MS in all its glory

Deco99

Hi, can I ask what notification one needs to give your health insurance provider if you've recently been diagnosed with MS. Diagnosed around 2 months ago. Been insured with same provider for 2+ years. Have been submitting all claims for scans and consultants over last year roughly

cj maxx

I don't know Deco. Sorry.
Hows everyone coping with the cold weather?
Personally I'm loving it. I hate hate the hot humid weather of late July and August. This weather suits me though as long as I take my baclofen.
Happy Christmas everyone

Gremlinertia

Deco99 wrote: »

Hi, can I ask what notification one needs to give your health insurance provider if you've recently been diagnosed with MS. Diagnosed around 2 months ago. Been insured with same provider for 2+ years. Have been submitting all claims for scans and consultants over last year roughly

I don't think I have any answers but you are in a fortunate position as its not a predisclosed illness. I would use your insurers online help or whatever is available to ask.

Nigel Fairservice

Deco99 wrote: »

Hi, can I ask what notification one needs to give your health insurance provider if you've recently been diagnosed with MS. Diagnosed around 2 months ago. Been insured with same provider for 2+ years. Have been submitting all claims for scans and consultants over last year roughly

I'd agree, if you had it before an official diagnosis then you should be fine I'd imagine but you should really check it out with your insurer directly to get a definitive answer on it. I'd imagine you'd need a letter from your neurologist confirming the diagnosis date.

I took out insurance a year after I was diagnosed and told them about the MS when I took the policy out. I'm 3 years into the 5 year exclusion on preexisting conditions. My diagnosis took 18 months and I'm not sure what an insurer would have done if I took out insurance during this 18 month grey area. I knew something was wrong with me but I was in a diagnosis limbo. I don't know how an insurer would look at that.

MyAccount

Deco99 wrote: »

Hi, can I ask what notification one needs to give your health insurance provider if you've recently been diagnosed with MS. Diagnosed around 2 months ago. Been insured with same provider for 2+ years. Have been submitting all claims for scans and consultants over last year roughly

I've never told my health insurer - never been asked, I just send in the claims and they get paid, no Qs asked - that said I have been with the same provider since birth so nearly 50 years (with one of the more comprehensive plans). (was diagnosed c.5 years ago - claim for two to three consultants visits at €200 a time and similar number of MRIs, and maybe 8 to 10 GP visits a year at €65 a go (insurer pays 75% of such visits, with no limit - also had another completely unrelated issue this year which necessitated a couple of consultants & physio visits - again just sent them in / all paid with no Qs.

On a related note I looked at moving insurance about a year ago (to see if I could save a few Euro on the annual premium) - told the potential new insurer about my MS - to paraphrase, "once I was looking for comparable cover pre-existing conditions were fully covered" - didn't move in the end as there no discernible difference in the cost.

MyAccount

cjmc wrote: »

I don't know Deco. Sorry.
Hows everyone coping with the cold weather?
Personally I'm loving it. I hate hate the hot humid weather of late July and August. This weather suits me though as long as I take my baclofen.
Happy Christmas everyone

Changes in temperature doesn't suit me - I seem be more prone to chesty coughs this time of year - maybe to do with the immunosuppressive meds?, so I tend to avoid running or cycling on cold days

eimsRV

I hope everyone had a good Christmas. I started a new treatment early december, Mavenclad. Its tablets taken for 5 days, then a 4 week break then tablets again for another week. And thats it for a year. So far I've had mild side effects, mainly headaches and my fatigue is a bit worse than normal. Looking forward to 2020

adam88

Hi guys. Just checking on something. How often should a person with MS visit their consultant. Diagnosed Jun 18, on gilenya and otherwise fit and well. I’ve only been to my consultant once in that time. No symptoms except the fatigue

eimsRV

Hi Adam, I see mine every 6 months, with an MRI annually. Its been like that since I was diagnosed 5 years ago.

adam88

eimsRV wrote: »

Hi Adam, I see mine every 6 months, with an MRI annually. Its been like that since I was diagnosed 5 years ago.

I’m in the public system. Might ring and find out when I’m due to go back. Might elect to go private p

Nigel Fairservice

adam88 wrote: »

I’m in the public system. Might ring and find out when I’m due to go back. Might elect to go private p

I'm public as well. I see my neurologist about once a year. I'm seeing her in January. I haven't had a MRI in nearly 2 years. I remember the exact date because it was my birthday that day.

Loretogirl

Adam,
Just thinking the same myself during the past few days as I have had a couple of flare ups over the past couple of months. I am a public patient at Vincent’s have SPMS take Gilenya, have not seen the Consultant in over 1.5 years.

Must call MS nurse - the hospital now have one again, to discuss and try and organize a visit.

Now that there are so many new DMTs available there may be one more suitable for me.

