ie/discussion/comment/121641931#Comment_121641931

I’m keeping my apartment warm, and in the icy weather I never venture out, not the windy weather. I’d be frozen to the spot, in moveable.

In the very funny Liveline thread in the Radio forum there’s a rule that goes if a Boardsie gets in air they have to mention to Joe about his bad leg. That’s the code word for being a thread follower. One of us got on air and asked Joe “How’s your leg?” “How’s me whaaa?” He replied. The thread went wild. So I always smile at the term “bad leg”.

I got onto Liveline 4 times, last time focussed on bad legs, much to amusement of the thread. Harmless bit of fun to relieve stressful situations.

The cold sends me immobile, the heat does too. I’m like a delicate plant that requires just the right temperature to function.

Temperature is notorious for disturbing nerve function in MS.,

https://youtu.be/i7Lr9H_qZYQ?feature=shared

My continued Video Blog 😁

cj maxx

But I used to love cold dry weather as it gave me a bit of strength in my ‘ bad leg 😷 but even with baclofen it’s got too stiff now .

Cold weather has always given me a lot of stiffness in legs, especially the left one, but I always thought it was entirely to do with cold weather and everyone had a stiff leg or two, same as I used to think everyone must have bad balance but made no deal of it. I think the lack of response from doctors when I would care to mention any of these things greatly discouraged me from pursuing it.

I was looking back at an older record from back in 2017 when I saw a neurologist at the Beacon, whom I didn’t like. He had told me “you have white lesions” and was most dismissive when I asked what they were, “time will tell if they are significant” was as much as I really got. I mentioned instance, a numb leg and hand, and bladder emptying itself, all dismissed. I saw on my later requested records he reported in lesions being present but that symptoms were likely to be “functional”, ie in my imagination.

Last year things took an abrupt sustained downward turn, and a private hospital where I spent 2 weeks being investigated could not help me, at least the general consultant de used to wash his hands. Prof Tubridy can get no info from him, asked my GP who could get no report from that consultant either. I got some of the records from the private hospital myself, where it is outlined I have findings consistent with MS including oligoclonal bands in CSF. Imagine undergoing a lumbar puncture and the doctor refusing to send on the findings to GP and neurologist, because that is what happened. I’ve been appalling treated by a couple of rotten doctors.

On a positive but slightly scary 😱 note I’ve got a fast-tracked appointment with the top-rated specialist gynae surgeon tomorrow. 3 days wait for an appointment, that beats ‘em all!

Attended the specialist surgeon who, although very nice about it, didn’t mince his words. The surgery would carry a significant risk of mortality, it would be a dangerous surgery, but if it means I could be saved from impending severe disability by being able to get MS treatment he would do it. As it is I cannot be monitored for ongoing cervical cancer risk because of changes in anatomy caused by previous surgery, so that risk is outstanding with or without MS treatment. However with MS treatment that risk is much increased.

To undergo this surgery it would very likely mean a fair time in ICU on a ventilator perhaps undergoing multiple operations to pack my insides to try and stop bleeding, multiple transfusions, and a very prolonged recovery time. Risk of causing kidney damage, intestinal damage, bladder damage, could end up with an extra stoma, never being able to have normal physical relations again.

He is going to issue with Prof Tubridy as well as the surgeon who performed my colectomy and my GP to discuss risk v benefit analysis, put it to me, and then let me have the final decision based on that. This dilemma could have actually been prevented had the surgeon who performed the colectomy performed a hysterectomy at the same time, as I was past reproductive time. ¯\_(ツ)_/¯

cj maxx

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 .

https://www.boards.ie/discussion/comment/121672945#Comment_121672945

The most basic of tasks can be a nightmare. Today I have lost almost all feeling below the knees my feet kept tripping me up even holding onto the supermarket trolley. Getting things out of the trolley onto the belt at checkout is another issue as my arms and hands have lost so much strength and dexterity. My fingers can hardly feel what they are attempting to do.

I don’t see myself getting treatment because it would require very risky surgery to reduce my gynaecologist cancer risk, which the expert surgeon says would carry a significant risk of bleeding to death on the operating table no matter how careful he would be.

Yet I’m going downhill rather quickly, and can’t see myself holding my independence that much longer. It’s really difficult living alone, but I do hugely value my independence.

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.

cj maxx

That’s good . I would never of thought of Costa Rica as a holiday destination .

https://www.boards.ie/discussion/comment/121708074#Comment_121708074

https://www.limitlesstravel.org/disabled-holidays/costa-rica

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.

cj maxx

That looks fantastic