MS in all its glory

discobeaker

Just my 2 cents on the meetings,about 6 months after I was diagnosed I was looking at some videos on ms Ireland YouTube channel and found out about a meet up group set up by Emma Rogan who works or at least did work for ms Ireland. They have meetings in the ifi in temple bar one Saturday every month but sadly I haven't been in months due to my dad passing away and then the delightful relapse after all the stress so the times may have changed.

I found the meetings really helpful because I could talk to people who know exactly how I felt where as my friends didn't really understand. I found the meetings at the link below

http://www.meetup.com/Dublin-Multiple-Sclerosis-Group/

Hope that's some help to anyone interested

Blinder

Never knew about that meetup group @discobeaker. Thanks for that

discobeaker

Blinder wrote: »

Never knew about that meetup group @discobeaker. Thanks for that

No problem blinder,glad I could be of help. If you need any info just drop me a pm anytime

Lollipops23

That's the one I went to! Lovely group, very mixed demographic-wise and very welcoming.

Just wasn't for me!

embee

So I am almost at the end of my eight week tysabri washout. Just got word from the MS nurse today that I am still jc negative and I will be going ahead with admission for Lemtrada on Monday or Tuesday next week! Hurrah! Can't come quick enough, am on oral steroids but despite them I remain very symptomatic. Can't wait to get started, feel like the law of averages should give me some sort of decent results, no other drugs have worked so I must be due some good fortune!

Gremlinertia

Wishing you the best Embee

Lollipops23

Sending good vibes your way embee!! All the best!

Blinder

Best of luck next week Embee

vmb

Best of luck Embee.

This is my first post in this thread despite I´ve read almost all pages.

I was diagnosed 2 years ago, started with avonex and it didn´t work, then moved to tecfidera and after 6 months I have 5 new lesions (and about 3 mild relapses)

Now I can choose between Tysabry and Lemtrada. I am waiting for the JC results but I think I´ll go with Lemtrada.

As far as I read, both of them are more effective than tecfidera though they have serious risks (PLM, tyroid problems, cancer...)

I´ve suffered 7 - 8 relapses in just two years. They haven´t been too strong, but this rhythm is too bad for my future

What would you choose between Ty and Lemtrada?

outnumbered82

How long do you have to be episode free to be in full remission. I haven't had a proper episode in 5 years so I was just wondering if I'm in remission?

Blinder

outnumbered82 wrote: »

How long do you have to be episode free to be in full remission. I haven't had a proper episode in 5 years so I was just wondering if I'm in remission?

I'm not sure if you are asking if your MS is gone. Unfortunately not. You still have MS. It is just in the remitting stage. This varies as to how long it lasts.

Hope it continues for you. Keep on doing what you are doing.

Blinder

Embee. hope the treatment went well.

Blinder

vmb wrote: »

What would you choose between Ty and Lemtrada?

Personally, I'd choose Lemtrada, because it's not a continuous treatment ( i.e. monthly)
You just have to weight up the pro's and con's of each treatment and choose the best on for you.

byhookorbycrook

Blinder wrote: »

Personally, I'd choose Lemtrada, because it's not a continuous treatment ( i.e. monthly)
You just have to weight up the pro's and con's of each treatment and choose the best on for you.

Lemtrada is only newly available here. According to our Neuro , vhi etc will pay for two rounds and probably no more. I am in a few lemtrada groups where members in England are on their 3rd and 4th, so I would want to know I could have more than the two if needed. She also says that having Lemtrada may mean you can't have Tysabri after. All of the drugs have pretty big possible side effects- Tysabri carries a risk of PML . Lemtrada can mean a clotting issue ( ITP) and Grave's disease. These are currently the two most proven effective drugs available at present ,which is why people take them anyhow.

