MS in all its glory

anny_ap

LittlemsSkelly wrote: »

Hi all,
LongJohn I was both a private (no health insurance) and am currently a public patient. I decided it would be quicker to just pay and get it sorted, then it turned out to be MS so an illness that lasts a lifetime...not really something a student can afford! I can PM you the names of the 3 neurologists I have seen ( 1 private,2 public ) and I can honestly say, the level of competency and professionalism I received from each has been outstanding.

As Val said, make a fuss! It's the only way you'll be seen, taken seriously and treated. When I first went in to the neurologist (private), he mention hospitalisation, in the future if necessary but the optic neuritis was clearing up, I still couldn't see a thing. The only reason I was bumped up from my original appointment of April 2011 to being admitted to an in patient in Sept 2010 is because I went to see my GP because I was getting the same ON pain in my left eye and he sent me straight in to the Mater hospital, where the astounding and magnificent Ophthalmic specialist was shouted at by my mother and the two of them ranted about the state of the healthcare system and I was admitted 20 minutes later and a very impassioned speech about how he was sick of seeing this happen, and he had the power to change it. My mam and I are in love with this man if you can't tell....:rolleyes:

I've never heard of one specific drug being better or worse than others TBH. Have you looked into drugs trials? St. Vincent's hospital were beginning drug trials with super high doses of vitamin D a while back for those with suspected MS or what would be considered one or two clinical attacks, first neuro tried to get me on but then I got diagnosed so fast there was no point. I would look into that because as far as I'm aware St Vincent's is THE MS hospital, a lot of research going on there now.

Hi, Could you please pm me the names of neurologists you attended. Thanks a lot

anny_ap

Guys could you please recommend good neurologist in Dublin. Thanks a million

byhookorbycrook

Mine is in Kerry so no use to you Anny-p!

ash23

Not in Dublin either I'm afraid.

coughdrops

I was initially diagnosed by Professor Tubridy in St Vincents Private. Since then I've been under the MS team in St Vincent's (public), and have dealt with different neurologists there- it depends who is on duty that day. Sometimes it's prof T or it might be one of his colleagues (I think one is called Dr Kelly?) I've found them all very good to deal with, but having had the most dealings with prof T during initial diagnosis etc, I've to say I really like dealing with him.

discobeaker

anny_ap wrote: »

Guys could you please recommend good neurologist in Dublin. Thanks a million

Im with Prof Tim Lynch in the Mater. I think he is really nice and can have a good laugh with you so puts your mind at easy. On my first meeting with him we spoke about old comedians for about 20 mins to put me at ease

Leogirl

anny_ap wrote: »

Guys could you please recommend good neurologist in Dublin. Thanks a million

I'm with Dr Hardiman in Beaumont. Cant say shes great from personal experience but I know she is highly regarded - just VERY busy!! I havent seen her myself in years, its always one of the team.

Leogirl

Can anyone here recommend a travel insurance company that doesnt charge a fortune the minute they hear you've MS?! I dont need any walking aids, havent relapsed in over 10 years & basically need no help at all but I'm being quoted an extra 25% plus when I put it on the quote request that I have MS.

coughdrops

I got single trip cover from AA in October. From memory it asked questions about walking aids etc, which like you I don't have, and the quote was v reasonable.

ash23

Leogirl wrote: »

Can anyone here recommend a travel insurance company that doesnt charge a fortune the minute they hear you've MS?! I dont need any walking aids, havent relapsed in over 10 years & basically need no help at all but I'm being quoted an extra 25% plus when I put it on the quote request that I have MS.

I used AllClear https://www.allcleartravel.co.uk/cgi-bin/lansaweb?procfun+options2+optn001+alc
It's a UK company but they have an option for ROI residents.

I got a single trip policy from them back in September for very little. Think it was about 15 euro.

Leogirl

ash23 wrote: »

I used AllClear https://www.allcleartravel.co.uk/cgi-bin/lansaweb?procfun+options2+optn001+alc
It's a UK company but they have an option for ROI residents.

I got a single trip policy from them back in September for very little. Think it was about 15 euro.

Thanks Ash 23 & Coughdrops.

I ended up with InsureandGo - seemed the most reasonable quote that covered me for any problems with MS while away. Although I'm fine & its unlikely anything would crop up, its better to be covered. I'm going to Brazil & its pretty hot at the moment so just in case the heat causes any hiccups. I think 11 days cover for €38 seemed ok - others were charging a lot more.


Looking forward to ditching the wind & cold for sun & samba

bnt

I'm not much of a drinker, only occasionally indulging in a couple of drinks over an evening. If I'd only known, years ago, that moderate drinking reduces the risk of developing MS, I would have made more of an effort to drink! :cool:

ash23

I drank like a fish and still got MS - oh well!

Leogirl

ash23 wrote: »

I drank like a fish and still got MS - oh well!

Same as - still enjoy a few glasses of red & I hear that might be good for MS, so no guilt! :-)

Big C

LTIS now open to people with MS

MS Ireland is encouraging our members who currently hold a medical card to apply for the Long Term Illness Scheme (LTIS) following recent changes to the scheme by the HSE which allows those with a specified illness – including Multiple Sclerosis – to hold the long term illness book in addition to a medical card.

