MS in all its glory

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

Loveinapril

What hospital are you with? I am a public patient in Beaumont. I see my neuro team annually at the least but have had a couple of kids in the last two years so have been in more frequently due to the pregnancies, change in meds and MRIs. I would have thought you would need at least bi- annual blood tests on Gilenya.

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 ?

Loveinapril

MyAccount wrote: »

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 ?

Having access to a nurse would definitely help you. Beaumont's nurses have a mobile you can ring between 10am- 12pm three times a week but I often ring out of those hours, leave a message and they call me back. I would ring when I was pregnant, need something from my file or asking advice. I recently phoned because of a side effect from my meds and she got a prescription for me and sent it out because I am not due in the clinic until March.

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

MyAccount

I'm not a medical professional but over the last years have become an expert on my MS. That said my MS is my MS. We are all different so what works for me will likely not work for others.

We all have different challenges so I would suggest only you can decide what works and what doesn't. In my case fatigue is one of my major issues.

What's your sport?

tinofapples

On the subject of fatigue, have any of you experience of Amantadine? I've been on it almost a year now and don't see any benefits whatsoever from it so I'm considering binning it as I'm of the opinion why take some medication that has no positive impact on me.

adam88

Deco99 wrote: »

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

I do strenuous work and asked my consultant what should I do. She said live as if I don’t have ms and do everything you were doing beforehand but just listen to your body. I thought that was good advice

adam88

On another note I’m struck down with the flu (real flu, not man flu) my body is gone into limp home mode. Any advice on how to ride out this storm

Deco99

MyAccount wrote: »

I'm not a medical professional but over the last years have become an expert on my MS. That said my MS is my MS. We are all different so what works for me will likely not work for others.

We all have different challenges so I would suggest only you can decide what works and what doesn't. In my case fatigue is one of my major issues.

What's your sport?

Football

MyAccount

OK can't comment as I haven't played football for 35+ years (I never had anything approaching skill) - my beloved sports were endurance sports, mainly running and cycling - typical events / races for me ranged between 2 to 4 hours (and occasionally longer) - I have found that the longer events don't work for me as my energy levels / fatigue becomes an issue (both on the day and in the days after), hence I have adjusted the length of time I exercise for, and rarely enter races etc, but have increased the frequency and that seems to work reasonably well, at least, most of the time

I cannot comment on football, which I imagine is more a case of repeated short bursts over a c.90 minute period (with intermittent bouts of lower lever activity / periods where one can recover?), but open to correction here.

We are all different but for me having some issues with one leg and drop foot, I have had to more or less give up running, haven tripped a couple of times (and suffered minor injuries).

Personally though, I would say give it a go - your body will tell you what is possible - on a positive not were one unlucky enough to fall, presumably it would on be grass which is less hard than falling on tarmac / concrete as happened me (as all my running was "on road") - Give it a go and celebrate what you you can do rather worrying about what you cant.

my 2 cents anyway

eimsRV

Has anyone gone through the process of getting life insurance recently? I’d love to move house, and seems like the biggest hurdle is getting life insurance cover in place. Any tips?