Last reply 1 year ago
An oldie

I seem to be the oldest having MS twenty years and I’m still going and never had an ms drug in those was 20yrs don’t want to be down beat it doesn’t get any easier, my neurologist told me it was all in my mind and just kept giving pain killers I am now in a wheelchair my legs don’t work so not all in the mind.

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highlander
1 year ago

Hi and welcome 😀
I’m not too far behind you but I hobble and chair at the moment.
But getting ever more reliant on the chair…..
Don’t you just love doctors?
Where are you from?


vixen
1 year ago

Hello @mariedicken, there are a fair few on here who have been diagnosed a long time. Did you choose not to have any medications at all or were they never available for you? Glad that you e found Shift x


emma_lowe
1 year ago

Yeah, I’ve been diagnosed 22 years. firstly RR now SP, in wheelchair most of time, all of the time at moment as I’ve broken my ankle. surprised not done it before really.
I had Rebif for about 17 years, Fingolimod 3yrs. Now nothing.
for those new to the world of MS. yes it is a sod. but we MSers are fighters. you’ll have your down days but you will also have your – ‘ i’m just gonna laugh it off ‘ days.
Treatments are progressing all the time.
just keep asking your consultant if there’s anything new or trials you can go on.
Find yourself an MS buddy who knows what it’s like and fly.
Sportability is a great way of keeping or finding challenges.


rogersouthall
1 year ago

mariedicken, surprisingly many do not understand what we go through, I write a monthly blog to try and inform none suffers exactly what it is like, take a read and please share, good luck
http://www.wholesorts.com


mariedicken
1 year ago

Hello vixen, I have never been offered I’ve asked for them but he refuses every time, I am now in a wheelchair and they’ve given me a indoor power chair what I really need an outdoor one and one that folds up my husband struggles pushing it and getting the ordinary one in an out the car so my life is stuck indoors
Marie


vixen
1 year ago

Hello again @mariedicken, it sounds like seein another doctor might inject a bit of energy into your situation, somebody perhaps who is a bit more connected to the world of MS and current treatements and research? Push for it and good luck!


mariedicken
1 year ago

Hello highlander, I was born in Glasgow but have lived in Warwickshire 46yrs but still go to Glasgow when I can, lost my brother last year but keep in touch with my nieces and sister in law my niece is always coming down and my daughter and husband take her out and she loves it


merfield
1 year ago

@mariedicken, please can you give us more detail on your profile? – cheers 😊xx


kateft
1 year ago

I was diagnosed in 1997. For the first 18 years I was not on ant medication (except for steroids during relapses). I started on Gilenya in 2015 after a bad relapse where I was not able to swallow at all and would actually vomit if I tried. Not fun. I think the gilenya has slowed things down. Still feel like rubbish though🤪😬


itsmewithms
1 year ago

Just been in the group just over a week and one of the things I find fascinating is how different all of our treatments and doctors have been. I was sent straight off to a neurologist with my gait issue (had optic neuritis when pregnant 3 years before) and right away had an MRI and was diagnosed. My MRI was read quickly and my treatment options reviewed. Chose Copaxone and started right in with that. I don’t understand the delay and confusion with diagnosis and treatment unless the protocols are really that different around the globe. I’m in the US and was diagnosed in 2005. I’m frustrated that I could have been diagnosed years earlier when I had strange nerve issues that were explained as excessive stretching and working out doing kick boxing workouts…the earlier treatment is started I understand the more it is shut down. I’d be very frustrated with the delays I hear in some of these stories…


criswell
1 year ago

I was diagnosed in 1983 But I think there are some here that were dxed even before that.


criswell
1 year ago

I think the only treatments I heard about in the 80s were bee stings and hyperbaric oxygen therapy,lol.


lanea
1 year ago

It only took two months to get my results. Started with optic neuroitis and they sent me to an eye specialist. The next week I was having blood work done. The next week MRIs and spinal tap. Every thing said MS. The neuro put me on tecfidera and I couldn’t take the side effects then tried copaxon, that almost killed me. Now too scared to try anything else.


stumbler
1 year ago

@itsmewithms , in the UK, we have our free NHS, funded by tax payments.

It’s over-used, stretched and under-funded. It’s not unusual to have to wait for months to see a Neuro. And then, Doctors have their hands tied regarding what they can and can’t do.

Each country is different and each has its benefits and drawbacks…….

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