Originally Posted by LittlemsSkelly

This won't be very uplifting for the menfolk so look away now......
If you were young, I think 19 - 35 getting diagnosed, if your initial symptoms were visual (i.e double vision, ON, nystagmus) or had vertigo, had a low amount of lesions on initial MRI or few or no changes on subsequent MRI's and you're female, you're long term prognosis is excellent. You just need to hold on to that frame of mind. Not every person with MS will develop ON, similarly not everyone will develop weakness.

Ok, you've made my heart skip a thousand beats. I was DX in that age group and female, and the other bits. How is my long term prognosis excellent?

2008 was my diagnosis (September), had another scan 18 months (ish) later and no changes. I also quit my Betaferon over a year ago. Hope I don't jinx myself now, but I haven't had any relapses, bar a numbish hand last Christmas. I did get what I thought was vertigo in March, but on researching it before going to the GP I found my symtoms were more BPPV like and I was right. If I hadn't gone armed with that info, my GP might have just given me the oral steriods for MS/vertigo. I'd only get dizzy when I tilted my head a certain direction.

[Liloooney]

Thanks so much everyone! this is so helpful, and i'll definitly keep the countdown issue in mind when i go on my placement in january! thanks again, and keep the comments rolling if you can. Thanks.

[val444]

Hi all

Has anyone here tried Provigil? Is it easy to have it prescribed? Does it need to be prescribed by a neurologist, or can your GP recommend it?

It has been mentioned to me once or twice, and I can't decide if it is a good idea or not. I am so tired, all the time, can barely stay awake at work in the afternoons. Obviously, I was only diagnosed with MS recently, so I always thought everyone found things this difficult! I usually battle through, but since my diagnosis, I dunno am I giving in to it more? Now that I know I have legitimate fatigue? If that make any sense?

[trishawisha]

Hey all, this thread is great
Anyone know anything about, or try kinesiology?
Im very sceptical, but my dads workmate knows someone who found it really helped. I spoke to the therapist yesterday, who said after seeing him a woman with MS has been cured(wtf?)
Massive scam or may ease symptoms?

Like Val fatigue is a big problem for me, dont know anything about Provigil though.

[byhookorbycrook]

Originally Posted by trishawisha

Hey all, this thread is great
I spoke to the therapist yesterday, who said after seeing him a woman with MS has been cured(wtf?)
Massive scam or may ease symptoms?

Smells like that dr in Clare who was "curing" cancer. Will the "therapist" give you the name and no. of this woman so you can verify this?I'd imagine if somone really had cured MS we'd have heard by now

By the way, pre diagnosis, I went to a "faith healer" who told me I had seven bones out in my back (physically impossible) took my €50 per session for 8 sessions and told me he had cured me. Oh how I laughed-not.

[MS.ing]

Originally Posted by val444

Hi all

Has anyone here tried Provigil? Is it easy to have it prescribed? Does it need to be prescribed by a neurologist, or can your GP recommend it?

It has been mentioned to me once or twice, and I can't decide if it is a good idea or not. I am so tired, all the time, can barely stay awake at work in the afternoons. Obviously, I was only diagnosed with MS recently, so I always thought everyone found things this difficult! I usually battle through, but since my diagnosis, I dunno am I giving in to it more? Now that I know I have legitimate fatigue? If that make any sense?

MS =/= to fatigue! Just cause you have MS doesnt mean you automatically get fatigue, fatigue comes from disability usually, from reading your few posts I gedt the impression you werent disabled by MS in anyway [strength, balance that kind of way] I wouldnt say its the MS, your just tired? especially since you seem to be saying it has always been like that.

[trishawisha]

Originally Posted by byhookorbycrook

Smells like that dr in Clare who was "curing" cancer. Will the "therapist" give you the name and no. of this woman so you can verify this?I'd imagine if somone really had cured MS we'd have heard by now

By the way, pre diagnosis, I went to a "faith healer" who told me I had seven bones out in my back (physically impossible) took my €50 per session for 8 sessions and told me he had cured me. Oh how I laughed-not.

