MS in all its glory

pbarr

Ya funding is going to be an issue all right. Probably thants why there's not much info about about it at the moment
Hope it's all sorted out soon

val444

Hi all. Long time no post. I had a baby a few weeks ago so can honestly say MS has been the least of my worries for a while! I had a difficult enough pregnancy and am currently having the dreaded post baby relapse. It's not the end of the world but I am a little nervous of being the one at home with the tiny baby while my eyesight is haywire and I can't feel my hands properly etc.! Halfway through a course of iv steroids, hence the 5am posting. Sleep is but a distant memory. It would be the one week the baby decided to sleep through as well!!!

Anyway I know there were others on this thread who were trying to conceive post diagnosis so I'd anyone wants to ask me anything at all, feel free. I won't lie, it was damn hard but I wouldn't change a thing. Bubs is my best friend and I can't imagine life without her now!

ash23

Huge congrats on the new arrival Val. I love teeny babies!

Pregnancy and new babies are but a distant memory for me as my little woman is 11 now! I'm only 31 but decided I'm not having any more mainly because of the MS. I'm too much of a chicken to risk the relapse. Happy with my one and my boyfriend is the same as he also has a little girl from a previous relationship. It made me sad initially to make the choice but I'm good with it now.

But that's just me and my choice and not for everyone. And I'd probably think differently if I hadn't already had a child and if I hadn't met someone who doesn't want kids.....

It's a very personal thing really.

But best wishes and I hope the relapse doesn't last too long and that yourself and baby are happy and healthy.

Salmotrutta

Congrats Val! Hope the steropids kick in and you feel back to normal soon!

I'm seeing my neuro tomorrow, probably the formal diagnosis, get results of MRI and discuss treatment. I had a look at the MRI myself and think I can see lesions on the brain and one on spine Last year's MRI just showed one lesion on brain so he could only diagnose CIS then... latest relapse has kinda put the kibosh on that.
Think he wants to put me on Tysabri, which I'm happy to try, just hoping the JC test is good, been reading about high/low titers etc.
What else do newly diagnosed MSers have to do? Car insurance, etc?

Now if only my hands would start to improve...

byhookorbycrook

Great news, Val, many congrats !

trishawisha

Congrats val!!!!! Hopefully the worst is over with and steroids will get everything under control
Best of luck with bubs, am really happy for you , was thinking about you the other day, am delighted to hear the good news

Salmotrutta

Well, turns out I'm JC+ with a high titer, so Tysabri is ruled out for now, going with Gilenya first. IV steroids again next week and start on Gilenya next month. My neuro seems to have a liking for aggressive early treatment, which I'm happy about. No messing about with interferon/less effective/first line treatments, straight to the good stuff seems to be his attitude. Maybe because he says the MS seems to be quite active. One new lesion on brain MRI but the main activity seems to be in upper spine...

Welcome to my new life

val444

Thanks guys! The steroids did a wonderful job and I am pretty much back to myself now, thank goodness. Back to neuro on Friday to decide on a new form of treatment. Copaxone wasn't as effective as it could have been so Tysabri or Gilenya next.

I am pretty sure this is my one and only baby, it was hard, even besides the MS, I am still fresh from the sleepless nights and baffled as to how anyone does it more than once! We have been blessed with such a placid child, long may that continue!

embee

Hi folks,

Just realised I haven't posted since I joined this thread. So to recap, diagnosed in April, initially my MRI's were lesion free but have had a spinal and brain lesion detected in more recent MRI's. Have been in for the three doses of steroids, in April and again in June as I was having major difficulty walking. First course of steroids didn't work at all aside from giving me desperate heartburn. Second dose was more effective. Started on Copaxone in June and it's going grand, minimal side effects so far, though the daily injections are annoying. Am seeing the neurologist in Beaumont Wednesday week, what should I expect? I went to a private neurologist to basically get diagnosed and start treatment, but this is my first appointment in the public system. I feel a lot better in terms of my mobility now but am extraordinarily fatigued at times and have persistently numb hands, feet, right leg and right side of torso. Have been to a few coffee mornings and information sessions held by local MS branch which has been really helpful.

