MS in all its glory

byhookorbycrook · 11-01-2016 9:28pm

Pharmacy refused to take them, I used to have to go to local HSE offices, sign several forms, get a key for a bin, then put the closed sharps contained in, relock the bin, hand back the key, then sign more forms.

kilco · 11-01-2016 10:29pm

ms nurse told me to take them to the public health nurse, which I did, no hassle and she gave me an empty one instead

Salmotrutta · 14-01-2016 7:39pm

I've been invited to a seminar for Gilenya patients at the end of the month (organised/sponsored by Novartis)... a talk about mindfulness, one about brain health, and ask the expert session (Michael Hennessy, who happens to be my neurologist). Anyone ever been to one of these? Are they worth going to? Might go along anyway, I've actually never met another MSer yet since diagnosis (only a year and a half)...

byhookorbycrook · 14-01-2016 7:45pm

A lady I knew who was diagnosed ahead of me rang me when she heard my news. She said she avoided MS society meetings/ gatherings and things like the above. Her take on it was that many people who were diagnosed a long time ago had no DMDs and so many of then are quite severely disabled tended to be at all of these events. She felt that seeing this would make her afraid of the future and what it might bring and that we should take each day as it comes.

That said, another lady I know is VERY involved with all kinds of MS events and thrives on it!

Lollipops23 · 15-01-2016 8:12am

Salmotrutta wrote: »

I've been invited to a seminar for Gilenya patients at the end of the month (organised/sponsored by Novartis)... a talk about mindfulness, one about brain health, and ask the expert session (Michael Hennessy, who happens to be my neurologist). Anyone ever been to one of these? Are they worth going to? Might go along anyway, I've actually never met another MSer yet since diagnosis (only a year and a half)...

Can I ask where you got the invite from?

I'm only diagnosed a few months, but am on Gilenya and it's going grand so far.

Salmotrutta · 15-01-2016 9:51am

Lollipops23 wrote: »

Can I ask where you got the invite from?

I'm only diagnosed a few months, but am on Gilenya and it's going grand so far.

It came in a Novartis envelope. It's a Galway event so might be just local people on Gilenya invited, they may be having other events around the country? I'm sure if you wanted to go your Gilenya nurse could arrange an invite.
Glad to hear it's going well, same here, no relapses since starting it and no side effects.

Lollipops23 · 15-01-2016 10:05am

Salmotrutta wrote: »

It came in a Novartis envelope. It's a Galway event so might be just local people on Gilenya invited, they may be having other events around the country?

I'm in Dublin, so maybe it's just at a different time in the year here!

Yeah no side effects as of yet, but I'm only 2 months on it.

I'm curious as to anyone else's experience- the relapse that got me diagnosed was numbness in my fingers on one hand. I haven't had many more symptoms (although this symptom has gotten worse) but it's been about 8 months now and I'm starting to think the sensation will probably never return. Anyone here never come back out of this kind of relapse?

Obvs, I would expect my legs to have longer term issues in the future, but it's scary to think I may have to live the rest of my days with grip issues and numbness on my hand.

Salmotrutta · 15-01-2016 10:52am

Lollipops23 wrote: »

I'm in Dublin, so maybe it's just at a different time in the year here!

Yeah no side effects as of yet, but I'm only 2 months on it.

I'm curious as to anyone else's experience- the relapse that got me diagnosed was numbness in my fingers on one hand. I haven't had many more symptoms (although this symptom has gotten worse) but it's been about 8 months now and I'm starting to think the sensation will probably never return. Anyone here never come back out of this kind of relapse?

Obvs, I would expect my legs to have longer term issues in the future, but it's scary to think I may have to live the rest of my days with grip issues and numbness on my hand.

PM sent

ash23 · 15-01-2016 2:31pm

Lollipops23 wrote: »

I'm curious as to anyone else's experience- the relapse that got me diagnosed was numbness in my fingers on one hand. I haven't had many more symptoms (although this symptom has gotten worse) but it's been about 8 months now and I'm starting to think the sensation will probably never return. Anyone here never come back out of this kind of relapse?

Obvs, I would expect my legs to have longer term issues in the future, but it's scary to think I may have to live the rest of my days with grip issues and numbness on my hand.

I was diagnosed three years ago and still have some numbness and tingling in my leg and arm. It improved a fair bit in the first year and then slightly more in year 2. I don't really notice it now because I'm so used to it.

But it's improved in year 3 aswell as my balance etc is also better and I don't notice the improvement until I go to do something specific like stand on one leg or run etc and then I'll realise that it's improved a lot.

When I'm tired or sick it tends to feel worse and I also cannot tolerate anyone touching the inside part of my arm, especially around my wrist as it's hyper sensitive.
My boyfriend will occasionally absentmindedly start rub my inner wrist with his thumb when we're holding hands and it feels horrible to me and I have to tell him to stop.

