MS in all its glory

cojack101 wrote: »

Just got diagnosed this week. 29/M. My opthamologist gave me the news. Said the MRI report said the lesions were are all in the place they would expect to find MS. She said the technicians report is very straight forward and clear cut.. so they won't be looking for any other cause of my ON. I have to wait until January 21st to see a neurologist.. and I need answers.

Can anyone please help. I can't find any statistics or solid information.

Do I have to go with injectable treatment or can I choose oral medication?

OK, first of all, don't panic. I know it's hard, but googling symptoms will only give you worst case scenarios. It is highly unlikely you will get all, indeed many, of the symptoms you read about. With the new medications and looking after your diet and fitness there is a very good chance you will live a pretty normal life. The medication depends on your MRI scans, and what you decide in consultation with your neuro. There is a growing movement towards skipping the first line drugs (interferons, injectables) and putting patients on the more effective drugs like Tysabri, Gilenya etc. You need to have that discussion with the neuro, but the priority is to get on some form of treatment as early as possible.
I'm on Gilenya (oral) which is going well for me. Others are on Tysabri and wouldn't give it up for all the tea in China.

cojack101 wrote: »

What % of people with MS end up with progressive-relapsing MS. Is it inevitable that I will need a wheel chair? How likely is it that in my 60's / 70's I'll still be able to walk, do wood work, paint, work in my garden. Are there any elderly people with MS that are mobile?

No, it is certainly not inevitable. There is every chance now that you will be able to do those things. Elderly people now with MS have had the condition for decades, during which they had no effective medications, so their progression is no indication of what yours will be, or anyone else currently diagnosed.

cojack101 wrote: »

Does anyone have any statistics around age? What % of people lose their mobility in their 30's, 40's, 50's 60's 70's?

Everyone is different, and has a different disease progression. With the newer drugs and even better ones in development, you may never lose your mobility.

cojack101 wrote: »

It was discovered because I had ON, does that mean I am inevitably going to go blind in that eye? If so statistically how long from developing ON in 1 eye does it take you lose sight in that eye altogether.. 10 years, 20 years?

No, many people with ON never have a recurrence of ON. It is commonly the first symptom (I got it too), but your eyesight may return to completely normal.

cojack101 wrote: »

There seems to be 2 avenues of information online about MS. The first is: It's a manageable condition. The second is: loss of bowl control, extremely reduced mobility, massive reduction in quality of life. What happened to the manageable part? Is managing it just buying yourself a few more years until these symptoms hit you and you end up with the same mobility as Bernadette Forde or Marie Fleming?

Those people generally have primary progressive MS. You almost certainly have RRMS, given your ON. Basically long periods of remission interspersed with occasional relapses. Again, the newer drugs drastically reduce the number of relapses, indeed some posters on here have been relapse-free for years on Tysabri, for instance.

[QUOTE=cojack101;97407796I have seen this:



But these headings have a BIG spectrum.[/QUOTE]

MS can cause a huge variety of symptoms, but I believe that these statistics are already out of date. People diagnosed now will be on better treatment from the outset of their disease, and the numbers affected by these symptoms are certain to decline as relapses become fewer and less often.

I'm currently reading Overcoming MS by Professor George Jelinek - it might be more encouraging for you than google searches that bring up a lot of worst case scenarios. He presents a lot of evidence and statistics that might answer some of your questions above, but more importantly shows that you can live a full and normal life with MS (he has it himself and is relapse free for over 10 years)

I have taken your advice and went to see about my eye, the optician couldn't see me before Thursday so I just went to my GP instead and she has sent an urgent referral to neuro now. MS was mentioned a few times by herself but it's all a bit of a blur now. I can feel a part of me trying to convince me that it's in my head, until a pang of random pain or numbness hits me. Only hope urgent means weeks rather than months...

