Forum

Newbie :)

Hi! I was diagnosed on Tuesday and have a million questions! I am 40, haven an 11 year old and don’t really have a boyfriend of 7 years anymore…I have a list of mess to consider - Fingolomid, Tysabri and another one that I’ve forgotten!..I’m having a blood test on Monday for PML and my first meeting with the MS Nurse on Tuesday…does anyone have any thoughts positive or negative - please please!

Hello hun.

Well now…of course you`ll have a zillion questions to ask and stuff zooming all over your brain.

I know how that feels, as do many, many folk here.

have you been having symptoms for long and how long have you waited for that pesky diagnosis?

You gotta give yourself time, to let it sink in…now that could take days, weeks, months, who knows. Then even when you think you`ve accepted it, something else could happen and have you all confused again.

Never, ever, beat yourself up about having a bad day…if you are working, dont think you gotta be a slave to it, if your MS makes you fatigued…take time off…there`s no medals for being a martyr you know luv… I found that out the hard way!

I myself was mis-diagnosed with PPMS for a long time, so although I dont actyually have it, I do have a similalry incurable, disabling condition.

You`ll get loads of support here, so ask away, whatever and whenever you need to.

How is your 11 yr old? Does he/she know of your diagnosis?

lots of luv, Pollyxxxxxxx

Hi Newbie,

I am on Tysabri and have been for 3 years. I was tested for the first time for the JC virus a couple of months ago and am JC+. I guess its all about risk v reward. I hope you are JC negative as it makes any decision easier, although I believe the majority of people would prove positive. I think recent blood tests give a titer score so you know how positive you are. A lot to take in, but feel free to post with any other questions you have. I had my 42nd infusion yesterday and the small group of us all went out for a pleasant christmas lunch after our infusions, so not all bad!. All the best, Peter.

hi

you need more advice on these drugs.

there is a ms decisions website (i think) that helps you decide.

it sounds as though your ms is aggressive because that is when tysabri is usually offered.

anyway you’re being offered the big guns so your ms had better watch out!!

as poll said, rest when you need to - not when it is convenient for other people.

you will come to terms with it, but in your own time.

take care of yourself the way you take care of your 11 year old.

carole x

Hi!

Firstly, don’t panic, keep calm and take a deep breath. After that, take control of the situation and start looking after yourself- diet, exercise, vitamins, minerals and, of course, treatment. I’ve just turned 45, got diagnosed beginning of June and was in hospital Sept 9- 13th for Campath (aka Lemtrada, aka Alemtuzumab).

This time last year, I was completely normal. Very, fit and very healthy. I’ve been very sporty all my life (since age 13). A week before I was due to run a Half Marathon, I thought I had suffered a stroke (An outrageous thought in itself!). It transpired that I was experiencing a ‘relapse’. I was diagnosed with Relapsing Remitting MS in June and battle commenced.

Your life can get pretty much get back to normal, if you take control- remember that!

As it stands, I have been able to resume my training. I am now back up to 7 miles at 8.30-9 min mile pace and I’m running that x3 a week at least . I have accepted that I am not the same person that I was before this s$%!t. For a start, I have slowed down and my left leg starts to drag as it gets tired. As I run around the track, I have to say to myself " Lift, lift, lift"- reciting that mantra ensures that I keep running and don’t end up a heap on the ground. As it stands, I am currently due to run another Half Marathon in March and a 24 Hour relay event in April.

When the dust has settled, hopefully, you too will see the pieces of the jigsaw coming together. Episodes of injury or illness in your life will make sense. I was hardly ever ill, but there were four episodes off significant illness that I suffered since 1995 at age 26 that now make sense ( hearing/ balance disturbance, bladder problem, co-ordination problems all symptomatic of MS). I kept the MRI scan that was taken of my brain in 1995 in the cupboard. After all, I was told there was nothing wrong. No further action required. In June this year, I took it with me when I went to see my Neuro Consultant just because I wanted it compared to the MRI that was taken this year.

He held it up and said straight away, " You had it then too!" . My jaw dropped to the floor. I could not believe it.

So, I had actually been living with this s&£!t since 1995 from the age of 26.

My husband was fuming. “Christ. You could have been on treatment”.

“No I couldn’t because there was nothing to give MS sufferers back then”. My MS nurse told me that too this year.

So, after all these years, I’m still fit. I’m still very healthy and i’m still moving.

It ain’t all bad really! At least I’m alive!

Best wishes from Tracyann xx

Hi again! OK, my name is Claire and I have been diagnosed with RRMS. I am currently not in receipt of any specifics apart from no longer being able to walk for miles (oh well) and I do have minor tremors in my hands that instantly go after a glass of red wine!..have so far only been given med suggestions by Neuro - Avonex, Rebif, Copraxone, Fingolimod and Natalizumab… (huge apologies for typos etc - Dr’s handwriting!!!)…anyway, I have NO idea what and even if I am going to go down that route - aaarrrgghh!..I have little support from BF - funny cos he got so much from me when he had a kidney transplant - so, while he has a choice of living trough this, I don’t :frowning: Any help/advice, very gratefully soaked up… Thank you xxxk

Hi Claire

Your treatment options are usually based both on your presentation ie. what symptoms you are displaying and what your MRI scans look like. In addition, the results of any other tests you have undergone. After all, these will provide your Neuro with hard facts as to the activity of your MS. My Consultant recommended Campath straight away because my MRI scan looked a little grim and my MS was clearly very active.

Following my meeting with the MS Consultant, I then saw my MS nurse who works closely with him. She explained all the disease modifying drugs available to me and gave me lots of reading material to assist me in making a final decision.

There is lots of very useful information available here about the treatment options too…

Good luck

Tracyann x