MS in all its glory

raindrop

byhookorbycrook wrote: »

Our nurse couldn't possibly do all that - even though she is exceptionally hardworking , just not enough hours in the day - especially as she isn't specifically MS. Our Neuro is very hands on- she is the one with whom we discuss treatments etc. Though the nurse would be very knowledgable too . I think the service you describe above may because some Neuros wouldn't be in patient contact as often as our lady . Our two ladies work more as a team than either / or

Both our nurse and Neuro are absolutely incredibly hard working . I think there is a different model in ours to what you describe above , I'd be a bit wary that the nurse role above means far less access to the Neuro ( not a slight on our nurse , wouldn't swop her for diamonds )I wonder if anyone attending there could enlighten us?

Just to add again I don't have a nurse at all just a rear access to a neuro and so I thought it would be useful if I could contact a nurse as well when needed as you said before to take pressure off the neuro.
Thanks for the info, I will get in touch with st Vincent myself and see what they think.

Carrie6OD

raindrop wrote: »

I found the below on the St.Vincent website:

The predominant role of the MS Nurse Specialist is to support and advise persons diagnosed with MS attending our service. The MS Nurse provides support and advice throughout the disease trajectory from diagnosis onwards.
The MS nurse also provides information and education on treatments available and prescribed for persons diagnosed with MS.
She also provides information on symptom management of MS and the psychological and social impact of MS for those who are diagnosed at all disease stages.
The MS Nurse also liaises with all the multi-disciplines both within the hospital and community in order to ensure continuity of care for MS sufferers.
It is important that persons diagnosed with MS contact the MS Nurse Specialist if they are concerned about new symptoms or have a relapse of their MS.

This is exactly what I am looking forward as currently I don't have ANY access to such a service.

St Vincent's are most definitely providing that service with their fantastic MS nurses. I believe there are a team of them and I liaise with them with regard to everything that's going on. They have answered every single question I have asked and offered lots of advice and support.

I was previously a patient in the hermitage and the MS nurse there was even more personable and helpful and generally just extremely practical and kind. I was sorry to leave her when i transferred to Vincent's. Got way more from the MS nurses that I have met than any neuro I have attended. I think they are so important so I understand why you'd like to gain access to that service.

embee

I am under Dr Costello in Beaumont and the two MS nurses there are absolutely brilliant.

embee

Just a quick question, I have longstanding, severe iron deficiency anaemia. My GP has suggested I get an intravenous iron infusion, but I am just so reluctant to spend any more time in hospital. Just wondering really, is it MS related, maybe the meds have caused iron depletion? I am taking Galfer twice a day but the last Hb was 8.9 last week. A month ago it was 9.1.... Ideally it should be a minimum of 12.5. I'm trying to set plenty of red meat and green veg but it's just not increasing. Can MS have an impact on iron uptake?

Salmotrutta

embee wrote: »

Just a quick question, I have longstanding, severe iron deficiency anaemia. My GP has suggested I get an intravenous iron infusion, but I am just so reluctant to spend any more time in hospital. Just wondering really, is it MS related, maybe the meds have caused iron depletion? I am taking Galfer twice a day but the last Hb was 8.9 last week. A month ago it was 9.1.... Ideally it should be a minimum of 12.5. I'm trying to set plenty of red meat and green veg but it's just not increasing. Can MS have an impact on iron uptake?

My wife has iron deficiency (she's not MS) - not severe, but has had to take supplements regularly. She switched from Galfer to another med (I'll have a look at home to see which one - edit: Ferrograd) as the Galfer wasn't very effective for her, and is harder on the stomach. Worth checking out other oral options first if you really don't want IV.

Loretogirl

Over the past few days my walking has gotten really bad, could walk for 30 minutes unaided now I can't walk 10 steps inside without hold the walls. Went to my gp as I thought I may have an infection but he said no. Now I am being sent for blood tests to check my Thyroid as he said this may be causing my problems.

Has anybody here experience this and can anything be done about it.

I am also on Gilenya.

Thanks

byhookorbycrook

Is there a chance you could be relapsing?

raindrop

Loretogirl wrote: »

Over the past few days my walking has gotten really bad, could walk for 30 minutes unaided now I can't walk 10 steps inside without hold the walls. Went to my gp as I thought I may have an infection but he said no. Now I am being sent for blood tests to check my Thyroid as he said this may be causing my problems.