So you can probably expect more improvement but it's not assured that it will go away completely.

Lollipops23 · 15-01-2016 3:45pm

ash23 wrote: »

So you can probably expect more improvement but it's not assured that it will go away completely.

Thanks, I'm glad to hear I don't have to rule it out entirely! Fingers crossed (with great difficulty....)!

miseagustusa · 18-01-2016 3:16am

Hi all, I was diagnosed with MS in September after Optic Neuritis in June. I'm due to start Gilenia soon!!! .. does anyone know if Gilenia helps fatigue?? Or are there any other meds for this??? .....

Lollipops23 · 18-01-2016 8:09am

miseagustusa wrote: »

Hi all, I was diagnosed with MS in September after Optic Neuritis in June. I'm due to start Gilenia soon!!! .. does anyone know if Gilenia helps fatigue?? Or are there any other meds for this??? .....

I've been lucky enough that fatigue hasn't been a major one for me; I started Gilenya just over 2 months ago. It's not really designed to alleviate the symptoms, rather to help prevent further ones.

I was told to take Vit D supplements (there's some evidence it helps repair damage), and this may help with the fatigue. Try to eat healthily too.

Lollipops23 · 18-01-2016 11:38am

http://www.bbc.com/news/health-35065905

This is on tonight on BBC. Interesting treatment ideas, although seems fairly intense.

Salmotrutta · 18-01-2016 11:45am

miseagustusa wrote: »

Hi all, I was diagnosed with MS in September after Optic Neuritis in June. I'm due to start Gilenia soon!!! .. does anyone know if Gilenia helps fatigue?? Or are there any other meds for this??? .....

Have you got bad fatigue? That's unusual so soon after a first episode I think. If you read work by George Jelinek he's a big advocate of exercise and diet to control the condition. The vegan low-fat diet is not for me, but I do believe that eating healthy, as in lots of fresh fruit and veg and as few processed foods as possible, including lots of healthy unsaturated fats, can boost energy levels. Also trying to keep as fit as possible helps with energy levels - I know not everyone can run or lift weights, etc., but being as strong and fit as you can be while you can work out will only help long-term if/when new symptoms limit your ability to exercise.

Like Lollipops I don't have fatigue thankfully. I've been on Gilenya about 17 months now, it's a disease-modifying drug meaning it treats the underlying cause, it doesn't treat symptoms like fatigue, but it may improve symptoms by reducing disease activity. If the symptom is caused by already existing nerve damage that's less likely. I have hand numbness that is long-term, the Gilenya has not improved the symptom, but I haven't had any relapses since being on it.

Lollipops23 · 18-01-2016 1:42pm

Salmotrutta wrote: »

I have hand numbness that is long-term, the Gilenya has not improved the symptom, but I haven't had any relapses since being on it.

Snap! (although my handwriting has inexplicably returned in recent days!)

miseagustusa · 19-01-2016 2:27am

Hi all, thanks for replies!!! Do you know if provigil is available in Ireland??? Or Adderall??? Was talking to a friend in America who takes these and said they are brilliant for fatigue, she said she feels 'normal' most of the day after taken them!!!

ash23 · 24-01-2016 6:13pm

Salmotrutta wrote: »

I've been invited to a seminar for Gilenya patients at the end of the month (organised/sponsored by Novartis)... a talk about mindfulness, one about brain health, and ask the expert session (Michael Hennessy, who happens to be my neurologist). Anyone ever been to one of these? Are they worth going to? Might go along anyway, I've actually never met another MSer yet since diagnosis (only a year and a half)...

I got a text about this over the weekend. Invite must have went to my old address. What time is it on and where? I've also sent a text back asking for the info again but trying to see times so I can arrange a babysitter etc asap.

Hopefully I'll be going to it if you'd like to meet up there?

Salmotrutta · 24-01-2016 9:26pm

ash23 wrote: »

I got a text about this over the weekend. Invite must have went to my old address. What time is it on and where? I've also sent a text back asking for the info again but trying to see times so I can arrange a babysitter etc asap.

Hopefully I'll be going to it if you'd like to meet up there?