The therapist told me he would give me the womans number, after checking with her that its ok. My parents are mad for me to give it a go, dont have the money to do it right now, so they insisted they would pay. So Im going along next tuesday €60 for one hour.
I have a feeling 1st appointment will be assessing and then in order to make any difference you'll need about 10 sessions(€600)
Im willing to go along to the first one, but am extremely wary. Ill report back to what after.

[val444]

Um, I know I am only learning about this, and I am open to correction, but my neurologist seemed fairly certain that I was suffering from what she called primary fatigue. Apparently secondary fatigue is caused by symptoms, but primary fatigue is simply caused by "the result of the disease process itself, and is caused by demyelination in the central nervous system."

Also I am pretty sure that falling asleep at ridiculous times when sleeping normally at night, is classed as more than just tired? I dunno, I have several symptoms at the moment, and sure they are tiring, but the fatigue I am talking about is more sleepiness?

[bizmark]

well i decided to go on a holiday off fir a few weeks next month half way across the planet im not currently on anything so im a little scared of something happening but hey thats what travel insurance is for ..

First hoilday by myself ms can kiss my ass

[sillymare82]

I'm new to this so hope im doing it right, its great to fine a thread where people are talking about recent experiences. My sister has recently being diagnosed with RRMS and is currently on Rebif injections 3 times a week she is also getting vitamin B12 injections weekly at the moment. Currently she is getting on well with the injections and since January 2011 she hasnt had any episodes thank god, her last was optic neuritis, which she fully recovered from thankfully!
She gets very tired easily and has a job where she is continuously on her feet so that doesnt help but she is dealing with the tiredness. Her biggest problem at the moment are hot flushes which she is experiencing frequently, has anyone encountered these and if so is there anything which can help them?
Also are there vitamins which she should be taking, what about diet and exercise? She hasnt been given any information on either...
Would be very grateful for any information or shared experiences which you may have

[byhookorbycrook]

I take vit D and Udo's oil capsules( got them on my LTI book.)I have a thing called a "chillow" that goes into the pillow slip for night times. The sweats may be caused by the rebif,so taking paracetemol helped me with the flu-like symptoms when I was on the betaferon.

[sillymare82]

Originally Posted by byhookorbycrook

I take vit D and Udo's oil capsules( got them on my LTI book.)I have a thing called a "chillow" that goes into the pillow slip for night times. The sweats may be caused by the rebif,so taking paracetemol helped me with the flu-like symptoms when I was on the betaferon.

Thanks byhookorbycrook, she takes paracetamol before taking the rebif n hasn't had flu symptoms so far thankfully, injects just before bed! The flushes started before the injections so seem to b a symptom of the MS rather than the meds we think! Will investigate the "chillow", tks again

[outnumbered82]

I have been recently diagnosed with Ms and have been taking Rebif, the first month was fine no side effects but then as the dose went up i stared getting chills for hours during the night nothing i would do would make me warm, thank god that has stopped now i am getting head aches and nausea the next day after i take the Rebif. Is this normal everyone i ask who doesnt have Ms doesnt seem to understand and thinks it must be normal if its happening.
I really want to stop taking the Rebif as its making me feel worse, i was tired b4 taking it but now im tired all the time and feel sick, do these side effects stop?

[outnumbered82]

I have been recently diagnosed with Ms and have been taking Rebif, the first month was fine no side effects but then as the dose went up i stared getting chills for hours during the night nothing i would do would make me warm, thank god that has stopped now i am getting head aches and nausea the next day after i take the Rebif. Is this normal everyone i ask who doesnt have Ms doesnt seem to understand and thinks it must be normal if its happening.
I really want to stop taking the Rebif as its making me feel worse, i was tired b4 taking it but now im tired all the time and feel sick, do these side effects stop?

[trishawisha]

Hi outnumbered82, bad luck about the side effects.
I would talk to your neurologist to see if this type of side effect is something you are expected to live with or maybe you could try something else.
Im on copaxone and even though its a massive pain in the ass injecting every day, there are no side effects(besides the injection sites going hivey-not all the time though)
Iv been on it since April, havent been on any others so can't compare.
I hope it gets better for you