Has anybody here experience this and can anything be done about it.

I am also on Gilenya.

Thanks

I am on Plegridy. Have exactly the same problem about 10 days. Planning to see my neurologist soon. Expecting bad 😢🀔. Please keep us updated.

HONKEY TONK

Have any of you been reading about the drug Ocrevus

I see the FDA in the US have approved it

byhookorbycrook

It's basically a tweaked version of Ritux , which a few people have had here already . Promising for secondary progressive at the very least .

Blinder

Reading this gives me hope that there might be a cure sometime in the future
http://www.telegraph.co.uk/news/2017/04/23/breakthrough-multiple-sclerosis-research-scientists-discover/

If they find out what causes it, it will be one step closer to finding out how to cure it

ash23

sugarman wrote: »

Should one worry about an onset of new symptoms suddenly? Well, not new.. just in new parts of the body.

A week ago my nose got numb/tingly/pins and needles, few days later it spread to my forehead, then onto my head and now the last few days my cheek/mouth area. My cheeks muscles are really sore, like ive been laughing for hours.

I was hoping itd subside and my GP said theres probably no point in going the hospital as they cant really do anything until they have a look at my 2nd MRI im due in 4 weeks.

I was only diagnosed in February, they were reluctant to even call it MS at the time. More so just demyelination for now as there were only 2/3 areas affected and it was caused by a biological drug, not naturally.

Im on no meds and the neurologist I seen did say to come back him if I noticed any significant changes/new symptoms.

Ive an appointment on Tuesday I was hoping to hold off until but im unsure if I should. At the same time I dont want to overeact by going to A&E over nothing.:o

As you've an appointment Tuesday I'd wait. If you hadn't an appointment for two or three weeks I'd be saying to contact your neurologist.

A&E probably wouldn't do anything for you, just tell you to contact the neurologist. Unless it's affecting your swallow then I'd not be considering it an emergency and I'd wait til the Tuesday appointment.

I had a sudden onset of symptoms in Feb and called the MS nurse. Three days before I saw the neurologist and two weeks before I had the steroids. It's not really something considered urgent. It can be left a few days if it's just tingling etc .

vmb

ash23 wrote: »

A&E probably wouldn't do anything for you, just tell you to contact the neurologist. Unless it's affecting your swallow then I'd not be considering it an emergency and I'd wait til the Tuesday appointment.

Well, maybe that depends on the hospital.

Every time I've had a relapse (more than 5 per year), I am told to go to A&E. Once there, I am checked by a neurologist and then admitted.

Last time has been 1 week ago, been discharged yesterday.

byhookorbycrook

VMB, what meds are you on? That's a lot of relapses per year.

vmb

I started with Avonex 2 years ago. 6 months later, we moved to Tecfidera due new lessions in the MRI.

Tecfidera didnt work and I had lots of relapses. After the first MRI, my neuro offered me Lemtrada. I had the first round on Sept 16.

After that, I've had a relapse in christmas , another 1 month ago, and again, now. MRI shows new lesions, so... I wont receive 2nd year of lemtrada, it does not work for me...

byhookorbycrook

Apparently it is common to relapse after dose 1 of Lemtrada , which is why a minimum of 2 are given . Don't lose heart .

vmb

My neuro thinks I should have a bone narrow transplant, given the extreme active MS I am suffering.

Luckily, my baseline is still quite good, but I need to stop this asap.

byhookorbycrook

I'd absolutely go for it so. There have been a few Irish people who have had it in England so there is a precedent .There is a closed group on FB with lots of helpful information.

f1ves

Hi all. Just wondering if anyone has travelled outside of Europe while receiving meds on d lti book. Im talking 3 months plus say Asia. If u can do u need a pharmacy out there to post meds to and can u keep changing it as u move around. I'm on copaxone at d mo and ms is pretty stable im male in 30s. Im guessing insurance will be harder hitting than d heat so im going on hols to spain later in year . So that will let me know if its a runner at all (heat wise) for next year all going well. Any thoughts or experience would be appreciated.
I know this might be better off in a travel section but ms side might help i.e good r bad idea
Thanks

murfilein

f1ves wrote: »

Hi all. Just wondering if anyone has travelled outside of Europe while receiving meds on d lti book. Im talking 3 months plus say Asia. If u can do u need a pharmacy out there to post meds to and can u keep changing it as u move around. I'm on copaxone at d mo and ms is pretty stable im male in 30s. Im guessing insurance will be harder hitting than d heat so im going on hols to spain later in year . So that will let me know if its a runner at all (heat wise) for next year all going well. Any thoughts or experience would be appreciated.
I know this might be better off in a travel section but ms side might help i.e good r bad idea
Thanks

I traveled for 6 weeks when i was on betaferon.