10.30 to 14.00, light lunch included. PM on the way...

embee · 07-02-2016 9:19pm

Am currently experiencing extreme pain in my hands. Up til now pain hasn't been a symptom of mine but I'm wondering if it could be MS related? I've also been very sleepy and have a lot of soreness throughout the body. My neurologist has said I am maxed out on steroids, she doesn't want me to have them too often but I feel as though this is the beginning of a relapse. Any of ye have to endure pain as part of your MS? It's pretty horrendous and hasn't reponded to nurofen plus or paracetamol.

byhookorbycrook · 07-02-2016 9:30pm

Yes to pain, lots of it. Every inch of my body feels like it has done a marathon. I had presumed this musco-skeletal pain was what everyone had and was taken aback to find many of my online buddies didn't have it!
I found difene helped a good bit, as does smacking on the voltarol gel!

byhookorbycrook · 07-02-2016 9:30pm

Yes to pain, lots of it. Every inch of my body feels like it has done a marathon. I had presumed this musco-skeletal pain was what everyone had and was taken aback to find many of my online buddies didn't have it!
I found difene helped a good bit, as does smacking on the voltarol gel!

Lollipops23 · 10-02-2016 9:03am

I have a conundrum; I've just been for an interview with a very large multinational (a big 4) and it went really well. I'm now at the stage where I'll be called back for a 2nd round and there's a very real chance I may get it...where do I stand regarding telling them about my MS? Am I obliged to tell them?

My only symptoms currently is some loss of sensation in one hand; I can still type (obvs!) and it doesn't affect most day to day activities. Is it something I need or should tell them about, and if so, at what stage?

fungie · 10-02-2016 9:53am

Lollipops23 wrote: »

I have a conundrum; I've just been for an interview with a very large multinational (a big 4) and it went really well. I'm now at the stage where I'll be called back for a 2nd round and there's a very real chance I may get it...where do I stand regarding telling them about my MS? Am I obliged to tell them?

My only symptoms currently is some loss of sensation in one hand; I can still type (obvs!) and it doesn't affect most day to day activities. Is it something I need or should tell them about, and if so, at what stage?

If it doesn't affect your work I personally wouldn't.

ash23 · 10-02-2016 12:15pm

Lollipops23 wrote: »

I have a conundrum; I've just been for an interview with a very large multinational (a big 4) and it went really well. I'm now at the stage where I'll be called back for a 2nd round and there's a very real chance I may get it...where do I stand regarding telling them about my MS? Am I obliged to tell them?

My only symptoms currently is some loss of sensation in one hand; I can still type (obvs!) and it doesn't affect most day to day activities. Is it something I need or should tell them about, and if so, at what stage?

You're not obliged to tell them. I personally wouldn't until I had the job and was permanent and then if I had a relapse or was struggling I'd tell them.

I was with my current employer when I was being tested and diagnosed so they've always known and it's good because they've worked with me when I've been off sick or needed anything but I was permanent when it happened. If I was leaving here I'd stay quiet about it until I was well in the door of a new employer.
It's not meant to be looked on as a negative by a prospective employer but the reality is that it probably would be imo.

ElleEm · 10-02-2016 12:29pm

If they ask, you should tell them. I was asked in an interview about the gap in my work and I simply said I was off due to ill health but followed it up with how excited I was to get back to work. They didn't ask me to expand and I got the job!

embee · 13-02-2016 10:30pm

Am checking into the NRH on Monday to try to improve my walking. Not allowed have Fampyra as I've a history of juvenile epilepsy. Am nervous about going in.. I've heard people can be in rehab for months.

Blinder · 15-02-2016 7:43am

embee wrote: »

Am checking into the NRH on Monday to try to improve my walking. Not allowed have Fampyra as I've a history of juvenile epilepsy. Am nervous about going in.. I've heard people can be in rehab for months.

Best of luck today Embee.

byhookorbycrook · 15-02-2016 7:40pm

Hope it goes to plan. Anyone I have heard of who has been in rehab for a long period of time has been "in" for serious injuries after accidents.

BohToffee · 17-02-2016 7:00pm

Best of luck embee, the nrh is a wonderful facility full of great staff, from the outside looking in it appears patients are there for a 6 week stint in the hope that will aide sufficient recovery for discharge but if they feel another few weeks would be beneficial they can and will keep you longer...

embee · 21-02-2016 11:37pm

First week was okay, just missed my daughter terribly. Was doing a load of assessments - physiotherapist did strength and power assessment and did the Berg balance scale, the occupational therapist did assessment on my ability to do stuff like cook meals, she also assessed my cognition and memory as I had struggled with those initially when I was in the Beaumont. Speech and language therapist cleared me as not having any difficulty in that area anymore. Also spoke to social worker and the consultant I'm under. All the assessments were within normal ranges. Really, the only part of me not working is my right leg but apparently with sufficient physio that'll come right. I'm the least unwell person there by a country mile.

Blinder · 22-02-2016 5:21pm

embee wrote: »

Really, the only part of me not working is my right leg but apparently with sufficient physio that'll come right.

