MS in all its glory

Lollipops23

Quick question- my mam collected my longterm illness form from the neurology clinic today. I'm to sign it and then she drops it into the local health centre. How long did you guys wait until the LTI book arrived? Did you have to bring it back in to get signed before you went to the pharmacy?

Salmotrutta

Lollipops23 wrote: »

I'll be going in to get hooked up to an ECG for 6 hours after I take my first Gilenya tablet, to make sure my heart rate stays stable.

I wasn't aware there were less cases of PML associated with Gilenya- it makes me feel a tad better about my decision tbh!!

Make sure you bring a book, or something to keep you occupied. It's a really boring 6 hours. Your HR will probably drop 10-15 beats for a while, but you're monitored well the whole time. It's an opportunity to get to know the MS nurses too, maybe note down any questions you have about symptoms or treatment and ask them then.

Re PML, so far it appears to be very rare in Gilenya patients with only 3 cases. It's much more of a concern with Tysabri. It's important to be fully informed of the risks and weigh them against the potential benefit.

Good luck!

echo beach

byhookorbycrook wrote: »

Just to let anyone considering Fampyra know that it's going to take a few jumps through hoops. It's not as simple as getting a script, you have to do walking speed tests- before and after and demonstrate an improvement of 20%. Sooooo, you can't get it for free until you actually get it for a month, then you have to be timed walking and then all the paperwork (and apparently there is lots! must then be approved by the HSE. FFS

This 'approval' system the HSE have put in place, seemingly having dreamed it up all by themselves without any input from those affected, must be done online by a consultant so the first requirement will be an appointment with a consultant. If and when they approve supply the approval can be withdrawn if all the conditions aren't met, so if you miss an appointment for any reason (and public patients are used to having appointments cancelled at short notice) the approval is likely to 'disappear' from the virtual world it lives in.
Pharmacists have been told not to accept any paperwork but to check the HSE site before dispensing. Be warned that access to the site frequently isn't possible outside of office hours not to mention from areas where broadband isn't reliable.

Whatever happened to consultation and patient-centered care?
Anybody would think they didn't want to pay for the stuff.

ash23

Lollipops23 wrote: »

Quick question- my mam collected my longterm illness form from the neurology clinic today. I'm to sign it and then she drops it into the local health centre. How long did you guys wait until the LTI book arrived? Did you have to bring it back in to get signed before you went to the pharmacy?

I wasn't waiting long at all. Maybe two weeks but that was about 3 years ago so not sure what the waiting times are like now.

It doesn't need to be signed by the pharmacy but when you are collecting your meds, you will need to sign a form in the pharmacy to say you've received your medication. If any of your drugs are on the high tech scheme you'll also have to sign another form for those too

embee

Am currently in the Beaumont having been here since September 15th. Went into an absolutely enormous relapse and my body essentially shut down. MRI showed tumefactive Ms that was very aggressive and I dont remember anything for the first two weeks of being hospitalised. I had a load of brain biopsies which thankfully ruled out MND and cancer. I have had five plasma exchanges, IVIG and remain on steroids for a few weeks. Was wheelchair bound but starting to stand and take small arepa again. Scariest experience if my life but im on the comeback trail.

byhookorbycrook

Jaysus, you poor thing.what's the plan for your treatment now?

ash23

So sorry to hear that embee. Must have been very frightening
.I wish you a speedy recovery.

Lollipops23

Jesus Embee that's terrifying. What's the craic with treatment now?

Blinder

my goodness Embee. Wishing you a speedy recovery

Blinder

Anyone know how this will affect the High Tech prescriptions?
Called into the pharmacy this evening but they hadn't heard anything

http://www.irishtimes.com/news/health/hse-stops-payments-to-lloyds-pharmacy-in-fees-row-1.2387691

byhookorbycrook

No idea, I wonder would someone in the LTI/High Tech office be the best to ask?

