MS in all its glory

whatever76

https://www.boards.ie/discussion/comment/120311255#Comment_120311255

Something like these maybe ? They foldable and easy to carry as I have one for going to beach/park - prob lighter ones out there this just give idea ! SUNMER Padded Camping Chairs - Set of 2 Deluxe Folding Chairs with Cup Holder and Side Pockets, Holds up to 120kg - Lightweight 3.3kg per Chair - Black & Grey : Amazon.co.uk: Sports & Outdoors

Carrie6OD

Thank you so much. I guess the issue is I don’t want to be the only one sitting on the sideline…:( but that’s definitely an option. I’ll keep searching for something possibly a little more discreet. Thank you

grizzcol2

how about something like this:

PEPE - Walking Stick with Seat Foldable (Height 34.2", Not Adjustable), Walking Stick Chair for Adults, Seat Walking sticks for Men and Women, Aluminium Walking Stick 3 Legs, Walking Cane Black : Amazon.co.uk: Health & Personal Care

cj maxx

https://www.boards.ie/discussion/comment/120311255#Comment_120311255

The only thing I can think of is to bring a deck chair or something. Or can you drive in close enough to see them.

cj maxx

I’ve been signed off Avonex due to liver function issues . So I’m not on anything at the minute. If i get the all clear I think I’ll go for Kesimpta

byhookorbycrook

https://www.boards.ie/discussion/comment/120318636#Comment_120318636

I tried to remain seated ( used to have little camping stool) but invariably had to get up and shout! People also tended to stand in front of me. Could bring one and rest now and again?

byhookorbycrook

Sorry to hear that CJ, but it might be a blessing in disguise, Avonex isn't very effective. I blame my time on it on how I'm declining now.

I was admitted through ED to a private hospital last night, having had a history of creeping neuropathy starting in feet, now affecting arms to some extent. Before Christmas I was ok but quietly watching my step in case my foot dragged. Have had a lot of pins and needles, now nearly numb all over.

After Christmas things started to get a little bit worse, had a few little trips and episodes of uncertainty as to where my legs are. GP ordered bloods, nothing showed, eg vitamin levels etc normal. Past week or so things got much worse, had a couple of falls but mostly able to grab onto something before hitting ground. Monday legs get away, came crashing down on my face, knocked myself out, ended up in a sizeable pool of blood. When I came around I couldn’t get up for ages, and after an hour managed somehow to get on all fours, and crawl to bed.

Enough was enough, living alone this was dangerous, so I presented to the private ED and was admitted as I was literally staggering around. They’ve run CT from head to pelvis (checking for paraneoplastic syndrome), to have MRI of brain & spine. Some years ago, elsewhere, a brain MR I showed white lesions but deemed stable on follow up a year later, so advised no further follow up needed unless I developed symptoms.

Physician attending me advised I could have any one of a lot of things, but the common likely suspects were obviously under scrutiny. I was told I’d likely have a spinal tap, maybe a nerve biopsy to detect peripheral demyelination. They are being extremely thorough, but the advancement of symptoms has come as a bit of a shock, to say the least. I’m a week or so away from being 62, but have had occasional (approx) three week long episodes of dragging right foot from since my 20s, about every six months to a year iirc.

cj maxx

https://www.boards.ie/discussion/comment/120332619#Comment_120332619

So do I . I live in a bungalow which has a rail to the door which I used going out and walk the 3 ft to the car. I can’t even do that 3ft now without my stick !

Carrie6OD

That looks perfect! Thank you

eimsRV

Hi all, having first Tysabri infusion end of this month. Can anyone share how they were after first infusion? Wondering if I should plan time off work, childcare etc. thanks

gamerguy1

https://www.boards.ie/discussion/comment/120340407#Comment_120340407

Hello, first infusion is 2 hours in the hospital, bring a book or something to do. Be well hydrated and just relax in there. You may be a little bit tired after it but that's it. You could be fine to go to work after it. Iv had over 80 infusions.

Still awaiting the visiting neurologist to call, I am told there is a firm appointment for her to see and review me tomorrow. Mobility very up and down, one day sort of half ok-ish, next day left thigh not working, following day that’s rather better but right foot sticking to ground at times. I’m not the person I was some weeks ago and considering I did a (my first ever) skydive on St Stephen’s Day, this is something of a shock. I’ve a constant feeling of zapping, mild electric shock like feelings running from neck through around a, around trunk and up to my face. Weird.

