MS in all its glory

GTE

Hi all, I can't seem to find the search forum feature on the new Boards. I was wondering if anyone had any stories about obtaining mortgage protection insurance while having MS. It's a worry for us as my partner has MS, but very very mild. Diagnosed 5 years ago and no relapse or symptoms since, other than some tiredness.

We know of the specialist mortgage protection providers but it will be a long weekend until we find out from them as we are worried this will screw up our mortgage.

adam88

https://www.boards.ie/discussion/comment/117656569#Comment_117656569

Hi, it’s a bit difficult getting it but it can be got from the specialist providers. Worse case scenario most banks will allow the mortgage be drawn down once tou get two refusals. It’s just a danger if something should happen the other side isn’t protected financially

bookworms

Just another question on mortgage insurance. My husband and I have a mortgage, and the life insurance with the last 10 years. I have been diagnosed recently. Should I notify the insurers?

adam88

https://www.boards.ie/discussion/comment/117663410#Comment_117663410

Doesn’t matter. That’s the risk they took when giving ye the policy. You’ll need to advise car insurance company tho

bookworms

Thanks Adam, car insurance and driving license amended. Wasn't sure about mortgage protection. Appreciate your help

whatever76

Hey - whats the best process for going to see Physical therapist that would have experience with MS patients ? Just noticing some stiffness when walking esp in Mornings so just want to seek advice on it and some exercises . GP referral or can you arrange one privately ? If privately any recommendations of a PT in Cork area with MS patient experience ?

adam88

https://www.boards.ie/discussion/comment/117742511#Comment_117742511

I’m interested in any response to this question

cj maxx

Try MS Ireland to see if they can refer you. I think it was they who referred me to a PT

whatever76

Selma Blair says she is 'in remission' from MS (rte.ie)

byhookorbycrook

https://www.boards.ie/discussion/comment/117765719#Comment_117765719

I know two people who have had it. Some of the groups on FB are quite aggressive if you ask about long term prognosis and those who it fails. Like Lemtrada, I think it's more successful the earlier you have it .

whatever76

https://www.boards.ie/discussion/comment/117767919#Comment_117767919

Wow that's Interesting , and how are the people doing ? I am not sure I be brave enough to go through the treatment

cj maxx

I looked into it 5/6 years ago but wasn't in a position to try it. I didn't have the 60K or time. Russia and Mexico were the the two main places I see clinics for it.

byhookorbycrook

https://www.boards.ie/discussion/comment/117769379#Comment_117769379

One is doing well, but she was very quick to get it after diagnosis. Another was quite " advanced" MS wise and didn't feel they had any option than to try it. Both paid for under the Patient Treatment Fund and got it in England.

MyAccount

https://www.boards.ie/discussion/comment/117742511#Comment_117742511

Hi,

Pre-Covid I used to attend a Neuro-PT in Dublin. (Not too far (maybe an hour) from home). They were recommended by my Neurologist. The PT didn't need anything but did seek a report from the Neurologist. I found them good. It's hard work but there was a noticeable improvement in my symptoms. Not cheap though. (Also was "homework"). I stopped going last year / during lockdown and for personal reasons (I lost my younger brother last year) so I was too scared to go back. With all that went on I also got lazy and stopped doing the "homework" Stupidly in hindsight.

Unfortunately I have had a number of definite / more pronounced issues in recent times so after a bit of pushing the neuro agreed to a face to face consultation yesterday (yet another bill!) on foot of which he's bringing me in to hospital next week "to investigate further". Also changing meds to Gilenya from next week.

cj maxx

https://www.boards.ie/discussion/comment/117772938#Comment_117772938

How does the Payment Treatment Fund work ?. I'm in NI so will there be a chance of getting it done on the NHS? Even though I think if I had it 5/6 years ago it would be worth it as mobility has gone down hill in that time. :(

byhookorbycrook

https://www.boards.ie/discussion/comment/117789299#Comment_117789299

You should probably join the FB group as it’s mainly geared to the Uk.

Search UK HSCT , it’s a private group.

cj maxx

https://www.boards.ie/discussion/comment/117790913#Comment_117790913

I'm in it ,I think,

stevie84

Hey, I've been lurking for awhile. First post so be gentle 😊 I was officially diagnosed with RRMS in 2017, I had symptoms from September 2016. I went through hell at the time and I've struggled with a lot of anxiety since. I had MS symptoms for about 10 years before being diagnosed and experienced fatigue and unusual symptoms since I was a child. I've had a lot of gaslightling from the medical profession over the years and have by and large found GPs are not very knowledgeable or empathetic about MS.

Up to March 2019 I was working full-time in Public Service job in a large office. While trying to hold down a full-time job there were a lot of times I felt really unwell, fatigue, chronic migraine, pain and severe anxiety. I constantly pushed through at my own detriment. Since March 2019 I have worked remotely at home, I am busier than ever and working long hours but working from home has given me the opportunity to manage pain, other symptoms and my anxiety better. I don't feel I have to be "on" all the time and can just cope better at home with how I feel. I also save energy not commuting, being around people all day and being out of my environment.

