MS in all its glory

mamakitten

Broom wrote: »

Hi guys, my first ever post here!

I’m currently undergoing tests for a suspected MS diagnosis, this may sound like a silly question to some but if my Neurologist wants me to begin on medication, will I begin on medication such as Tysabri / Bebif / Copaxoone / Gilenya etc or some other medication?

Will I be on this medication for life or is it just for the first 2 years following diagnosis? Also i’ve heard this medication is extremely expensive? If true, is it covered under the Drugs Payment Scheme meaning i’ll have to pay a maximum of €144 a month?

Just on the meds payment you should apply for the medical card, sometimes they will grant it on medical grounds so all your meds, gp visits etc are free. It seems to vary from region to region as to whether you will get it but you should give it a go and make sure you send in a supporting letter from your doctor with it.

Re copaxone my partner is relapse free on it for the last 4 years.

fungie

I'm kind of in limbo at the moment. I had some mild symptoms a few weeks ago (found it difficult to run for example) and a lesion was found on my mri. I had a LP that came back positive for whatever they were looking for.

I know I will eventually be diagnosed but I'm just wondering are there/were there any other people in a similar situation and if so how long? I feel a lot of "tingles" these days,I'm not sure if its just me being v aware of things or more symptoms.

Im trying not to let this get me down but sometimes it does, this thread has helped hearing peoples stories.

This might sound like some sort of some non sensical rant and if so I apoligise.

byhookorbycrook

Rant away, it's a bitch of a disease.

ash23

fungie wrote: »

I'm kind of in limbo at the moment. I had some mild symptoms a few weeks ago (found it difficult to run for example) and a lesion was found on my mri. I had a LP that came back positive for whatever they were looking for.

I know I will eventually be diagnosed but I'm just wondering are there/were there any other people in a similar situation and if so how long? I feel a lot of "tingles" these days,I'm not sure if its just me being v aware of things or more symptoms.

Im trying not to let this get me down but sometimes it does, this thread has helped hearing peoples stories.

This might sound like some sort of some non sensical rant and if so I apoligise.

I was in the hospital for a bout of optic neuritis in September 12 and was diagnosed in Dec 12. So thankfully the limbo stage didn't last too long. But it was a horribly stressful time. I also got other symptoms during the wait and like yourself wasn't sure if I was being paranoid or not.

Have you any appointments lined up? Or any indication of what else they are waiting to confirm or rule out?

fungie

ash23 wrote: »

I was in the hospital for a bout of optic neuritis in September 12 and was diagnosed in Dec 12. So thankfully the limbo stage didn't last too long. But it was a horribly stressful time. I also got other symptoms during the wait and like yourself wasn't sure if I was being paranoid or not.

Have you any appointments lined up? Or any indication of what else they are waiting to confirm or rule out?

Its tough alright, I'm back working now and feel fine. I just ignore all the small things cause I feel there is no point getting worried about it. As far as I can tell ive fully recovered, am able to do more weights than before for example. I find the mental side is alot harder to deal with at the moment.

I've another MRI at the end of September to compare to my other one when I was a inpatient. I had one lesion which they called a CIS (clinically isolated syndrome?? maybe). Nothing else was ever mentioned, all my neuro exams were fine they just gave me the mri just to check. I dont think I can be diagnosed until more lesions appear or more symptoms. Hopefully neither for a long time!

Ive been reading up on low fat diets and stuff like that, does anybody do anything like that?

ash23

fungie wrote: »

Its tough alright, I'm back working now and feel fine. I just ignore all the small things cause I feel there is no point getting worried about it. As far as I can tell ive fully recovered, am able to do more weights than before for example. I find the mental side is alot harder to deal with at the moment.

I've another MRI at the end of September to compare to my other one when I was a inpatient. I had one lesion which they called a CIS (clinically isolated syndrome?? maybe). Nothing else was ever mentioned, all my neuro exams were fine they just gave me the mri just to check. I dont think I can be diagnosed until more lesions appear or more symptoms. Hopefully neither for a long time!

Ive been reading up on low fat diets and stuff like that, does anybody do anything like that?

My MRI showed up a few lesions so I think that was the basis of my diagnosis. Yeah CIS is a one off lesion. I think for a diagnosis of MS the lesions have to be "multiple" - hence the name :P

Personally I don't do any diets or anything. I probably should but I think I'm still just trying to wrap my head around the whole thing and personally I don't want to get too wrapped up in the illness. I feel that if I let it affect how I live my life, then I'll be more aware of having it. I suppose I tend to bury my head in the sand a bit. I was keeping a diary of symptoms initially but I found it quite morbid and I tended to dwell on it more.
So I just take my drugs and get on with life as is.