Registrar said it will be “an autoimmune neurological diagnosis” and that I will need ongoing treatments.

tanka006

Hi Davis Stocky Typographer,

Sorry to hear of your problems.

I have Primary Progressive MS (PPMS), I suffer exactly what you have described - which is why i am replying

My Neuroglist has me on an infusion of OCREVUS every six months.

For the electric shock problems, its terrible - i have been told that it is trigeminal neuralgia & i am on medication which has it under control

Good luck with all

Tanka

Kalimah

https://www.boards.ie/discussion/comment/120358695#Comment_120358695

Hope you're feeling a bit better today. Must be very worrying. Hopefully you can start on treatment soon.

GBX

Had annual follow up appointment with the neurologist yesterday. No further shows on the MRI so its as I was, thankfully.

Hope you get to the neurologist soon RTS 👍

At last the lovely visiting neurologist saw me, a genuinely warm, upbeat and compassionate person. Just talking to her is like therapy. She told me MRI is consistent with, but not diagnostically conclusive in itself of MS. I’m told I will undergo lumbar puncture today, and more bloods sent off to lab for to assess for all sorts of immune complexes & pathogens. She has an idea that a certain Covid vaccine may have played a role in triggering the cascade of evolving symptoms, as she has seen & heard about a fair bit of this phenomenon in past year.

The lumbar puncture was fun, at least my lung power was enough to screech the place down when the needle was being manipulated and hit the cord and sent was felt like an episode of electrocution down my left leg 😱😂 Prof found it a bit tricky to get the csf flowing, when it did it nicely filled the 5 vials.

byhookorbycrook

https://www.boards.ie/discussion/comment/120340407#Comment_120340407

You will be asked for a pee sample. I didn't realize that and had peed out every last drop before I got to the ward in case I'd be "caught short." I didn't realize they could release you for a pee during it! They will check your temperature, blood pressure ,O2 levels. You will also be asked lots of questions as to how you are etc.

I found I was tired after the 1st six, but that may have been due to a round trip of 8 hours. I would plan for an easy day if you can, but you shouldn't need to go to bed or anything. As Gamer said . be as hydrated as you can as this helps them get a vein. Wear a top that can be rolled up above your elbow for the canuala and BP cuff. I prefer to chat so never brought a book. I found it was helpful to compare notes to my neighbours, but each to their own. I'm on infusion 167 at this stage, no new lesions or relapses since starting, only wish I could have had Tysabri early on.

cj maxx

https://www.boards.ie/discussion/comment/120367483#Comment_120367483

Me too . There's been a big drop in my ability to walk the last couple of years. Maybe it would have given me an extra couple of years , though I've had symptoms since early childhood, so maybe not.

Long holiday weekend means it’s Monday til any possibly results from CSF start to come in. In meantime I’m doing my best to exercise doing the rounds of hospital ”quadrangle”. Sometimes I start out ok, think I’m doing great in spite of fizzy feelings whilst doing my short quick steps, then after 2 to 3 rounds a leg starts to give way and it becomes hazardous. It’s a far cry from the (first ever) skydive I took in Gran Canaria on St Stephen’s Day which required 90 degrees frontward extension of both legs to land in the sands dunes. I was a week bit uncertain at times on legs then, and have avoided steps and uneven surfaces for quite some time, but I had good strength in my thighs. Recently handwriting, (always in the style of a doctor 😂) has become absolutely cr@p, and even holding phone and tapping keys is “different” for want of a better word, my hands are “fizzy” and a bit less certain for want of expressing it better. I used to do quite fine drawing and artwork, I’ve had to very much lean in the Impressionist style, which I love anyway.

Was discharged from hospital to be followed up by neurologist in coming months. Lack of being able to locate previous abnormal MRI is certainly proving a diagnostic obstacle, and I will have to have further scans to demonstrate accumulation of lesions. All four limbs compromised, losing dexterity of hands and some of my prior ability to hold and carry things , GP was shocked at how much ground I have lost in a few weeks. Now my sense of taste is much altered, and not for the better, and I’m starting to bite tongue and lips as sensation is starting to alter in my face.