Panorama did a programme recently on stem cell which is relatively new but neglected to show how tough the treatment is and more or less sold it as a cure - which it's not. Tysabri was being touted in a similar fashion at the start and then PML was discovered as a side effect . Both Lemtrada and Tysabri was only given if you meet specific criteria . Read up on all your options, talk to your Neuro and see what best suits you.

embee

Think long and hard about going on Lemtrada. I have just finished round one in Beaumont hospital two days ago. I feel like absolute muck, unbelievable tiredness, persistent headaches, pain in joints all over, very stiff muscles, no appetite, some nausea..... Like, it's not a cake walk! I was on tysabri prior to Lemtrada and it is definitely not as hard on the system as Lemtrada. Only reason I'm on Lemtrada is that I've run out of treatment options, if I had a choice I'd still be on tysabri but, as usual, my MS decided to be an aggro wee bitch and kick off.

byhookorbycrook

I agree Embee. It's not the easy option. That's why people need to be really , really au fait with options and side effects. I know a lady who chose an oral drug over Tysabri as t would be more convient. The oral drug gave her constant stomach upset - as in needed to be by the loo for 2 hours after each one and even then had " accidents " we all need to choose what is the best treatment option, with help from our Neuro team, but we have to inform ourselves too.

embee

My neurologist said that my MS is very aggressive and that oral medications were not going to cut the mustard. Wish I had gone straight to infusion treatment instead of wasting a year on copaxone and tecfidera. I'm still feeling like pure crap after the Lemtrada but it's early days, only got the fifth infusion five days ago so in the grand scheme of things it's no time at all. Rang the MS nurse yesterday and apparently it's all normal so o just have to ride the storm!

vmb

Hi Embed, hoping that you will recover very soon!

I also think that it is better to suffer 2 or 3 dreadful weeks than to be attacked without stop by the f**** MS.

Obviously, a powerful treatment has also big risks, but what I only know if that if I don't take measures my MS is going to be VERY complicated.

Lollipops23

Have had an odd prickling pain (just a flash now and then) in one of my feet for the last 2 weeks. It's the first time I've had symptoms in my lower half, really hope it's not a sign things are moving that way

byhookorbycrook

If it is a new symptom, prolonged as this seems to be, keep a note of it.

failinis

Not MS but I have had bloods sent off for genetic tests for 2 other neurological conditions so in the "twiddling my thumbs" stage of waiting, and just touch wood its all clear.

My MRI of brain/spine shows all 100% okay (despite scoliosis and some minor spinal things) so it ruled out lesions/cysts like the 2 previous neurologists had suggested.
:rolleyes: You would think I should be buzzing it was clear!
MRI did find a cyst on my ovary which explains a lot - trying to get referred today by a GP to get that looked ASAP so I guess its a distraction.

Neurologist I seen on Monday said due to my symptoms its likely genetic - and I am seeing a geneticist next week.
The neuro's were "meant" to find some lesion or small problem so I would not need to see the genetic people but seems its not working the way I wanted.

I am apprehensive, I don't want to go next week for them to say "yeah it looks genetic" cause I know, and I am just waiting for bloods now which may be months.

Hope its okay to post in here, I did not see any other threads for neurological issues.

Blinder

Hope the geneticist visit went ok fallinis

failinis

Blinder wrote: »

Hope the geneticist visit went ok fallinis

Thanks Blinder.

I think I spoke about the genetics visit in a thread somewhere but clearly not here.

Mixed sort of "review" from that, the doctor was a lovely man and its always a bonus to have someone you trust in that role.

He said he can not say for sure that I do NOT have an inherited ataxia , and that I do just need to wait for the blood results to come.
However he said since I have had symptoms of ataxia since I was small (very minor though getting worse) he said if I had the most common type of this illness that he would expect to see in a wheelchair by the time I was my age now of 20.
He said clearly I am not in a wheel chair, and yes certain ataxias start to develop when a person is 15 onwards but that I have a longer history of balance issues.
So he said its unlikely but not able to say for sure.
So touch wood that the inherited ataxias come back negative.

Me and a sibling have be misdiagnosed about 5 years ago with a connective tissue disorder, that diagnosis was dropped about 3 years ago as they tested brothers blood twice and it came back negative for a certain thing and we were left alone.
My symptoms have deteriorated and a private geneticist I seen in Feb said that he think me and my sibling have a new mutation.