I was wondering how others with MS manage with work and their employer. Especially those who have been working remotely during the pandemic and are only be called back to the office from next week. I understand there are people who have been working all through the pandemic, which I have huge respect for but for those who had the opportunity to work remotely how are you navigating the return to the office and have you requested to stay working at home? I would like to keep working remotely full-time but I am really not sure how to push for this and feel I will have to look for another job if I want to stay working from home 😔

I am also very anxious about returning to the office, I am vaccinated but being honest I am still worried about getting the virus and having any additional health complications on top of MS.

I was glad to see MS Ireland published something about this last week https://www.ms-society.ie/understanding-ms-work as my employer is not being very empathetic and doesn't really have an understanding of MS I feel. I feel very isolated and alone in everything MS related. Is anyone else dealing with similar issues?

cj maxx

https://www.boards.ie/discussion/comment/117909733#Comment_117909733

I can't help you re employers, but I can completely relate to having symptoms at a young age. If no-one here has advice I'd recommend seeing a specialist employment solicitor, just to cross your t's and dot your i's regarding work.

Nigel Fairservice

https://www.boards.ie/discussion/comment/117909733#Comment_117909733

I have popped in and out of the office when needed over the last year and a half but I'm heading back into the office next week for a day before gradually increasing days. I don't think everyone will be in at the same time for now and social distancing will still be in place so hopefully Covid will not be a problem... hopefully. Having said that I would like to continue working from home because as you said I feel I'm better able to manage my MS, especially the smaller things. For example, in the office I could visit the toilet 10 times before lunch and it was something I was self conscious of. At home I didn't care. If I needed to go then I just went. My fatigue was a lot better as well and I could do more to help myself in the heat with fans going and windows open. I didn't have to worry that I would be annoying my colleagues with these things.

My employer is good for time off for appointments and scans and all that but I'm not really sure they have much understanding of the illness, range of symptoms and how the illness presents differently in different people. Right now I think it's a bit early to predict how things will go with the return to the office and will adopt a wait and see approach for now.

cj maxx

Anyone here on lemtrada or Ocrevus ? Any advice about it or pros and cons ?

stevie84

https://www.boards.ie/discussion/comment/117910863#Comment_117910863

Yes, being finally diagnosed can explain a lot of what's gone before. Thanks so much for the advice.

stevie84

https://www.boards.ie/discussion/comment/117911127#Comment_117911127

Thanks so much for your reply. Yes, I have been in the lucky position to be fully working at home for the last 18 months and I'm the same as yourself it's helped me manage better on all fronts.

Our office is returning on a phased basis too but the guidelines and procedures are a little sketchy even though it's a Government building! I guess not knowing who is vaccinated, if people really will stay out of the office if they're sick and the fact social distancing and mask wearing in certain places will not be a requirement from October I am pretty concerned especially going into flu season.

I think I would just rather wait and see while working from home 😊

byhookorbycrook

https://www.boards.ie/discussion/comment/117911129#Comment_117911129

I'm not sure if Lemtrada is being given at the moment. It was pulled for a while. I know 2 people on Ocre and they seem to tolerate it well.

Stevie, welcome to the gang, though obviously no-one wants to be a part of it.What treatment are you on?I'm on Tysabri , which makes me more prone to infection which isn't ideal when you are a primary teacher working with unmasked children with additional needs some of whose cough etiquette, hand hygiene and social distancing is poor, at best. (That's not down to the additional needs, 6 year olds aren't generally models of hygiene!)

I bought a HEPA filter for my classroom (from my own funds) and wear a KN95 mask at all times. Our staff room has no more than 7 people there at a time, we have allocated places and use our own cutlery, coffee etc. We wipe anything we touch and with staggered breaks etc. the longest anyone is in there is 20 minutes tops. We wear masks moving around in the room and only remove them to eat or drink.

The staff are aware of my diagnosis . I fell in the corridor last week and got badly bruised- staff know that I ask for help if I need it , but pride literally came before a fall. On the plus side, I ended up with some rather impressive bruises, which really impressed the small people. Bruises are even better than blood in the eyes of a senior infant. Talk to your boss, Stevie, outline what you feel you need and see how it goes. MS Ireland will be very helpful with advice on how you can advocate. The very best of luck.

adam88

https://www.boards.ie/discussion/comment/117909733#Comment_117909733

Hey, public sector worker here. Working nights and shifts and everything else with my MS. In able to at the mo but that’s another story.

get onto occ health straight away. Tell them tou are finding wfh very beneficial and that you want to stay in that arrangement. They should be able to help you

GreenRdBoy

Hi Cj Maxx.