That's great that it will help Embee. Have they given you any indication how long you need to stay?
Sorry to hear you're missing your daughter. Does she get to visit at all?
Hopefully though, but being away now and working with the physios, you'll go home a much more mobile and happy mammy

BohToffee · 22-02-2016 10:26pm

Have you asked to return home for weekends or would that be in anyway useful to you embee??? I used to collect OH on a Friday after work, home till Sunday night..

BohToffee · 07-03-2016 11:59pm

Regrettably my wife lost her battle today with this baxtard illness. I wish everyone here the best and will continue to dip in and out of the message board.
I wish you all the best in your efforts to overcome MS and do hope that someday soon a cure is found and provided to all...

Blinder · 08-03-2016 6:29am

Sorry for your loss BohToffee

Salmotrutta · 08-03-2016 12:45pm

Sorry to hear that BohToffee. Thinking of you and your family at this time...

ash23 · 08-03-2016 8:20pm

Very sorry to hear of your loss bohtoffee.

byhookorbycrook · 10-03-2016 7:04pm

Oh no, so sorry.

JenniFurr · 02-04-2016 9:31am

Hi, I'm newly diagnosed since January. I'm just wondering if anyone here carries a medical alert bracelet or similar? Is there a need for one to state you have MS and what medications you're taking?

kieranfitz · 02-04-2016 3:47pm

I know that they're available but I'm the only MSer I know so I can't say how popular they are.

ElleEm · 02-04-2016 7:59pm

JenniFurr wrote: »

Hi, I'm newly diagnosed since January. I'm just wondering if anyone here carries a medical alert bracelet or similar? Is there a need for one to state you have MS and what medications you're taking?

I can't ever imagine needing one. There are no medications I can't take due to the MS so I doubt emergency services would need to know about it immediately.

Lollipops23 · 04-04-2016 7:34am

JenniFurr wrote: »

Hi, I'm newly diagnosed since January. I'm just wondering if anyone here carries a medical alert bracelet or similar? Is there a need for one to state you have MS and what medications you're taking?

I haven't felt the need for one tbh!

JenniFurr · 04-04-2016 3:44pm

Thanks for the replies guys. I didn't really think many would carry one but I've had some dizzy spells lately and thought if the worst happened, like falling or fainting in public, it would be handy to have something to identify that I have MS. I've heard of people with other LTIs, like diabetes and epilepsy, having them and wondered if people with MS occasionally carried them.

Little My · 06-04-2016 10:19am

Hi, newly diagnosed since before Christmas. Just wondering if anyone has recommendations for apps to track symptoms, how I'm feeling etc, like a daily log but something handier? I think keeping a record might help me find triggers but I need something handier than trying to write a diary.

Sunny Dayz · 06-04-2016 10:40am

Little My wrote: »

Hi, newly diagnosed since before Christmas. Just wondering if anyone has recommendations for apps to track symptoms, how I'm feeling etc, like a daily log but something handier? I think keeping a record might help me find triggers but I need something handier than trying to write a diary.

My husband is on the medication Gilenya and the supplier of that has an app which I think you can record things like that. He doesn't really use it to be honest, only really for his reminder to take his tablet.

cj maxx · 06-04-2016 10:57am

Little My wrote: »

Hi, newly diagnosed since before Christmas. Just wondering if anyone has recommendations for apps to track symptoms, how I'm feeling etc, like a daily log but something handier? I think keeping a record might help me find triggers but I need something handier than trying to write a diary.

look up 'patients like me' and sign up.
might be what your're looking for

embee · 07-04-2016 6:21am

I've been in the NRH for seven weeks now, in that time I've managed to achieve my main goal of abandoning the walking stick. Am walking far better than I thought I'd be able to. They're all brilliant in here, and the icing on the cake is that I'm going home for good tomorrow

Blinder · 07-04-2016 6:30am

embee wrote: »

I'm going home for good tomorrow

Great news. Bet you can't wait.
7 weeks!! :eek: Did you stay there full time or did you get to go home at all ?

embee · 08-04-2016 6:22am

Blinder wrote: »

Great news. Bet you can't wait.
7 weeks!! :eek: Did you stay there full time or did you get to go home at all ?

First four weeks I was full-time but the last three weeks were only Wed Thurs and Fri.I got home every weekend so it wasn't seven weeks in here but it's just that my treatment and therapies were over seven weeks. Still though, can't wait to go home this afternoon.

Blinder · 08-04-2016 6:27am

embee wrote: »

First four weeks I was full-time but the last three weeks were only Wed Thurs and Fri.I got home every weekend so it wasn't seven weeks in here but it's just that my treatment and therapies were over seven weeks. Still though, can't wait to go home this afternoon.

A long time to be away from home!! Glad it was worth it and you are back on your feet again

Enjoy your homecoming this afternoon

byhookorbycrook · 09-04-2016 5:28pm

Delighted for you!

MS in all its glory

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