I picked up 2 month worth of betaferon at the pharmacy. I told them in traveling, so it was fine.

I had all the medication i needed with me.

irishrver

As I read this I am sitting in 25c in Gran Canaria and the heat has been very good for my symptoms I also had the misfortune of Lyrica tablets taken from our hotel but thankfully my wife had a copy of all my meds prescription went into the pharmacy and the lady was going to dispense everything including Gilenya. My own pharmacy in Cork told me she would dispense 6 to 8 months of them if needed but would only enter them on a monthly basis on my lti card. Heat is something that affects everybody differently some friends thrive on it and others can't go out in the heat. Life is for living so go and have fun !

echo beach

HSE have given directions to pharmacies that no more than 3 months supply of medicines should be supplied on LTI to a person leaving the country. After that they say you are no longer resident and should access healthcare and medications in your new country.
If you are out of the country for more than 3 months you are supposed to inform them.

embee

Got lemtrada round one in July last year, and I had a clinical relapse in September which required steroids. Haven't had a relapse since (eight months on now!) and this is the longest I've been without them since I was diagnosed in April 2014. Getting round two in July.

Blinder

embee wrote: »

Got lemtrada round one in July last year, and I had a clinical relapse in September which required steroids. Haven't had a relapse since (eight months on now!) and this is the longest I've been without them since I was diagnosed in April 2014. Getting round two in July.

That's great embee. Really hope that it continues and you suffer no more relapses

byhookorbycrook

Just to make people aware before having an MRI: One of our cohort wasn't allowed to have a brain scan yesterday because she had used dry shampoo that morning! Some perfumes and moisturizers may also cause the same issue- news to me, but there you go.

Lollipops23

byhookorbycrook wrote: »

Just to make people aware before having an MRI: One of our cohort wasn't allowed to have a brain scan yesterday because she had used dry shampoo that morning! Some perfumes and moisturizers may also cause the same issue- news to me, but there you go.

What the WHAT?!!! Jesus would it kill them to let us know stuff like that in advance??

byhookorbycrook

I have had upwards of 20MRIs by now and had never heard it!

Carrie6OD

sugarman wrote: »

Had my 2nd MRI today, 3.5 months on from my diagnosis. Should know this day next week how it went.

Just a quick one about catheters and pain...

...It was my first time having contrast dye for an MRI and the radiologist made a mess of the initial catheter. She'd put it in, stung no more than a needle would and pumped a wee bit of saline in as a test. Didnt really feel it.

While I was in the MRI machine she went to pump in the dye and it wouldnt go in. She was forcing it a lot, like pushing down on the needle. Felt really heavy pressure around the injection site.

Another girl came in and had a look, had a bit of a go at the other girls job and stuck a new one in my other arm. Didnt feel a thing and it went straight in no bother and said thats how it should be done.

Since this morning the first arm is killing me. Veins are paining from my hand to shoulder. Feels weak, numb and tingly. 2nd arm is completely fine.

Ever happen to anyone else? Is it anything to worry about?

Sorry to hear about your diagnosis.

I've had a few of the contrast dye MRIs and that has never happened to me. Last time the radiologist kept asking me if I felt a burning sensation! He was pleased when I said I didn't, so I think he might have thought he'd made a balls of the cannula. Defo not normal to be in pain so maybe give them a ring and seek their advice.

byhookorbycrook

Yuk, Sugarman, is it still sore?Have you a contact for your neuro nurse?

Lollipops23

Was meant to have my check up this Thursday- my mother has come from from France to be there for it with me. Got a letter today saying it's been cancelled.
Beyond livid. Anyone got any advice?