I might become more proactive about things once I've had a bit more time to get used to having MS.

fungie

ash23 wrote: »

My MRI showed up a few lesions so I think that was the basis of my diagnosis. Yeah CIS is a one off lesion. I think for a diagnosis of MS the lesions have to be "multiple" - hence the name :P

Personally I don't do any diets or anything. I probably should but I think I'm still just trying to wrap my head around the whole thing and personally I don't want to get too wrapped up in the illness. I feel that if I let it affect how I live my life, then I'll be more aware of having it. I suppose I tend to bury my head in the sand a bit. I was keeping a diary of symptoms initially but I found it quite morbid and I tended to dwell on it more.
So I just take my drugs and get on with life as is.

I might become more proactive about things once I've had a bit more time to get used to having MS.

Ive started to clean up my diet, not sure if it will help with anything ms related but its good to be healthy regardless. It also feels like ive some element of control over it (whether its true or not is another matter but sometimes its just good to think it does)

Ive just gone back to normal, im less anxious now since ive had more time and that I had v mild symptoms, doctors said most people wouldnt of sought medical assistance (maybe im a hypochondriac ). It could of been worse, now I just got to hope!

byhookorbycrook

Good balanced diet, plenty omega oil and maybe some Vit D and B

byhookorbycrook

Anyone here hoping to go on Lemtrada when it comes on-stream?

sqooka

Just wondering something here..... at the end of September I've an appointment with my neuro and will probably be starting treatment (copaxone). I was just wondering......how does that go? Do you generally get started right away or does it take a few weeks to get everything sorted? I've just wondering if I should book 2 days off work or will half day for the appointment be just grand as I probably won't be starting anything that same day? I know it might vary between different hospitals and clincs and the like, but I might be able to guage it from other people's experiences.....

byhookorbycrook

Usually it has to be ordered and a nurse from the drug' company comes out to you to show you how to inject, so it might take a few weeks to sort. Unlikely you would be injected on the day you are in.

sqooka

Thanks, I had a sneaky suspicion that that would be the case alright and you've just saved me from using my very limited days off work needlessly!

byhookorbycrook

Might be no harm to ring nuero's office but as I said, it's normally a few weeks.

discobeaker

sqooka wrote: »

Just wondering something here..... at the end of September I've an appointment with my neuro and will probably be starting treatment (copaxone). I was just wondering......how does that go? Do you generally get started right away or does it take a few weeks to get everything sorted? I've just wondering if I should book 2 days off work or will half day for the appointment be just grand as I probably won't be starting anything that same day? I know it might vary between different hospitals and clincs and the like, but I might be able to guage it from other people's experiences.....

Hey Sqooka

I got diagnosed end of Sept last year and after taking afew months off to do research on the different drugs and then Xmas i was brought into my Neuro in the Mater hospital at the start of Jan to tell him what drug i wanted to start on. He sent me for 5 days of IV steroids before i started on Copaxone so it was about 3 weeks after my appointment with him that i got to take my first injection but in that time the hospital sort all out with the drug company and the copaxone nurse and stuff. I think all i had to do was tell them what chemist i would be collecting the injects from and they call the chemist and sort it out so you have nothing to worry about.

You will probably have Bernadette Hamm who is the Copaxone Nurse and she is so nice. She makes you feel at home and talks you through EVERYTHING. She shows you how to load up the auto injector and shows you how to inject and everything. She will also give you stuff like cool packs incase the injection site stings,boxes to put the injections in and even FREE Copaxone Pens

The first injection you do it with her then she stays with you for 30 mins or an hour afterwards just to make sure your ok. Then after about a month or 2 you will get another visit from her to to make sure your keeping well then 6 months another visit (if you want it)

I hope that is some sort of help to you

ash23

I was a bit ..... silly when I started. I was diagnosed the week before xmas and the Neuro gave me a prescription for copaxone. I took it to the chemist who ordered it in. It arrived the next day, I took it home and read the leaflet and started injecting lol.
The copaxone nurse for my area called me a day or two later and met me to give the pack and show me the auto injection which I never use. So prob wisest to wait for the call

pbarr

Saw this on Facebook, just sharing with users of this thread.
http://guardianlv.com/2013/08/unique-stem-cell-therapy-for-ms-patients/

sqooka

I'm a bit curious, I've seen the auto-injector but I have a strong feeling I'd be more comfortable just injecting myself and saving that for the times when I'm not able to. Does anyone here who's on copaxone inject without the auto-injector? Or do you have to use it?