This was suggested by my new genetics doctor, he said it IS a connective tissue disorder based on how its effected me, but that it does not fit into any known condition. He took some blood to test for all known CT disorders but said he bets that will be negative.
He said if thats negative then we are looking at a new condition and he has signed me up for a new genome research project thats coming to Northern Ireland in 2017, I just give some blood/skin samples along with my parents and they do the rest. Its impossible to map every single gene the dr said, but he said this new thing covers way way more than anything before it, huge jumps in the past 5 years and if me and bro have a mutation they should find it

He took photos of me and my hands/feet and asked if it could be used for teaching purposes, great I am a medical curio ha :rolleyes:

Importantly, he said the neurologists wanted to see a neurological problem because that is what they specialise in (and he said he is bias on genes).
But that no matter what, I have a CT disorder regardless of why I have some balance issues.
He said it could explain my ataxia (its only present in my lower limbs).
My long bones are longer than they should be (my arm span is 2inches longer than my height), because CT is fecked in me. I had horrible growth spurts as a child and left unable to walk for a week or so - the GP back then said "the bones just grew way faster than her muscles it should catch up".
They did catch up, problem is CT apparently recognises damage nerves and protects them etc - and if my nerves were stretched/damaged in growth spurts then it would remained damaged. I also have bad raynuards on top of this causing more damage.
I said it sound uncommon, he said in CT it is common, but that most doctors dont really know about CT disorders and he really thinks thats what has happened to me. If my ataxia bloods are negative, his theory is most likely.


I don't know if I "like" the thought of it being a new to genetics condition - because they don't know how this will effect me.
I was warned on Wednesday to not get pregnant (I am gay so thats unlikely and no plans to :P ) because CT women get complications and they really don't know how mine effects me.

I can't help but feel like giving everyone waiting for blood results like ataxia disorders or MS a hug because its soul destroying while waiting.
Some simple test result could determine the rest of someones life.

Sorry this post kind of does not fit in here at all - but I will post here again when I get the ataxia results and hope I have good news of being in the all clear.
Then its the up hill struggle of maybe have some unknown condition - I have to make things hard don't I

Thanks x

byhookorbycrook

Post here away, I say, because it may overlap with diagnosis issues for some people here.. It's great to be something unusual isn't it (not)
Fingers crossed for you

Lollipops23

Yesterday was my birthday. I know my coworkers think I'm quiet this morning because of a hangover, and don't I wish that was the truth. You know, like a normal 29 year old woman might be.

But nope, it's the fatigue. That bone crushing, soul destroying fatigue. I slept for 8 hours, but feel like I haven't slept for 3 days.

ash23

Belated happy birthday Lollipops.

The fatigue is terrible. I'm relatively lucky that I don't have it bad all the time but it's my main symptom, well, the one that affects my life the most.

My father was giving out about me the other day, how lazy I am lol. He's a d*ck anyway but I won't lie, it hurt because I know a lot of people think that. Because I don't have any obvious symptoms people seem to forget or not think about the MS. Don't get me wrong, I'm glad I don't have any obvious difficulties but invisible symptoms bring their own judgements.

I reduced my hours to part time and I make sure not to over extend myself but it doesn't always work. And when I go places with people and have to nap before going out or leave early knowing if I don't I'll be wiped for a week, I do feel like people think I'm being lazy.

And now and then I'll be silly and push myself to do something and regret it for a week!!

Ah the joys!

byhookorbycrook

There is nothing like MS fatigue, non MS-ers think they know what it is, but haven't a clue!

Lollipops23

Got a letter from the Mater calling me for my first annual MRI in oct. Anybody have any idea how long I'll wait before getting my results? Am I brought in a few weeks later for the results?

byhookorbycrook

I'd ask at the MRI, it varies.

If it is NOT good news, we'd usually get called to an appointment pretty sharpish
A letter is usually about a week to ten days if there isn't an issue. Our neuro is at each Tysabri infusion anyhow so never a long wait.

ash23

I get told at one six month appointment to get it done and have it a few weeks later.

I ring the MS nurse and leave her a voicemail telling her I've had it done and she usually calls back a few days later, tells me the neuro will have a look and she'll be in touch if she needs to be. So far I've not heard back from her and get the "official" results and the next 6 month appointment.

To be fair, all of mine have stayed the same for the last three years so that is probably why. I would hope that if there was a change I'd hear about it sooner. System probably depends on where you're attending but I've never gotten a letter form my neurologist about an MRI result.