Medical card holders are currently required to pay monthly prescription charges however the new changes mean that people with a specified illness such as MS can apply to the LTIS to cover the costs of medication associated with their MS. Prescriptions charges will no longer apply if you are approved for the LTIS.

We recommend that people with MS apply for the LTIS as it could potentially mean saving on, at the very least, some of the prescription charges which can accumulate from one end of the year to the other.

LTIS applications are processed at HSE Local Health Offices across the country.

copied from MS website

byhookorbycrook

I've always had the LTI book, since I was diagnosed.

ElleEm

I have both! Should I not have?

echo beach

ElleEm wrote: »

I have both! Should I not have?

You were allowed to have both but until recently HSE insisted that you use your medical card (and pay the levy) for all items that were covered on GMS. The LTI book could be used for approved items that aren't on the medical card. In some cases that HSE weren't aware that you had both (if the book was issued before you were required to submit a PPS number they had no way of checking) so couldn't enforce the rule they made up and have now changed.
If you have both make sure ALL your MS meds are included on the LTI book so that you can get them without paying the €2.50 each time. It also means you can get a six month prescription rather than the maximum three month one on GMS.
There is no change for LTI holders who don't have a medical card.

kkelly77

I applied for LTI book at the end of last year and received a response that I was not entitled to one as I had a medical card.

echo beach

kkelly77 wrote: »

I applied for LTI book at the end of last year and received a response that I was not entitled to one as I had a medical card.

Reapply now. Local offices have all been informed of the change in 'policy'.

fergal.b

Not sure what to make of this but my wife has just started on Dr.Terry Wahls diet http://www.terrywahls.com/_blog/Dr_Wahls_Recipe_Blog/calendar/2013/3/ I guess it can't do any harm as it all seems to be healthy food and at this stage my wife is willing to try anything, I'll let you know how she gets on after a few months. Has anyone else tried it ?

byhookorbycrook

Haven't tried a "named" diet, but I try to eat a variety of foods, plenty fruit and veg and also take omega oils and vits

anny_ap

Hi guys. Thanks for all your replies. We have booked an appointment with dr. Redmond in St James's privately. That's the quickest we could get. Have you heard anything about this particular doctor? I did read really good reviews about dr. Tubridy, but could not get through to his secretary. And may I ask as well how long did you have to wait to get your first public appointment? We are on the list , but I think it will take way too long....

Zil2011

I had to wait 5 months public for an appointment with dr Joan moroney in Beaumont hospital. She seems very thorough though and so far I have just had the one isolated incident so fingers crossed.

ash23

anny_ap wrote: »

Hi guys. Thanks for all your replies. We have booked an appointment with dr. Redmond in St James's privately. That's the quickest we could get. Have you heard anything about this particular doctor? I did read really good reviews about dr. Tubridy, but could not get through to his secretary. And may I ask as well how long did you have to wait to get your first public appointment? We are on the list , but I think it will take way too long....

I've no advice about the neurologist as I'm not in Dublin.
I waited a month for my public neurologist appointment. But that was because I had been seen in A&E for optic neuritis, was given an exam by the neurologist in A&E, referred for an MRI and then booked in for the appointment.
So they knew I had MS when I was being booked in as they had the MRI results.

All in all, I went to A&E in late September, had a brain MRI, was referred for a full spine and brain MRI which I had in October and was then referred for an appointment with the neuro in mid December.

ash23

Hope all are well. Just thought I'd update. I got my LTI booklet in the post yesterday. I posted it less than two weeks ago so it was a fairly quick turnaround time.
I have a medical card so it's not a big saving for me as I'm only on a couple of meds but figured I might as well sort it out sooner rather than later.

I'm also in the final round for housing for disabled people. Thankfully I'm well able at the moment and working full time but further down the line, it would be of huge relief to me to know I'll be living somewhere that I'll have support if I get worse or have a bad relapse.

Fingers crossed!

BohToffee

How do you know when you've truly accepted an MS diagnosis?
What changes for you??

byhookorbycrook

I don't know if I've ever really accepted the diagnosis fully. I still call me myself a person who was diagnosed with MS ,not an MS "sufferer, patient, victim.
Some of my rage at the unfairness, why me, why can't they cure me has gone, but there are days I feel like crying 13 years later."

Claire22Cork

I am a 39 year old mum of 2, who was diagnosed with MS 6 years ago. I live as normal a life as possible and run a small business from my home. Lately I have got so much enjoyment and support from a blog I started writing a few weeks ago.

I have always loved writing, so when I badly felt the need for a new project (call it mid-life crisis!) where better to start than blogging. I find that by seeing some humour in my illness and how it effects me, I get some solace and therapy from telling everyone about it! Ranting semi-anonymously.

Check out my blog post on MS and my treatment Gilynea
http://followyournose22.wordpress.com/2014/02/09/picture-me-on-an-armored-horse-2/

I'd love to hear what you all think

sawdoubters

I would not blog about your illness or your illness takes control of your life,your thinking about it,all the time,write a blog about your life,
try and do one thing new every day,go sky diving,skiing etc,take up photography,enjoy life