My son, 22, was on lemtrada and had no issues with it. Had 2 infusions (both were hospital stays) but we were told they are not using due to some potential kidney issues. On ocrevus now and doing well again. Have infusions every 6 months and in for about 5 hours. Early days for him but him feels good and last mri showed no new lesions. Sorry if it seems vague but no real stories to tell.....thank god. Best of luck to you

cj maxx

https://www.boards.ie/discussion/comment/117917772#Comment_117917772

Thanks for the replies. I'm not sure I meet the criteria, no new lesions on my last MRI's. ( good ).

My nurse called back to say bring it up with my neurologist, but I haven't seen him in years ( can't remember the last time I saw him)

Anyway I seem to tolerate Avonex well enough.

siriusone

Hi all, new joiner here. I was diagnosed with RRMS on Friday last.

Just over a year ago I noticed a lack of coordination/weakness in right leg and some lack of dexterity in right hand. Went for MRI but all clear, had lumbar puncture which showed something but nothing conclusive, then a VEP test which was again a bit iffy but not conclusive. 12mth MRI however shows multiple/several lesions in spine/brain. I don't have a number exactly but neuro says it is aggressive. Despite the lesions my symptoms IMO haven't changed, or maybe they have but I've not noticed due to slow onset. No relapse/flare-up yet.

Because of the aggressive nature, I'm being pushed to select a drug. I can't opt for Tysabri because my JCV titer is 3+ (causing the neuro to laugh out loud). I kinda expected all along that I might have MS, but being told I had no chance of going on Ty felt like a bigger kick in the guts.

But anyway, it's down to Ocrevus or Gilenya. I'm poring over any studies I can find at the moment but would be interested to hear ppls real opinions. I have done the searches of the forum but only being diagnosed last friday and being in hospital for a dose of steroids for last number of days means little time to research. It's almost a flip of a coin right now between the two but I was edging towards Ocrevus...nothing scientific except that on a list from the neuro it was 3rd from top (Ty being top) and Gilenya was 5th. It's almost a case of picking the drug who's side effects you can better accept because the efficacy difference of the drugs is not yet obvious to me.

Appreciate any experiences, good or bad. End of the day the decision is mine to make. I don't want anyone to break forum rules by offering me medical advice etc. but opinions are good. Thanks folks.

stevie84

https://www.boards.ie/discussion/comment/117931156#Comment_117931156

Hey, sorry to hear you got an MS diagnosis. It can be a lonely and difficult time in the early days. It's taken me a long time, but it does really help talking to others in the same boat. I was very resistant of that at the start. I had optic neuritis in October 2016 (I had other random unexplained symptoms for years before that). Sent for an MRI in November 16 and was told when I went to the Eye and Ear for the results it was more than likely MS but further tests were needed. Conclusive lumbar puncture and another MRI in Feb 2017 and was finally told in May 2017 in Vincent's that I had RRMS. Between my scan in Nov 16 and Feb 17 I had 5 new lesions. I was give 3 pamphlets about medications too and told to choose. I chose Gilenya as it was one pill a day and I thought the easiest option for me. I started Gilenya in August 2017. I had to go into the clinic for the day as they monitor your heart the first time you take it. I was fine and all stayed normal.

I took Gilenya for 3 years up to October 2020 and only came off it as we are trying for a baby. Gilenya worked well for me and my MRIs were stable during the 3 years. I also have chronic migraine and during that time they did worsen. Consultant said the Gilenya may have exacerbated it but I am still off it and get migraine but not as regularly so who knows.

When I stopped Gilenya I was given steroid infusions as you can have a rebound when coming off it. Personally, I had more issues with the steroids than Gilenya. I was told if I had a relapse or changes on an MRI they would give me Tysabari. However, I also tested positive for JCV. Consultant said I could take it for a very short time (while trying to conceive) and the risk would be smaller as I think the longer you are on it (especially if you are positive for JCV) the greater the risk. I don't really want to take Tysabari at all and hoping I can avoid that. Gilenya does also have a risk of PML but a lower risk I think. All in all Gilenya worked for me and I would go back on it again if I have to.

I suppose the thing to keep in mind is that you can possibly try something else if a medication doesn't suit you. It's best to go with your gut feeling at the moment about what's best for you. Best of luck with your decision.

*(On a side-note not sure if anyone has ever been to the Eye and Ear but in a consultation room near the Waiting Room there's this weird wooden chair/bench in the wall thing that I sat in when I was given my diagnosis. Its up there as one of my surrealist experiences ever. It's weird what sticks in your mind at times like that!)

Carrie6OD

I’ve been on ocrelizumab for 2 years now. PPMS. MRI has remained the same since diagnosis so possibly ocrelizumab is responsible for that. But mobility has decreased in the last 2 years. But possibly due to lockdown… ask away if there’s anything specific you’d like to know