nav[aria-label="Primary Navigation"] { padding: 0; & ul { list-style: none; width: 100%; display: flex; flex-direction: row; justify-content: start; align-items: start; gap: 30px; padding: 0; & li { margin: 0; } & ul li { list-style: none; } } }

Child Item

MS in all its glory

Hi all,

I've being doing a lot of thinking lately (some may say too much) about what my future may hold, and as with many things in life there is a level of uncertainty that comes with that. But what is most uncertain is what is going to happen with this giant pain in the ass called Multiple Sclerosis.

When I was diagnosed boards was a great source of information and the personal experiences of others truly helped so I was wondering if anyone was willing to share some of their experiences with it in this thread for those who are in the same position we were all once in? The good, the bad, the downright ugly!!!

For all my fellow MS'ers out there and family's of those with MS if you feel at all comfortable please post how good, how bad, what you can/ can't do, if you want a rant or moan, we all need to vent

Find more posts tagged with

humour

illness

blog writing

living with ms

gilynea

Quick Links

Comments

https://www.boards.ie/discussion/comment/120920837#Comment_120920837

Sorry I can’t help . It was my GP who first mentioned MS . My wife at the time had private insurance in her job so i was private until I was diagnosed . It seemed to be the Lumbar puncture that clinched my diagnosis. That was in SVU .

https://www.boards.ie/discussion/comment/120920837#Comment_120920837

I can only tell you about SVUH. Had decades of on and off numbness in limbs, completely ignored by doctors as I had other stuff going on, so it’s go to a pretty advanced and obvious stage now. I was let down by the private “system”, I pressed my GP for a referral to SVUH as I live in Milltown, 10 days after referral letter sent in by registered post I got an appointment letter direct for the MS Clinic for 7 weeks later. It had been marked “urgent”. I’ve heard in general of neurology appointments typically taking 6 to 14 months, and can be as bad or worse in private, although Prof Hardiman had offered me an appointment exact same date as SVUH!

I sent an email to Blackrock questioning why I didn’t get contrast when Prof Tubridy had very specifically requested it. They responded in some detail, and explain they consider it unnecessary and potentially toxic, and that they don’t care who requests it, they won’t do it, however they will repeat if he comes back to them insisting on it.

Nigel Fairservice

I get dye all the time in Cork University Hospital. Never heard it could be considered potentially toxic.

https://www.boards.ie/discussion/comment/120930068#Comment_120930068

They said in a long email from the clinical MRI specialist that it builds up in body and causes long term damage… I’ll get a screenshot of the conclusion paragraph…

Nigel Fairservice

I suppose there's risks with all drugs. I imagine if it was totally unsafe they just wouldn't use it at all.

https://www.boards.ie/discussion/comment/120930176#Comment_120930176

I know my doc is going to request it be repeated with the contrast, at least this one time of not so much down the road. I think it might be riskier for people to undergo gadolinium injection for years on end. I’m 62 and this will be my first and maybe only injection with it as protocol to commence me on treatment.

https://www.drugwatch.com/gadolinium/side-effects/

I have less than perfect kidney function, it’s ok, but maybe they see that the contrast is better avoided in my case if possible.

Got an email from Blackrock today in response to my reply about why they hardly ever do MRI with contrast “as per Beaumont protocol”. I had explained that this would be a first ever gadolinium injection toon to highlight active areas as per protocol before starting Ocrevus, if disease is accumulated rather than active I don’t qualify for treatment. They had thought I had been through half a lifetime of MRIs with contrast, also they had believed that a Blackrock doctor had made the referral, when that doctor declined to follow me up. They said a radiologist has looked at Sunday’s MRI and the lesions look the same as a previous one I had in-patient 3 months ago.

However, they said after my explanation they have taken note that it might be appropriate to do a gadolinium enhanced scan as a once off, so I’m to come in tomorrow afternoon when they will do it.

byhookorbycrook

Crikey, recode, you've been through the mill.

https://www.boards.ie/discussion/comment/120935506#Comment_120935506

Prof Tubs shook his head in almost disbelief, and said “right we have to get right on with doing something about it all now”. I’ve heard far worse stuff happening other people, usually in relation to delayed cancer diagnoses.

https://www.independent.ie/irish-news/the-heartbeat-of-our-family-is-gone-mother-of-girl-17-who-died-from-brain-tumour-urges-parents-to-be-their-childs-advocate/a1396762816.html

As happens that poor girl had a brain tumour of a type that doesn’t really respond to treatment, but it took a trip to Dubrovnik to happen to find out her diagnosis. She was falling over, and her worsening symptoms ignored by doctors in Ireland.

https://hsc.unm.edu/news/2022/02/doctor-researches-toxic-side-effects-rare-earth-metals-mri.html#:~:text=Reports%20first%20started%20emerging%20about,well%20as%20internal%20organ%20damage.