For the with relapsing /remitting MS have a look at this re treatment options:
https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions

echo beach

Blinder wrote: »

Anyone know how this will affect the High Tech prescriptions?
Called into the pharmacy this evening but they hadn't heard anything

http://www.irishtimes.com/news/health/hse-stops-payments-to-lloyds-pharmacy-in-fees-row-1.2387691

Has nothing to do with High Tech prescriptions.

Lollipops23

I have mild numbness on the right side of my face, around the eye and upper lip. It seems to be causing my eye to weep a lot, I'm dabbing at it with a tissue all bloody day.

Anyone had something similar happen?

Sunny Dayz

http://www.independent.ie/life/health-wellbeing/health-features/living-with-multiple-sclerosis-ms-once-people-realise-you-are-not-a-tragic-heroine-the-drama-of-diagnosis-quickly-fades-31603371.html


Article in the Irish Indo from a lady on being diagnosed with MS at 30.

Lollipops23

Sunny Dayz wrote: »

Article in the Irish Indo from a lady on being diagnosed with MS at 30.

Brilliant piece, I can identify with a lot of it.

ash23

Could have written that article myself. Same age diagnosed, same year, same symptoms (or lack of! ).....same politically incorrect jokes (my family call me Tiny Tim and my boyfriend always asks when I'm getting my blue badge when he can't find parking).....

Also the same drying up of cheerleaders which is good because life goes back to normal and bad because people aren't sympathetic anymore when I complain of being tired or feeling weak.

Nice to see the same kind of thoughts and situations are being experienced by other MeSsers as I call them.

kieranfitz

Hi guys, I've been told about vitamin D supplements and thought now that winter is on the way and the sun is becoming a scarcer and scarcer sight it might be time to get on them but what I'm wondering is can I claim them on the medical card or do I have to pay cause that may be an issue.

Lollipops23

My doc put them in my LTI book and reckoned they'd be covered by that. I'm still waiting for it to come back to me, so I'll let you know if they do cover it!

ash23

My neuro prescribed mine and I got the GP to add them to the my LTI booklet. The ones I'm on are called Desunin and are 800IU. I know there are stronger out there but those are the ones my neurologist put me on a few years ago and I've been getting them on the LTI book for over a year.

Salmotrutta

ash23 wrote: »

My neuro prescribed mine and I got the GP to add them to the my LTI booklet. The ones I'm on are called Desunin and are 800IU. I know there are stronger out there but those are the ones my neurologist put me on a few years ago and I've been getting them on the LTI book for over a year.

Can I ask what dosage you're on Ash? My neuro just recommended I take Vit D, the MS nurse in IV said 4,000 IU when I asked about it, so that's what I take. Would be handy to get it on the LTI but I didn't think vitamins were covered on it.

ash23

Just one a day so 800IU but I know that's low in comparison to what some other people are on. Just ask the GP to add it to the LTI book and send it in to them - as I said I've been getting it on the LTI for a good while now and no issues.

echo beach

kieranfitz wrote: »

Hi guys, I've been told about vitamin D supplements and thought now that winter is on the way and the sun is becoming a scarcer and scarcer sight it might be time to get on them but what I'm wondering is can I claim them on the medical card or do I have to pay cause that may be an issue.

Vitamin D is covered on your medical card, but you will have to pay the €2.50 charge. It isn't automatically approved on LTI but if the powers that be decide you need it because of your MS and not for some other reason it will be covered.

Lollipops23

My longterm illness book came yesterday, but I'm slightly confused about what I do with it. Do I have to bring it to my GP or do I go back to the Mater with it? The nurse I've been dealing with is on hols at the min, so can't ask her.

byhookorbycrook

Are the items you need on it and approved?

echo beach

Lollipops23 wrote: »

My longterm illness book came yesterday, but I'm slightly confused about what I do with it. Do I have to bring it to my GP or do I go back to the Mater with it? The nurse I've been dealing with is on hols at the min, so can't ask her.