Ye are talking about babies.... I have an 8 year old daughter but I really, really want her to have a sibling. I am 33 now so time is somewhat of the essence but it means stopping my Copaxone for some time before conception and I'd be worried I'd relapse. More questions I suppose for my neurologist!

Hope ye are all doing well x

ash23

embee wrote: »

Hi folks,

Just realised I haven't posted since I joined this thread. So to recap, diagnosed in April, initially my MRI's were lesion free but have had a spinal and brain lesion detected in more recent MRI's. Have been in for the three doses of steroids, in April and again in June as I was having major difficulty walking. First course of steroids didn't work at all aside from giving me desperate heartburn. Second dose was more effective. Started on Copaxone in June and it's going grand, minimal side effects so far, though the daily injections are annoying. Am seeing the neurologist in Beaumont Wednesday week, what should I expect? I went to a private neurologist to basically get diagnosed and start treatment, but this is my first appointment in the public system. I feel a lot better in terms of my mobility now but am extraordinarily fatigued at times and have persistently numb hands, feet, right leg and right side of torso. Have been to a few coffee mornings and information sessions held by local MS branch which has been really helpful.

Ye are talking about babies.... I have an 8 year old daughter but I really, really want her to have a sibling. I am 33 now so time is somewhat of the essence but it means stopping my Copaxone for some time before conception and I'd be worried I'd relapse. More questions I suppose for my neurologist!

Hope ye are all doing well x

Hi Embee,
Just saw this now.
I know when I went back for my first review the registrar did a neuro exam and took history of symptoms since I'd started on Copaxone. I'd had a few relapses on Copaxone and because of that, the consultant came in to see me and ordered a brain MRI and called me back in a month.
Went back after the MRI and I had new active brain lesions so he decided that Copaxone wasn't working well enough for me. It had reduced the severity of my symptoms but not the relapses or the MS activity.

Had blood tests and was given the choice of Tysabri and Gilenya. Decided on Gilenya and have been on it for nearly a year without a single relapse. So 6 months after I started on Gilenya I had another neuro appointment. No relapses so I just saw the registrar, neuro exam, asked questions about symptoms etc and as there was no change or worsening of symptoms and no relapses I was told to carry on as I was and come back in 6 months.

So what you can expect will depend on how you've been since your last appointment really.

I'm due back in October so they might do an MRI as it's been a year since my last one but I'm pretty well so maybe not.

JohnMearsheimer

Hi all,

I went into hospital for 2 weeks in back in April. The left side of my body went a bit funny on me. I lost full control and co-ordination of that side of my body. I was put on steroids for 3 days. I had a spinal tap and MRI scans as well. I wasn't told I had suspected MS until I was literally packing up my things to leave hospital. It was a hammer blow to say the least and it took the wind out of my sails a bit just as I was leaving the hospital.

I went back to the neurologist in May. In the meantime my body went back to normal. She told me the tests they did on the fluid they took from my spine were negative but in her opinion I had MS.

I'm going back for another MRI scan and to meet with the neurologist in September. I've been feeling fine since I left the hospital. I'm still a bit up in a heap about the whole thing.

byhookorbycrook

It is a shock, John, no doubt about it. When you meet the neuro ask about starting on one of the disease modifying drugs if they are as sure as they can be that it is MS. Early drug dosing can slow down MS or even stop it in its tracks for a while at the very least.

JohnMearsheimer

byhookorbycrook wrote: »

It is a shock, John, no doubt about it. When you meet the neuro ask about starting on one of the disease modifying drugs if they are as sure as they can be that it is MS. Early drug dosing can slow down MS or even stop it in its tracks for a while at the very least.

The last time I was at the neurologist she mentioned that she will put me on mediation. I don't have an official diagnosis yet. Even though I tested negative for MS the subsequent conversation I had with the neurologist followed along the lines like I did have MS. I may get a firm diagnosis in September after my next MRIs and I guess we will have a discussion on the medication side of things.

byhookorbycrook

You can't really test positive or negative for MS, as there is no one test that will say yea or nay. If neuro is saying it's likely, then it probably is.Do you take omega oils and vit d-if not might be an idea to start -neither will harm and may be a good help. If you want to pm me at any time , feel free, have been through a lot of it -diagnosed in 2001 and have done the rounds of various meds.