I’ve started drooling slightly, feels much like a dental anaesthetic just beginning to take hold. Both hands numb and tingly like the nerves are trapped, much like my legs. Typing on my phone starting to get slightly challenging, as is holding a cup of hot tea as I’m inclined to lose grip momentarily.

gamerguy1

Have you not been offered steroids as you could be having a relapse if it is ms you have. Very tough to be going through with what you have and not being given any treatment to help yo

https://www.boards.ie/discussion/comment/120407941#Comment_120407941

No, was seen by a visiting neurologist from the Beacon in Blackrock as a special request by General Medicine physician. When I turned up at ED after really struggling with rapidly decreasing mobility over days, they did a CT to rule out a brain bleed. A person in the queue after me presenting with some new onset neurological condition or relapse was told to go elsewhere as the hospital “doesn’t do neurology”. I had previously attended a neurologist here who went full time to Beaumont, he had noted an “abnormal amount of white lesions”, called me back a year later and there were no notable changes. Subsequently he upped sticks and the scan can’t be found. I contacted MS Ireland and they said to request a Freedom of Information for all records relating to me, and if scan is missing to file a formal complaint. They sent me the appropriate links.

Today has been the worst yet, even with a stick I could barely reach the chemist to collect a routine prescription, and my hands are starting to drop things. Perish the thought of MND, I witnessed that in a cousin, the rapidity is familiar but she didn’t get tingling, numbness or any paraesthesias.

Gremlinertia

As much as you might not want to go this route, have you thought of local political pressure?. The lack of services from neurologists, psychiatry etc down to lack of people to fill the positions is at this point more than the word crisis can cover. Have you an advocate to help with the admin element of it all?

I’m pretty good at admin stuff. I live alone and no siblings, no relatives living close etc, so things are tricky and could be one more so. It’s unreal how few neurologists there actually are, but I believe it’s never been a popular speciality, I suppose from past times where they tended to mostly diagnose horrible untreatable diseases. General Medicine doctors don’t want to touch neurological cases, the Emergency Medicine consultant admitted me as he didn’t want to turn me out as I was so inexplicably wobbly.

byhookorbycrook

Our neuro says that people prefer to specialize in things they can cure- she's not wrong! Recode, I'm so sorry to hear of your struggles. I really hope you can get some answers and treatment.

gamerguy1

Recode,if you have a definite diagnosis of ms then the neuro team should have an ms nurse that you can contact too. They are scarce too but would help you. Some gp's would give you a course of steroids. It's quite strange that you are not getting the treatment for it. If it is a relapse,iv had quite a few bad 1s then just relax sleep and don't stress. It will pass but it will take time. Iv been through a few without steroids. Left with the irreversible damage though but I manage.

I don’t have a definite diagnosis because of the lack of scans to compare mapping of lesions. I was mainly under the. Are of a general consultant who was keen to eliminate things like underlying Lupus and malignancy, and had great difficulty getting hold of a neurologist, the latter saying MRI looks like a case of MS, but needs more than one scan in time to make diagnosis. She wants me to return to her clinic in several months. GP is clueless as to what’s going on, he asked me what they said and I could only tell him what I’ve said here. He was taken aback when he called me from the waiting room and had to put a hand out to steady me. I had been to see him some weeks earlier re numbness of feet and lack of proprioception, which was subtly spreading up legs, but like walking with marshmallow shoes on a bouncy castle. Blood tests he ordered revealed nothing, and I was about to go back to him as the feeling had spread up beyond my knees, and hands were starting to get affected, even breathing muscles felt weary, but events overtook me when I fell and knocked myself out senseless in a pool of blood spray from my nose. When I came around I couldn’t move a limb and thought I’d broken my neck, but over a couple of hours I started to be able to move limbs and crawl to bed. A day later I got a taxi to Blackrock where I thought the neurologist would still be working.

There’s another similar type condition of demyelination of mainly the peripheral nerves called CIPD, sometimes regarded as the chronic version of Guillain-Barré Syndrome which is often but not always post an known infection (typically campylobacter) or post vaccination. I believe a nerve biopsy clinches the diagnosis of CIPD, but the general medicine consultant mentioned a brain biopsy at which I baulked, I said only if absolutely essential for diagnosis. Initially they had thought I might possibly have Guillain-Barré, but this was not the case. I was asked had I experienced diarrhoea in recent times, or travelled abroad, and stool samples were taken which proved normal. A general medicine registrar did mention about giving me something that might help relieve symptoms but it didn’t get implemented as the discharging consultant said “we can’t do anything to help you without a diagnosis”, I nodded, and then he asked me did I want another opinion, which I felt a bit odd. He also said “if you had cancer I’d know what to do with you, we’d be starting treatment straight away”. It all boils down to lack of neurologists and possibly poor record keeping.