MS in all its glory

byhookorbycrook

Standard procedure, of course neuro would want up-to-date info.

sadie06

Ah...thanks for that. I misunderstood so.

outnumbered82

Do they always ask to look at the disk. I had a scan in June and from the minute he handed me the scan disk I felt like no one was reading the scan. He made a comment like bring it with u for ur next check up! They don't pass scans from the private to public hospital. Never got results. When I rang they hadn't seen them yet but said they would look and if there was anything wrong ring me. Still not convinced they have read them!

byhookorbycrook

My neuro is on the same site as the MRI centre,so stuff gets shared easily.I'd ring and ask they contact you when they have looked at them

Worried 27

Hey everyone I finally got my diagnoses today and it is ms! I've been given so many leaflets on the four types of injections, avonex,copaxone,betaferon and rebif! I've read thru them all already and was just wondering if anyone had an advice or information I should take into account when deciding which way to go! It's all very overwhelming!

byhookorbycrook

Welcome to our little club!Sorry to hear it though.:(

I discussed it with my neuro before I picked one. She felt at the time that betaferon was the best for me, even though it meant injections every second night.I changed to avonex down the line and didn't think it was as good. (Changed due to site reactions)

outnumbered82

Worried sorry to hear that but at least you know what it is. I started on Rebif and will prob move to the pill form soon. That is due to bad site reactions and only being able to stomach half doses. One thing is not to believe everything the drug company leaflets they always make the drug seem like its the best one. Did you ask about the pill instead of injections?

discobeaker

I totally forgot to reply to this,been so busy the last week.

So last wednesday,i got diagnosed with MS (turns out it doesn't stand for Marks and Spenser's)

Gotta go to the hospital on the 16th to talk to my doctor and see where to go to from there. For those of you on treatment,how long after did you start to feel the side effects (if any) Im heading to London on the 23rd (after the last few weeks i deserve a holiday) and i just dont want to be away from home and then start getting the side effects.

@Worried..... Dont worry L,we will be fine. We just have to stay positive.
This is the start of our new lives

outnumbered82

It took a month for me to feel side effects.. They start you off on small amounts to build u up by then u hopefully have a tolerance for it. When I started Rebif I did 2 weeks at 8 then a week at 16 and 22 then I was at 44 when the real side effects happened

discobeaker

Is that 44 tablets a month???

Worried 27

I did ask about the tablet form but he said I have to start on an injection form first before I'd be allowed the tablets.

@ discobeaker , yeah we are gonna b fine it's just trying to decide what ones to start I'm very nervous about the whole injecting urself but I'm sure u get use to it. At least ya don't have to wait to long to see ur doc to get things moving.

outnumbered82

@ discobeaker no there the units / amount you inject the injector I got which is the rebi smart does it all for you so there is no dial up it injects the same amount all the time.

discobeaker

Aww right. I thought it was 44 tablets a month. Phew!!!!

I guess i wont know more until the 16th and i take it from there. Any suggestions of questions to ask my doctor on the 16th. I havent got a clue

Yeah Worried.... we will be fine This thread is great so thanks to all the people have helped me understand more about this feckin thing. I really appreciate it

byhookorbycrook

Questions:
What disease modifying drug does he/she suggest as best for you?

If you have pain,you'll need to get pain relief sorted(neuropathic pain doesn't respond to to ordinary painkillers)

You'll need to get sorted with a Long term illness book/card.

Letter for your insurance to say you are fit to drive(essential you tell them-if not your policy could be invalid)

discobeaker

byhookorbycrook wrote: »

Questions:
What disease modifying drug does he/she suggest as best for you?

If you have pain,you'll need to get pain relief sorted(neuropathic pain doesn't respond to to ordinary painkillers)

You'll need to get sorted with a Long term illness book/card.

Letter for your insurance to say you are fit to drive(essential you tell them-if not your policy could be invalid)

Cheers for that byhookorbycrook.

Well as for pain its just my knees and my back thats in pain so i will ask about that.

I dont drive so i dont have to worry about that.

What is a Long term illness book/card for??? Do you use it for anything?

outnumbered82

Long term illness book is issued by the health board after you register your self as having ms all your meds will be written in it. You give it to the chemist where you'll be picking your meds every month. The meds are free to ppl who have long term illnesses. To register from what I remember I got a form off health board sent it in to the hospital then they send it back and you give it to chemist. Then you get a book which you give to hospital they list your meds and you bring it to chemist. All a lot of bull if you ask me but you know the H s e they love to make it difficult.

byhookorbycrook

LTI book covered my paracetomol,which I took before betaferon to counteract side effects, it covers all my pain meds-and there are lots -anything you need for your MS really.There is also tlk to you would get free GP care if you have an LTI.

discobeaker

Thanks for the advice byhookorbycrook and outnumbered,

I will look into that LTI book on Monday.