Carrie6OD

I go to my neuro once or twice a year. Often a waste of time. Find my meetings with the MS nurse way more useful. It was the nurse who pushed me to go onto Ocrelizumab as consultant had no interest whatsoever.

Salmotrutta

I haven't seen my neuro in 2 years but I have an annual MRI and the MS nurse gets the results to me, no new lesions last 2 years so no need to see the consultant. I'm a private patient and he could easily make 100 quid for a 10 minute appointment but if he's happy he doesn't need to see me that's fine by me. No news is good news.

Fourwinds

I see my Neuro at least once a year which he says is to be able per scribe me with my tysarbi even though I see him quiet often in hospital when he sticks his head in to say hi and to check is everything ok. The MS nurse is top class and she tells me how the MRI went before I leave. I am also a private patient

MyAccount

I see my Neuro at least twice a year, and sometimes more frequently depending on need or if I have Qs / concerns - mostly the consultations are brief, maybe 10 mins max, but cost €200 a time - to avoid this cost I had been visiting the GP (at €65 a visit but she says she not qualified to opine, and sends me on the Nuero, and so I can't help bit feeling a bit "un-loved".

I am hearing people talking about their MS nurse - am curios to hear about such - my Neuro says the hospital (a private clinic in South Co Dublin) doesn't have one?

I can't help but wonder if access to one might save some of the non routine consultations, as at time I have been left feeling like I was asking "stupid" Qs (despite the fact that I pay handsomely for his time ?!?!)

What does the nurse do ? Anyone ?

Carrie6OD

MyAccount wrote: »

I see my Neuro at least twice a year, and sometimes more frequently depending on need or if I have Qs / concerns - mostly the consultations are brief, maybe 10 mins max, but cost €200 a time - to avoid this cost I had been visiting the GP (at €65 a visit but she says she not qualified to opine, and sends me on the Nuero, and so I can't help bit feeling a bit "un-loved".

I am hearing people talking about their MS nurse - am curios to hear about such - my Neuro says the hospital (a private clinic in South Co Dublin) doesn't have one?

I can't help but wonder if access to one might save some of the non routine consultations, as at time I have been left feeling like I was asking "stupid" Qs (despite the fact that I pay handsomely for his time ?!?!)

What does the nurse do ? Anyone ?

I was a private patient in Hermitage and then my neuro transferred me to st vincents. I find the public system fantastic when you’re finally in it. (Took 1.5 years to get initial appointment but now have standing appointments twice a year) Not mad on my neurologist but the MS nurses are amazing. Literal angels. They know all the practical sides of MS and ask all the “right” questions. I can email them any queries I might have and they are straight back to me. I’d rather see them than the neurologist to be honest.

MyAccount

Carrie6OD wrote: »

I was a private patient in Hermitage and then my neuro transferred me to st vincents. I find the public system fantastic when you’re finally in it. (Took 1.5 years to get initial appointment but now have standing appointments twice a year) Not mad on my neurologist but the MS nurses are amazing. Literal angels. They know all the practical sides of MS and ask all the “right” questions. I can email them any queries I might have and they are straight back to me. I’d rather see them than the neurologist to be honest.

Thanks Carrie. That is good to hear, the reason I went private was down to my GPs advice that the public system is useless. That said from what I hearing about the Nurses that are a valuable resource and are not available to me currently, so if need advice etc, it see the Neuro and pay. That said my Pharmacist is great / very grounded and gives practical advice about anything I ask, with no judgement.

Carrie6OD

MyAccount wrote: »

Thanks Carrie. That is good to hear, the reason ňi want private was down to my GPs advise that the public system is useless. That said from what I hearing about the Nurses that are a valuable resource and are not available to me currently, so if need advice etc, it see the Neuro and pay. That said my Pharmacist is great / very grounded and gives practical advice about anything I ask, with no judgement.

I find the public system fantastic compared to private. For neurology... have gone private for pregnancies. Everything is easy.... once you are in it! I had to get X-rays, bloods etc recently to see if I qualify for ocrevus and was able to pop in at my convenience and get it all done in the same place. No major hanging around. I do get MRI privately though. My pharmacist is also great. Would go to him first before ever going to GP! I find the neurologist meetings extremely rushed and feel like my questions aren’t really worthy of his time sometimes. But the MS nurses seem very happy to answer anything and nothing is deemed silly or embarrassing. You should try to get referral to public, you could always maintain your relationship with your private neurologist aswell.

Nigel Fairservice

Carrie6OD wrote: »

I find the public system fantastic compared to private. For neurology... have gone private for pregnancies. Everything is easy.... once you are in it! I had to get X-rays, bloods etc recently to see if I qualify for ocrevus and was able to pop in at my convenience and get it all done in the same place. No major hanging around. I do get MRI privately though. My pharmacist is also great. Would go to him first before ever going to GP! I find the neurologist meetings extremely rushed and feel like my questions aren’t really worthy of his time sometimes. But the MS nurses seem very happy to answer anything and nothing is deemed silly or embarrassing. You should try to get referral to public, you could always maintain your relationship with your private neurologist aswell.