This explains the dangers of gadolinium contrast agent, shouldn’t be used routinely.

Well if it rains it pours. Just about to go into Blackrock for contrast, SVUH doctor from neurology team phoned me just now, thought it was a hoax at first. They got a very worrying report from my scan… but surprisingly to do with my uterus, and I’m being urgently referred to gynaecology. Hyperplasia of endometrium, there’s only one safe treatment for that as cancer is often buried within, so it’s very likely going to be more surgery in the form of hysterectomy.

Wishing to attend the MS Conference in September in Athlone on Sat 16th September, I phone the Radisson quoting MS Ireland booking rates. Alas the only 6 accessible rooms were not available to me and I was told by the very sympathetic nice girl on reception that sadly nothing at all was available for my stay. She had said MS Ireland booked the rooms for Thursday and Friday but strangely not Saturday, when the seminars and gala dinner would take place.

All the rooms are bath only, no walk-in shower, except for those 6. We are a strange country where many of our hotels are focussed on baths only. It’s been sone time since I’ve been able to safely get out of a bath, and there’s no possibility of that now, though I’m only 62. There’s plenty of people, young and old, can’t easily use baths. Actually if you use a simple B&B you are more likely to have a shower and at most a short doable stairs or maybe on ground level.

Anyway I got back online and managed to book a room with inaccessible bath for the two nights at a costly price, but at least I get to attend. I will bring flannels to wash myself.

The lack of accessibility in major modern hotels drives me mad. I formerly brought my late elderly mother, a wheelchair user, all over Europe, New York etc, never had a problem with accessibility. That was back to 2009 when she died after a short illness aged 89, her last foreign trip to Switzerland where an old city building had been converted to be fully accessible.

Has anybody been affected by autonomic disorder, especially the regulation of blood pressure?

I’m plagued by it, and if I stand still, as in a queue, for more than a couple of minutes I have a tendency to get presyncope, and and I have passed out and fallen down on the floor several times. My GP tested me for orthostatic hypotension and said I’ve a marked tendency to it.

Feeling especially exhausted these times, went to check my own BP there a few minutes ago, 144/90 sitting, and dropped quickly to 119/89 when I stood up. That’s a 25 systolic fall, no surprise I start to grey out almost every time I stand up. I find it about the most generally disabling of all symptoms.

Also my fasting blood glucose has been shown by paramedics attending me once to be 2 mmol/L which is quite hypo.

Has anybody found any way to cope with the BP especially, at least eating regularly can deal with blood glucose levels?

Got follow up appt at SVUH MS Clinic for 29th November, have to have the endometrial hyperplasia fully investigated & treated ahead of that. It’s put a spanner in the works as they cannot give any form of immune suppression without eliminating as far as possible the question mark over potential underlying malignancy, even a low grade smouldering carcinoma could turn into invasive cancer if immune system is suppressed.

https://www.boards.ie/discussion/comment/120954325#Comment_120954325

I can't imagine what you've been going through. I hope fervently that everything that happens medically in future is positive and that you have someone to push for your latest issue to be dealt with sooner

I’m living on my own, very much a one-person operation, although very sympathetic cousins & friends. Yesterday I was greying out all the time, BP plummeting by 55 systolic immediately upon standing up, and my GP can only advise me to rise slowly, but that doesn’t help as it pretty much always goes to grey out on a minute or two anyway. Last night I was getting chest pain in addition, just a vague pressure in chest now.

Hate presenting to ED, you need to be at the top of your form to cope with that 🤣🤣 Years ago I’d be given a trolley when the gut issues arose, now anyone under 80, now matter in what pain, gets turfed off ambulance trolley to a hard chair to wait 8 hours. The trolleys are all occupied by people in the 90s at the end of their lives, that’s the reality of us all living longer and not having enough facilities to cope.

Acute heart injury ruled out as per blood troponin, so got to go home. Doctor there said my GP has got to get my high supine BP under control, it’s peaking in the 180s, as it’s showing early damage on kidney function, and will lead to early heart failure & stroke if not controlled. To get echocardiogram to check any muscular changes that might be related to the enormous variance in BP from supine to standing & advice from my cardiologist. Recommended to get every vaccine going as I may be at top risk category.

Also told never to stand in a queue to prevent fainting episodes. I got a small long-range mobility scooter delivered today.

Hi,

I've been referred to neurology for investigation for suspected MS, 1 of my aunts has it in a benign form and with my symptoms my gp wants me to be checked out.

Can someone explain to me what the process is for these sort of investigations please.

https://www.boards.ie/discussion/comment/120966307#Comment_120966307

MRI of brain and spine, these take about an hour of lying still in a capsule and don’t use any form of radiation. A spinal tap is very often done to check for oligoclonal bands in the CSF fluid drained off. Most people with MS have this finding and it greatly supports diagnosis. I found that otherwise very safe test uncomfortable when a tiny nerve branch was touched, giving rise to sharp nerve pain down leg. Locally it doesn’t really hurt spinal area, as local anaesthetic is introduced. Sedation can be used. Some people have little or no bother with test.

