MS in all its glory

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Do tell how you get on with it!

You have been so through much so I know its a huge step but I know you will handle it. You have helped my son and his family with your honesty and courage with your posts. Knowledge is power. I know people who have been to Russia for HSCT and are flying it. So best of luck and fly high too!

2013 (ithink) was DX , but can trace symptoms back to when I was 3 or4.

On Avonex, and MRI's stable. All my lesions in 2013 MRI,s were old ones.

Really hoping I'm not going PPMS !

My cousin died of MS aged just 23, she would have been 50 had she lived. I miss her all the time. Her Mam (my aunt) was diagnosed with it as well some years later and has also passed away and I have another cousin who has it as well. It's the curse of our family. I am lucky I've so far escaped it and I hope I always will.

To everyone living with MS I have only a smidgeon of understanding of what you go through and to all of the families supporting their loved ones - you are warriors all and I could only hope to be as strong of will.

My son, aged 22, was given booster jab by the gp. Got it about 3 weeks ago. Defo not by age. So try your gp

I'm living in the North now , but had contacted my GP about flu vaccine and booster and told ' don't call us we'll call you ". I normally have flu in October approx. but no word on it. Parents flued and boosted in the south

I'm on Gilenya as well.

Only started on that in September, after a flare-up (was on Plegridy before that) - I can't recall the precise timing, but it was only a matter of weeks after I started the Gilenya that I got a text from the HSE out of the blue, I can't recall exactly, but it more less said "your physician" has put you forward for a booster, and to attend Citywest at "x" o'clock on "whatever day" (that was about three weeks ago). Maybe ask your Neuro? or MS Nurse.

(I see my Neuro privately, and / so don't have access to a nurse, but he generally responds within a few days to emails; usually via a return e-mail via his secretary, but to his credit he has telephoned me himself to discuss concerns a few times this year / when I was "not great", and much to my pleasant surprise in the evening (more than once), and on a weekend, as to his credit "he wanted to understand precisely what I was dealing with / what my symptoms were and to understand my concerns".)

Hope this helps - but Gilenya is specifically listed on the HSE website as one of a number of meds that "qualifies" for a booster, so in my (non educated / unqualified) opinion you should get a booster.

link below :

Hi, please could anyone recommend a Neurology Dept or Neurologist with a reasonable waiting list?

Woke up 3 weeks ago with the right-hand side of my face, right hand and right leg all numb, hasn't improved since.

GP has referred me to a neurologist in Vincents Private but I rang them and he has a 6 month waitlist so I won't be seen until next May.

Is that normal? To be honest, I'm freaking out a bit and I don't know how I'll be able to cope with not knowing and just living like this for the next 6 months.

I'll try that, thank you for the response!

I went to St Vincents as a private patient. The neurologist was great and as soon as I was diagnosed, I was put into the public system with the same neurologist . I then moved to the North, luckily,i had a diagnosis but was still waiting 3/4 years to see my new neurologist.

Thanks, yes, the MS nurse was adamant they had sent the list to the HSE for boosters several weeks ago, but still no call or text. GP wasn't much use, speak to your consultant, we're not doing booster clinics, HSE only etc. Reading the HSE guidance where Gilenya is listed and it recommends a booster 2 months after vaccination for us, so pretty worried now that I have feck all immunity after 6 months...

Hi guys, I'm wondering if anyone here has ever used a private neurologist and if they found it better?

I'm in the south east (which is fairly terrible in general concerning health care) and I'm getting nothing of value from talking to my neurologist. I'll be explaining for ages why I'd want to try private care if I give the full story but basically I was half-diagnosed in 2015. The doctor said that I probably had MS after I'd lost vision due optic neuritis and gave two options: take the medication in case I have it and it could help slow progression or, not take the medication because I may have no reason to need it. I chose to gamble on not taking the meds until it was clear that I had MS. I've seen this guy 4 times since 2015 and each time he gives me totally contradictory info. I had MRIs in 2015 and 2017 which were fine according to him and I haven't had a symptom since 2015. Been waiting almost 4 years for a follow up MRI and demanded a private referral for it at my last appointment because I'm sick of sitting in limbo. That was two months ago and I called the radiology department at the private hospital I asked to be referred to yesterday and they dont have record of referral. I worked at this hospital in a department next to radiology so I know the secretary well. She said they'd have called to book an appointment within two weeks of getting a referral.

Even if I get bad news, I just want a straight answer from a doctor that doesn't seem rushed to kick you out the door. Is going private any better? At this stage I'm thinking of going up North.