Wondering if anyone can shed a bit of light on optic neuritis for me, I went to GP Tuesday (loss of vision left eye, field of vision reduced slightly same eye, she said eyes were healthy), should have asked more questions but always the way, the questions pop-up on way home and also I was a bit shook by the MS/urgent referral etc.
So basically I have had reduced vision in my left eye since last Friday, no pain, slight discomfort at times. Yesterday afternoon (Wednesday) I was struck by pain in my head all around the same eye, paracetamol took edge of pain but didn't get rid of it until sometime this morning. Now, no pain, still vision loss.
Can this be how ON presents? When (If) do I need to do something about it? Or is it something that is likely to resolve itself?

littlemissfixit wrote: »

Wondering if anyone can shed a bit of light on optic neuritis for me, I went to GP Tuesday (loss of vision left eye, field of vision reduced slightly same eye, she said eyes were healthy), should have asked more questions but always the way, the questions pop-up on way home and also I was a bit shook by the MS/urgent referral etc.
So basically I have had reduced vision in my left eye since last Friday, no pain, slight discomfort at times. Yesterday afternoon (Wednesday) I was struck by pain in my head all around the same eye, paracetamol took edge of pain but didn't get rid of it until sometime this morning. Now, no pain, still vision loss.
Can this be how ON presents? When (If) do I need to do something about it? Or is it something that is likely to resolve itself?

I think it's unusual to have ON without some pain. Certainly when I had it it was like severe eye strain. Colour perception was very poor, and bright lights hurt, I ended up wearing sunglasses in the office til I got it seen and found out what it was. Steroids definitely helped it clear up quicker, so try to get seen as soon as you can. If you have health insurance or can afford to go private I'd ask your GP if they can refer you to a private neuro, you might get an appointment a lot quicker. Getting seen quickly helped take a lot of stress off for me. I highly recommend going private if you can. You can always ask to be referred to the public system again afterwards.

littlemissfixit wrote: »

I could probably stretch to consultant's fee for appointment privately (no health insurance), but I presume they wouldn't be able to tell me all that much without MRI or others, don't know the cost for them but I'm sure they don't come cheap!

Personally I wouldn't go paying for a private consultation without having the MRI done first. It MRI could cost up to €500 but you need a referral for it, and a neurologist will know the scans to order.

Try to sit tight. Do you know what neurology clinic your gp has sent the referral to. If so, try phoning them next week and see are you in the system and if they have a date for your appointment yet. If not, don't worry, as it takes a few weeks for your case to be reviewed, so just phone back the week later. Once you have a date, I bet you will feel better as its the waiting that is hard.

Hope you opened up to your hubby, and have a shoulder to lean on.

also, even when you get to see nuero, you will probably be sent for MRI and/or lumbar puncture and/orother tests before anything is diagnosed/ ruled out so don't depend on getting any answers on the day of your appointment.
spend the time between now and then figuring out what you want to tell him about, what you want to ask. Write this down so its not going round and round in your head.
On the day of the appointment bring your hubby or a friend. Someone that knows the questions that you want to ask, so they can prompt you about them if something slips your mind.

for now, try to relax and breathe. I know it's easier said than done but otherwise your will make yourself ill with stress.

cojack101 wrote: »

Do I have to go with injectable treatment or can I choose oral medication?

is that a question of choice in ireland?

my neurologist told me he is not aware of any oral medication being released in ireland. i'm from germany, and just a couple month after i came here, oral medication apparently became available in germany.... argh. i'm stuck with betaferon injections.

Salmotrutta wrote: »

Oral medication IS available in Ireland - Gilenya (fingolimod) is a daily tablet and is more effective, according to the science, than betaferon. It is paid for on the LTI scheme. Your neuro should know this. Possibly they are reluctant to offer it, as it is a second line treatment, unlike the injectables, but more and more neuros are recognising that going straight to a more effective drug is better for patients. Read up on Gilenya and inform yourself about the benefits vs side effects etc, and then push your neuro about it. They may have a good reason for not offering it to you, but they should at least know about it and be able to explain why they are not considering it for you.

oh i remember my neurologist in germany talking about gilenya, but she said thats an "escalation" medicament. not sure what exactly that means though.

i will look it up and talk to my irish neurologist about it.

I'm still waiting to start meds, does anyone know if I'm ok to get my flu jab? I usually get one because I have chronic asthma, but just want to make sure it's I'm not going to interfere with starting the meds.

I'm into the Mater on Thursday to take my first dose of Gilenya. I'm actually quite nervous.

Salmotrutta wrote: »

Welcome to the Gilenya club!

Ha, thanks! I've been so focused on getting treatment started that I hadn't much thought beyond it. Like after Thursday, that's the rest of my life. Just seems daunting....

Sound like a good plan littlemissfixit. And tell hubby to stop googling