There is no one definitive test, yet, for MS. You can have some normal looking results and have the disease. Or the positive looking results may be due to another condition. Along with reporting of symptoms, testing of reflexes and neurological signs, the neurologist can start to form a diagnosis.

But be warned, it often takes months, can be a very frustrating process where you don’t know where you stand, and repeat scans for a neurologist to come to a conclusion strong enough to start treatment, and as it’s immune suppressive you must be deemed healthy enough to endure it. It’s calculating risk versus benefit.

Before a doctor does this evaluation they want to rule out well-known causes of neuropathy with very similar symptoms & signs, eg low Vitamin B12, diabetes, thyroid disease and a lot more. HIV testing is always part of this too, will be covered in the panel of bloods. MS itself does not show up on any current blood tests, it’s just to eliminate causes that have a different management approach and for which immune suppression could be most inappropriate.

https://www.boards.ie/discussion/comment/120968077#Comment_120968077

Thanks for this outline, have a better idea what to expect. For myself i have type 2 diabetes (medication controlled) and have had b12 issues which i get injections from gp for. I have been having random hand and foot tremors along with memory issues combined with family history which is why i have been referred. There was talk about possibility of parkinsons but was leaning more towards MS due to my aunts diagnosis.

Has anyone had this symptom, I believe quite common. Getting strong sudden urges to pass urine, wakes me up throughout the night, only to pass very little urine to gain relief for maybe an hour. Having constant dreams of having to pre and having to fund places to do so.

Plans to start treatment in November have kind of been scuppered. Later this month I have to get biopsied for potential cervical cancer as MRI & the HPV tests combined through up suspicions. Easy enough to treat early cancer with a hysterectomy as it is a slow grower and takes its time to be invasive. But on a visit to ED when I was very dizzy and had chest pressure/pain, the doctor ruled out acute heart issue via no raised troponin, but he did remark at the extreme variation in BP, and not so great kidney function, and told me to go back to my GP and ask him to order an echocardiogram with follow up by a cardiologist, as only that way could a chronic heart issue be thrown up. He agreed that Dysautonomia is part of it, but suspected there might also be an issue with my heart itself playing a role.

The Gynae team asked for a copy of the echo report, and of course I need it for the MS Clinic later, so I asked the Beacon to send me & my GP copies of the report sooner than I get to see the cardiologist. Have had normal echos before, done for a different reason, but when I opened the envelope my heart sank at the list of defects which would account somewhat for my tendency to black out. Valve stuff can be fixed satisfactorily if not too much remodelling with scar tissue has taken place. Seems I might have had rheumatic fever or an immune process doing a little bit of damage. Have posted copies of the report, but I’m afraid they will baulk at giving me Ocrevus as your heart needs to be in decent shape for that. So many obstacles, one after the next.

Really enjoyed the MS Conference in Athlone, seminars very very insightful.

Had to cancel going on a short holiday break due to another autonomic vagus nerve issue. Developed severe gastroparesis with some ileus over past few days, bile building up in throat and causing havoc, inducing a respiratory asthmatic reaction too. Have had a couple of episodes in the past, but autonomic issues are difficult to deal deal.

https://www.boards.ie/discussion/comment/121061613#Comment_121061613

Yes . Not at night but during the day when I need to go I need to go quickly . Ever since I started to sit down for pees it has eased

https://www.boards.ie/discussion/comment/121147739#Comment_121147739

Well I’m a woman as per photo, always sit down (but stand up to empty ileostomy bag), but I learned yesterday after undergoing attempted hysteroscopy, that my uterus is tethered by adhesions to my bladder, might have a lot to do with it. SVUH Day Surgery gives the most amazing care.

I can't ‘drain the lizard’ standing up . The only way to do it is sitting .

https://www.boards.ie/discussion/comment/121148461#Comment_121148461

I believe that’s not at all uncommon even in guys without MS etc. They had a demo table in the Radisson Athlone at the MS Conference last weekend as to how bladder can be drained when it doesn’t happen by volition. Easier in the ladies of course. Some of the gals wanted this for sheer convenience at concerts to avoid fitting on unhygienic toilets ! 🤣

Underwent a hysteroscopy last Friday 22nd Sep, to inspect for potential cancer, but they were unable to complete procedure as they found uterus tethered forward in top of bladder from several previous surgeries/infections.

Next day at home began to experience severe & sudden left lower pain, together with shaking rigors and temp over 40C

Discharged now on antibiotics but warned about probable recurrences, it that surgery would be technically extreme difficult due to previous multiple surgeries.

As long as I have an underlying uterus which could harbour infection, the more I cannot undergo immune suppressive treatment. All hinges on major gynae de idioms now.