I get the same rushed feeling with my neurologist. She is good and I do like her but sometimes I feel my appointments are like a box ticking exercise for the neurology department. I always have to ask specifically about how my last MRI went. The first few times I saw my neurologist she'd look at the MRI images right in front of me and not tell me anything about them. I did find that very annoying. My MS nurse is good but apart from seeming away with the fairies half the time I talk to her :pac:

MyAccount

Carrie6OD wrote: »

I find the public system fantastic compared to private. For neurology... have gone private for pregnancies. Everything is easy.... once you are in it! I had to get X-rays, bloods etc recently to see if I qualify for ocrevus and was able to pop in at my convenience and get it all done in the same place. No major hanging around. I do get MRI privately though. My pharmacist is also great. Would go to him first before ever going to GP! I find the neurologist meetings extremely rushed and feel like my questions aren’t really worthy of his time sometimes. But the MS nurses seem very happy to answer anything and nothing is deemed silly or embarrassing. You should try to get referral to public, you could always maintain your relationship with your private neurologist aswell.

Thanks. Yeah rushed is a good word, I invariably feel he is watching the clock, and wants to move me on ASAP. And heaven forbid I ask anything outside his agenda.

Carrie6OD

MyAccount wrote: »

Thanks. Yeah rushed is a good word, I invariably feel he is watching the clock, and wants to move me on ASAP. And heaven forbid I ask anything outside his agenda.

My neurologist wrote a book recently (I’m sure you’ll guess who he is!) and he said in the book that his outpatients clinic is what he dreads the most in his working week!

adam88

Thanks for all the great replies. I’m fortunate that my MS isn’t really affecting me too bad yet. Nurses were great at the start and took time to answer questions that I had and offered me lots of advice. Only dealings with them now is just to order a new script. A new neurologist was appointed to me this year, don’t even know their name haha. My chemist was brilliant but they kept on and on about diet and cutting out wheat and in the end I just moved, couldn’t be dealing with it

cj maxx

MyAccount wrote: »

Changes in temperature doesn't suit me - I seem be more prone to chesty coughs this time of year - maybe to do with the immunosuppressive meds?, so I tend to avoid running or cycling on cold days

I've noticed that 'changes' of the season knock me till I get used to them . I've had a virus or a cold that I've had for about 2 bloody months and can seem to shake. So that has left symptoms worse.

Lollipops23

Lymphocyte count came back before xmas, I'm at a .4 when I had been .7 consistently. Explains my run of bad health! They won't do anything unless they drop to .2, so I'm just having to grin and bear it for now.

Salmotrutta

Lollipops23 wrote: »

Lymphocyte count came back before xmas, I'm at a .4 when I had been .7 consistently. Explains my run of bad health! They won't do anything unless they drop to .2, so I'm just having to grin and bear it for now.

You're on Gilenya, right? That is pretty low alright. Did they say anything about changing your dosage, or do they hope your lymphocytes recover naturally?

Lollipops23

Salmotrutta wrote: »

You're on Gilenya, right? That is pretty low alright. Did they say anything about changing your dosage, or do they hope your lymphocytes recover naturally?

I am on Gilenya. They're waiting to see if they recover naturally, I'm back for more bloods next month to see. They don't seem all that worried, but I'm fed up of being ill. It's been 5 months of it.

Salmotrutta

Lollipops23 wrote: »

I am on Gilenya. They're waiting to see if they recover naturally, I'm back for more bloods next month to see. They don't seem all that worried, but I'm fed up of being ill. It's been 5 months of it.

Best of luck with it. I've been stable at 0.8 for a few years and still get plenty of colds and throat infections so I can't imagine how hard it is at 0.4.

MyAccount

Mine dropped in the past year from 0.9 to 0.7.

Caused some confusion / with my pharmacist who was concerned at the fact that I regularly fly (100 plus flights in 2019) (with work) as he maintains that the recycled air and inability to avoid obviously unwell folk potentially puts one at risk.

Neuro says the low count is hardly a surprise due to the DMDs (I am on Plegridy) but did question if I should consider how often I fly, as if I pick up something it will likely hit me harder than a "normal" person. As it happens international travel won't be a major feature this year. If nothing else I won't miss the 4 am starts

Deco99

Thanks for the replies on my health insurance question. This seems to be a good forum for just chat. Being a very sporty person, curious as to what changes to fitness regime would be needed to take into account MS. The medical profession always err on side of caution to cover their ass. For example, not MS related, you could have a back injury and doctor might say 3/4 months but a sports orientated physician would give the green light after a month. The line between wrapping yourself in cotton wool and pushing too hard you do harm. Just curious as to people's experiences here for dos and don'ts regarding fitness