Also, just back from an mri, but I nearly had to ask the radiologist to change the song because I was giggling at how inappropraite the music was and I was afraid I'd move and mess up the images. There I was lying on the table, naked except for socks and pants under a gown, and feeling very naked too when this came on: http://www.youtube.com/watch?v=OofJsZ1fsI0

byhookorbycrook

Sqooka, it beats the death notices I get on Radio Kerry in my MRIs.

I had the autoject for Betaferon and it worked well for me, though it used to give a bang when you pressed the button and it took me a few mins each time to work up the courage! (Would have been worse without it!)My husband used to do it for me and if he was away I had some friends on call if I chickened out. Nothing like the thought of someone used to injecting animals to make you want to do it yourself.

discobeaker

I use the auto injector for Copaxone. Its kinda handy cos you set how deep the needle goes in (mine is at 7mm) so i know the needle will have gone in enough,not too far but just enough. I wasnt even shown how to do it without the auto injector but then again i didnt ask to be shown without it.

Speaking of music in the MRI machine,My friend was telling me that when he went for his MRI scan,he put on the headphone and went into the machine. The lovely doctor had tubular bells by mike oldfield on or as we know it.... The theme tune to The Exorcist!!!!

sqooka

Yeah, I've a feeling I'll just have to nut up and use the auto-injector. I'll ask anyway but it's probably easier. And oh dear, at least my music just made me laugh. I was thinking maybe in future I'd opt for classical but then something like that might actually creep me out a little. Somebody with a sense of humour is clearly in charge of creating these playlists.

byhookorbycrook

I wonder if we could bring our own cds?!?

discobeaker

sqooka wrote: »

Yeah, I've a feeling I'll just have to nut up and use the auto-injector. I'll ask anyway but it's probably easier. And oh dear, at least my music just made me laugh. I was thinking maybe in future I'd opt for classical but then something like that might actually creep me out a little. Somebody with a sense of humour is clearly in charge of creating these playlists.

After about a month of using the auto injector it kinda comes second nature to you. Its just the initial pressing the button that kinda creeped me out at the beginning but after doing it for afew weeks it was grand. But talk to the Copaxone nurse about it anyway. If you have Bernadette then you can ask her anything. She is so lovely to talk to and she makes you feel at ease

ash23

I'm on copaxone but I don't use the auto injector. Never have. I prefer to just use the syringes themselves. I'm not squeamish so I just pinch the skin, put in the needle as far as it will go, push down the plunger and wait a couple of seconds before removing it.

ash23

Still waiting for my MRI appointment so I rang up today and although the neuro marked it as "urgent" there still has been no MRI booked. So they're going to try and fit me in within the next week or two. Fingers crossed. Can't see what way the meds are or aren't working unless I get the MRI.

byhookorbycrook

Hope it happens soon, Ash

ash23

byhookorbycrook wrote: »

Hope it happens soon, Ash

Booked in for Monday week so at least it's soon enough. Should have used my health insurance in the first place. Lesson learned!

trishawisha

ash23 wrote: »

Booked in for Monday week so at least it's soon enough. Should have used my health insurance in the first place. Lesson learned!

If you have it, definitely use it! My neuro put me down for an MRI when I changed to public system, Feb 2012, no appointment yet and a few months ago I was able to contact central bookings for MRIs to be told it'll be next year. It really makes me fed up- would love to have had insurance from the start.

byhookorbycrook

Good news, guys!
http://multiple-sclerosis-research.blogspot.co.uk/2013/09/the-good-news-we-have-all-been-waiting.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+blogspot%2FWvYVL+%28Multiple+Sclerosis+Research%29

ash23

byhookorbycrook wrote: »

Good news, guys!
http://multiple-sclerosis-research.blogspot.co.uk/2013/09/the-good-news-we-have-all-been-waiting.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+blogspot%2FWvYVL+%28Multiple+Sclerosis+Research%29

Good to see more options becoming available!

byhookorbycrook

Hope to switch once it's available here. Am on Tysabri 4 and 3/4 years and am JC+