Thanks for the advice. Its really Appreciated I hope you all are having a good weekend

ash23

Hi all. Am so glad I found this thread.
I am back next week for a brain and spinal MRI. No diagnoses and obviously am hoping it isn't MS but am petrified it will be.
I am female, 30 and fairly healthy. Back in March I developed a numbness and heavy feeling in my right leg, radiating from my back, down my entire thigh and down my inner leg.
I went for an MRI but it was a lower back one, nothing really showed up and the numbness went away so no more was done.
A couple of months ago I got a terrible kidney infection and for a few weeks after I was slightly incontinent, suffering leaks but again, it resolved itself and I thought no more of it.
And then I got ON and that was when the doctor sort of sat up and took notice. I went to the eye clinic and for a contrast MRI of my optic nerve. I was seen by a neurologist but my neuro exam was normal, I feel well, not overly tired but I am a bit forgetful.
I am now waiting on the brain and spine MRI. Thankfully the neurologist has held off doing a lumbar puncture until I have the MRI (the man is not a monster!).

I am so scared. I have been trying to be optimistic but I have a sense of foreboding that it will be MS.
I had 3 days of IV steroids which more or less cleared up the ON. I'm back at work now and feel well.

I am a single parent to an almost 10 year old girl and I have just met the man I believe I am going to marry. I turned 30 a couple of weeks ago. I have my whole future ahead of me and I am so petrified that it is all going to fall apart in a couple of weeks.

fergal.b

Hi ash23, sorry to hear of your troubles it's sounds like you had a tough year hopefully things will get better for you soon and if they do find something on the MRI you can start a treatment to help keep the fun in dysfunctional
It might be a bit early to be talking about MS but if it is you will still have your whole future ahead of you, it may not be the same as everyone else but then again you have managed as a single parent up till now so I'd say you could cope with anything life throws at you, nothing is going to fall apart in a few weeks you might be given a name of something you have but you will still be the same person you are today with the same 10 year girl and a new man by your side planning a future.
Keep strong and just deal with each little hurdle as it comes, try not to worry too much and stay positive you have your whole life ahead of you and it's going to be a roller coaster ride with some up's and down's but still great fun even if it does make you feel a bit quizzy at times.:)

Best wishes.





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byhookorbycrook

Wasn't married too long when I was diagnosed,thought my life and indeed the world had ended. Ok, I can't do things I used to be able to do, but I am still working, driving and riding my horse,life is a bit different to what I had hoped it would be, but life still goes on and do you know what?It's not so bad.My sister in law was diagnosed with cancer around the time I was diagnosed with MS and she is sadly gone from us for over 7 years.
Hope you get answers soon.

pbarr

byhookorbycrook wrote: »

Wasn't married too long when I was diagnosed,thought my life and indeed the world had ended. Ok, I can't do things I used to be able to do, but I am still working, driving and riding my horse,life is a bit different to what I had hoped it would be, but life still goes on and do you know what?It's not so bad.My sister in law was diagnosed with cancer around the time I was diagnosed with MS and she is sadly gone from us for over 7 years.
Hope you get answers soon.

You are so right. I was diagnosed with primary progressive ms in 2009 and since then it has progressed to the stage that I need two crutches or a wheelchair for whenever I'm outside of the house. The sad fact is that we know of lots of people locally who were diagnosed with cancer since then and they are no longer with us.

byhookorbycrook

We all come to our own "It could be worse" moment, but I have come close to slapping perfectly healthy people who tell me so!!

discobeaker

byhookorbycrook wrote: »

We all come to our own "It could be worse" moment, but I have come close to slapping perfectly healthy people who tell me so!!

Im only diagnosed 2 weeks and im kinda in that still telling people stage whats up with me. The amount of the "Oh,it could be worse" or "Aww you will be grand".... if i hear that one more time im probably going to implode

byhookorbycrook

Don't implode-explode!!I hopped off someone early on and maybe word got round!

discobeaker

Haha,i will take your advice.... i shall explode in future

Ok... just had a bit of an interesting phone call from my aunt. She was telling me about a friend of hers who was diagnosed with MS,was on treatment and everything, she had alot of the same symptoms as most MS sufferers would have. For some reason she got tested for Celiac and turns out she had that after all and its not MS. The interesting thing in my case is that,and i didnt know this,but ALOT of my dads side of the family are Celiac's.

Has anyone else heard of something like this?

Worried 27

Hey everyone, sorry I've been away from boards a bit I've just been trying to let the news of ms sink in properly! I've decided to start on avonex hopefully it will mean a little less down time that I'd only be injecting once a wk! Just wondering if anyone here has been on it and how it affected you?

byhookorbycrook

Did Avonex when I came off the Betaferon, wasn't as good for me, but works really well for many.

Worried 27

byhookorbycrook wrote: »

Did Avonex when I came off the Betaferon, wasn't as good for me, but works really well for many.

Thanks for that, I'm feeling very nervous now about the whole thing. It's starting to make ms more really! I think talking about it was one thing but now knowing I have it and starting treatment makes it all hit home! I appreciate all the advice and to all the people who have take the time to reply to me thank you! X

byhookorbycrook

You'll be fine. Have you someone to help with the injecting?You get trained but I always found it hard to get courage up to push the plunger/click the autoject as I am a bit of a wuss about things like that. (Don't mind others doing it,canulas etc though.)my husband used to do it for me and if he were away I had one of the horse crew on standby in case I chickened.Nothing like the thought of someone used to injecting animals coming at you to make you brave!!(Though I know of a vet not too far from me who used to inject a friend.)

Look at things this way, this stuff ain't pleasant, but if it keeps you going until they find a cure, then go for it.