JohnMearsheimer

byhookorbycrook wrote: »

You can't really test positive or negative for MS, as there is no one test that will say yea or nay. If neuro is saying it's likely, then it probably is.Do you take omega oils and vit d-if not might be an idea to start -neither will harm and may be a good help. If you want to pm me at any time , feel free, have been through a lot of it -diagnosed in 2001 and have done the rounds of various meds.

I don't really understand too much about the tests they did on the fluid they took from me. I think they were testing for some kind of proteins in the fluid which would be a good indicator of MS. My neurologist said the proteins weren't present in the fluid they took from me but this would be the case with roughly 10% of people with MS and it was her opinion that I was in this 10%. That's what I took from talking to the neurologist anyway. Regardless, I've accepted that I probably do have it.

Thanks for the tips and support. I've been taking vitamin B12 and vitamin D since June and I've been eating blueberries as well. They're apparently good for the nervous system. I didn't know about the omega oils so I'll pick some up.

byhookorbycrook

Omegas help protect the myelin, it's thought. There are lots of cracked diets, a good balanced diet with lots of unprocessed food will be good for anyone. I never had a LP to check the spinal fluids, was diagnosed from MRIs.

ash23

As far as I know for an MS diagnosis there has to be two relapses and lesions in two different parts of the body.
If you've only had one relapse it's possible it was a one off but more than likely another relapse will happen and a diagnosis will be made unfortunately. I think that is why the neurologist is preparing you for diagnosis without officially diagnosing you.
Have you had a brain and full spine mri to check for lesions?

byhookorbycrook

I had just the one relapse. I had to have a second to be put on a dmd, but that was 2001.

embee

Jesus isn't MS just great craic altogether?

After the past 10 days where I have slept and slept with no relief of my tiredness, now I am wide awake at 2.21 am with a leg that just won't quit twitching and going into spasms. Just when you think you've gotten your head around it, it throws you a curveball. "Here, I know your tired and all that, but here's a hopping, twitching leg for you to deal with, and of course a side order of insomnia!"

MS - the gift that keeps on giving

pbarr

embee wrote: »

Jesus isn't MS just great craic altogether?

After the past 10 days where I have slept and slept with no relief of my tiredness, now I am wide awake at 2.21 am with a leg that just won't quit twitching and going into spasms. Just when you think you've gotten your head around it, it throws you a curveball. "Here, I know your tired and all that, but here's a hopping, twitching leg for you to deal with, and of course a side order of insomnia!"

MS - the gift that keeps on giving

Are you taking anything for the twitching.

embee

pbarr wrote: »

Are you taking anything for the twitching.

No, I'm not, because it was just that one night and the next day it had stopped.... are there meds you can take if that sort of thing becomes frequent? I am so clueless about MS really, real life gets in the way of me educating myself about my stupid MS.

I have had a severe headache for the past two days, does that count as a "new" symptom? I mean, everyone in the world has had a headache at some point. This headache is extreme though - light hurting my eyes, entire head feels like its about to explode, can almost feel my brain rubbing off my skull! I dunno have I a headache because of MS, or just a typical stress headache from real life. I had migraines as a child, which led to a diagnosis of epilepsy at age 12. I have been seizure free and off meds since the age of 19 but part of me wonders if it's all connected.

pbarr

embee wrote: »

No, I'm not, because it was just that one night and the next day it had stopped.... are there meds you can take if that sort of thing becomes frequent? I am so clueless about MS really, real life gets in the way of me educating myself about my stupid MS.

I have had a severe headache for the past two days, does that count as a "new" symptom? I mean, everyone in the world has had a headache at some point. This headache is extreme though - light hurting my eyes, entire head feels like its about to explode, can almost feel my brain rubbing off my skull! I dunno have I a headache because of MS, or just a typical stress headache from real life. I had migraines as a child, which led to a diagnosis of epilepsy at age 12. I have been seizure free and off meds since the age of 19 but part of me wonders if it's all connected.

