MS in all its glory

cj maxx

https://www.boards.ie/discussion/comment/121568000#Comment_121568000

Once I had all the tests , lumbar puncture and MRI’s the Neurologist was confident of a MS diagnosis. I can trace symptoms back to childhood , and even though he disregarded me my lesion is an old one. I remember being in hospital when I was 2/3 and taken by ambulance to Dublin ( my 1st relapse ) .

But those medical records have long since been binned

https://www.boards.ie/discussion/comment/121568063#Comment_121568063

I’ve had some neuro stuff going on since hood, I was born with strabismus, and was always falling to one side. Numb right foot on and off since at least my 20s, left hand doing its own thing around same time, always episodes of dodgy balance, single eye pain, blurred vision. But I had very troublesome ulcerative colitis which took centre stage, and for which I received Humira which is actually toxic to people with MS. I had major surgery to remove my colon & ileostomy. Started putting muscle cramps etc etc to electrolyte imbalances which are common enough with ileostomy but blood tests proved these were not underlying my neuro symptoms.

When I had that bad fall that knocked me out senseless last March I underwent MRIs in Blackrock after attending ED next day after spending night on my living room floor & unable to move for hours, but I was under the care of a general medicine consultant who had some kind of run-in with a neurologist he called from another private hospital. She had marked down “Query - MS, CIDP, Vasculitis? Needs follow up in 3 months”. She accused the general medicine consultant of lack of cooperation and pulled out of my care, then the general consultant wiped his hands of me too and has since refused to even communicate with Prof Tubridy whom I now attend in SVUH. He ordered more scans and all sorts of tests, all pointing to MS, but he says it looks like I have a progressive form which might not respond satisfactorily to treatment, which cannot in any case be given whilst I have cervical HPV. The syrinx is being monitored too, likely formed after a spinal lesion caused a necrotic area, now filled by fluid.

The home test kit for HOV arrived today, so will do the test next week, has to be left in at a post office in prepaid envelope on a weekday, except Friday, for processing as quickly as possible.

Gremlinertia

Question for you Recode, are you in a position to buy/subscribe to a medical alert device?. It's a frightening thing to consider but possibly more frightening not to have in the event?

I'm very aware of myself in that, but my situation isn't an iota on yours. Sorry if that's invasive or rude, hoping that it's a flare that will subside.

cj maxx

https://www.boards.ie/discussion/comment/121568218#Comment_121568218

God you’ve been through the wars. Im feeling slightly relieved I ‘only’ have MS

https://www.boards.ie/discussion/comment/121568659#Comment_121568659

well, having had the colectomy/ileostomy I no longer have the colitis, that’s a real positive 😁

It’s actually not unusual for MS & inflammatory bowel disease to be co-morbidities. They have common factors including altered microbiome, indeed one gut bacteria apparently drives the breakdown of the blood-brain barrier.

My mother was given the now banned drug DES during her pregnancy with me. Her first born, a big healthy boy, died of Asian Influenza during a pandemic. She subsequently had a series of miscarriages, and was given the drug in an attempt to help her retain the pregnancy as she was an older mother and running out of time to have any children. Unfortunately that drug resulted in serious defects in the children born to these women, especially girls, from cancers, to autoimmune diseases like IBD & MS as well as ADHD, and some of these defects were perpetuated to further generations. It was banned elsewhere, but little old Ireland was slow to withdraw toxic drugs, including DES and Thalidomide.

https://www.boards.ie/discussion/comment/121568356#Comment_121568356

Not at all, I always welcome questions, suggestions etc, knowledge is power as the Mayan Mexicans say.

After my bad fall last March which rendered me unconscious in a pool of blood on my living room floor, and unable to move for hours after I came around, I got an Apple Watch which has fall detection and an alert system. Indeed I spoke about it at an MS conference, and sone other people took note to buy one. No subscription required. It will alert two named people plus emergency service. My next door neighbour has an emergency key, as well as a relative living two kilometres away. They all have each other’s contact numbers etc, so I have a network in case I did take a tumble.

The alerts that Recode has fallen go out to my contacts, they then phone me and ask am I ok, if I do t respond they contact emergency services, the people with keys etc who can then gain access. Modern tech is really great for anyone with any kind of disability, even anyone simply living alone as anyone can fall.

I feed a surgeon I attended earlier this year told me he bought an Apple watch for his elderly mother, as she was living alone, but was trialling it himself so as he could explain it to her. He went to a party wearing the watch, had too many pints, got on a skateboard, fell off it, and lo and behold an ambulance got summonsed but all he really hurt was his pride!

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)_/¯