It should have come with a letter saying what has been approved. You will have approval for 'Core List J' and can check if your prescription will be covered http://www.hse.ie/eng/services/list/1/schemes/lti/aprovmed/

Lollipops23

No it was just the wee book on it's own

Salmotrutta

I just got the book as well, no letter. If I recall correctly I think you have to bring it to your neuro and they write in the drug you need, plus you need the prescription, and bring both to the pharmacy you've nominated.

Blinder

Salmotrutta wrote: »

I just got the book as well, no letter.

Me too. Bought it back to neuro to fill in drug. Presciption had already been sent to pharmacy

littlemissfixit

I haven't been diagnosed with MS, don't want to write the "yet", it implies something. Today I rang my GP surgery to get results of the Lyme's, and it was negative. Although that in itself is a good news, it just seems to bring me closer to having nothing else to rule out. I was referred to neuro in Kerry but I hear this could take a very long time.
I had promised myself not to google, in fact up to the Lyme's test I was blissfully unaware of what was being thought and not said by my GP. I saw my GP in August to renew my thyroid meds and mentioned that since December last, on and off, I felt tingling in my hands especially but also in my legs (put it down to bad circulation). What prompted me to say something was that my head started feeling weird, foggy, unclear. So we done a series of bloods thinking it was my thyroid, or maybe B12. Everything came back perfect, thats when the referral was done and Lyme's ordered.

I allowed myself to google (I know BAD idea!) when the nurse who done my last blood had something written in her face that I couldn't quite read. What was Lyme's first and that's when MS popped-up for the first time. I stopped there then (big on denial me!), and I was back today after the phone call to GP and I find ye...

Had a good few weeks of feeling well, I spent a half day in a spa enjoying the saunas, the pool, etc. But after that, a strong pain came to the back of my head, the tingling less evidently comes on and off, it's just there and a lot worst at night and in morning, I have had random pains at back of head, lower back and sides, and little shocks in my arms, my legs sometimes feel as though they come out of the freezer, my left eye doesn't see as well it's blurred... and there are days where I just can't function and I snap at nothing. So it's only now that I've started to worry a little. Haven't told my husband a single thing, just don't see the point of both of us worrying if it's nothing...but it's lonely.
Could it be nothing, what else could be looked at causing those symptoms?
Do I just wait as long as symptoms don't get worst, and how long for if anyone as an idea about Kerry neuro waiting list?
Should I see an eye specialist do determine if it's unrelated?
I think I am reluctant to do anything so as to not get anything "ruled out" but the wait not knowing is getting to me now, What a contradiction! (And it's only a couple months too)

cojack101

Just got diagnosed this week. 29/M. My opthamologist gave me the news. Said the MRI report said the lesions were are all in the place they would expect to find MS. She said the technicians report is very straight forward and clear cut.. so they won't be looking for any other cause of my ON. I have to wait until January 21st to see a neurologist.. and I need answers.

Can anyone please help. I can't find any statistics or solid information.

Do I have to go with injectable treatment or can I choose oral medication?

What % of people with MS end up with progressive-relapsing MS. Is it inevitable that I will need a wheel chair? How likely is it that in my 60's / 70's I'll still be able to walk, do wood work, paint, work in my garden. Are there any elderly people with MS that are mobile?

Does anyone have any statistics around age? What % of people lose their mobility in their 30's, 40's, 50's 60's 70's?

It was discovered because I had ON, does that mean I am inevitably going to go blind in that eye? If so statistically how long from developing ON in 1 eye does it take you lose sight in that eye altogether.. 10 years, 20 years?

There seems to be 2 avenues of information online about MS. The first is: It's a manageable condition. The second is: loss of bowl control, extremely reduced mobility, massive reduction in quality of life. What happened to the manageable part? Is managing it just buying yourself a few more years until these symptoms hit you and you end up with the same mobility as Bernadette Forde or Marie Fleming?

I have seen this:



But these headings have a BIG spectrum.