I'm not sure about the headaches because it's primary progressive ms that I have and if don't get headaches. Apart from the lack of mobility the biggest problem I have is leg twitches at night. My GP prescribed Baclofen which is a muscle relaxant. That's not too bad at least it gets me to sleep in a short time but it would wear off around 2.30 in the morning and I would wake up and my leg would start twitching. Then I would have to stand out for a couple of minutes and that would get rid of it for an hour or two
My neuro recently put me on Naboline which is stronger and better and gives me a better nights sleep.

outnumbered82

When should you tell a new partner you have MS
Started seeing a new guy first guy that hasn't been there since the start of my MS and I'm wondering when should I tell him.
My MS Is under control I have no symptoms for past few months so haven't been thinking about it, but as the relationship is getting more serious I don't know when I should tell him or if I should. I know he won't care but still feel like the longer I leave it the harder it will be to tell him.
Is not telling him lying about myself or is just
I'm weird about it new friends from past few years don't know about it and ppl I work with don't know either. Only long time friends and family know everything

fergal.b

outnumbered82 wrote: »

When should you tell a new partner you have MS
Started seeing a new guy first guy that hasn't been there since the start of my MS and I'm wondering when should I tell him.
My MS Is under control I have no symptoms for past few months so haven't been thinking about it, but as the relationship is getting more serious I don't know when I should tell him or if I should. I know he won't care but still feel like the longer I leave it the harder it will be to tell him.
Is not telling him lying about myself or is just
I'm weird about it new friends from past few years don't know about it and ppl I work with don't know either. Only long time friends and family know everything

Tell him straight away it's only fair if he cares enough about you it will make no difference but if he finds out you have been holding out on him it could be a bigger problem and you could loose him for not being honest in the first place plus if you are ever out and about and something happens he will have some idea whats going on.
Best of luck.




.

ash23

I told my now boyfriend after he asked to schedule our third date. I knew we were getting on really well and wanted to see each other again so I told him so that he had all the info. I felt it was fair.

We've been together a year now.

The guy I was seeing at the time of diagnosis broke up with me a couple of weeks after I was diagnosed.

Ms won't be for everyone so the sooner the better in my opinion.

Agenda

Hi all, first time to post. Have being working my way through the whole thread. I was diagnoided in May with PPMS after being misdiagnosed with fibro for ten years.

My nuero is talking about trying me on teciferdia ( I think that's how it spelt), is on one here on it and could let me know there experience.

Thanks

Closov

fergal.b wrote: »

Tell him straight away it's only fair if he cares enough about you it will make no difference but if he finds out you have been holding out on him it could be a bigger problem and you could loose him for not being honest in the first place plus if you are ever out and about and something happens he will have some idea whats going on.
Best of luck.
.

I'd agree to tell sooner than later. It's going to be different for every person and every relationship, but I suppose the question to keep asking yourself is, if it was the other way round, would you expect to be told by now?

Don't expect them to properly understand though. It's hard enough for someone with ms to understand their own disease!

Good luck

Closov

Agenda wrote: »

Hi all, first time to post. Have being working my way through the whole thread. I was diagnoided in May with PPMS after being misdiagnosed with fibro for ten years.

My nuero is talking about trying me on teciferdia ( I think that's how it spelt), is on one here on it and could let me know there experience.

Thanks

It takes a while to get through the whole thread! Sorry about the diagnosis :-/

I've been on Tecfidera since July. I had an hour or two of flushing on the first and second days and the same again a week later when I went to the full dose (usually you go half dose for the first week). I was always careful to take it on a full stomach, and ive even chanced a few doses on a very light stomach lately. I'd have to say it is great for me compared with Copaxone, bit everyone's different. I suppose we'll find out in six months to a year if it is working.

If you get comfort from reading about living with ppms, a blog I really enjoy is 'wheelchair kamkazi'.

pbarr

Closov wrote: »

It takes a while to get through the whole thread! Sorry about the diagnosis :-/

I've been on Tecfidera since July. I had an hour or two of flushing on the first and second days and the same again a week later when I went to the full dose (usually you go half dose for the first week). I was always careful to take it on a full stomach, and ive even chanced a few doses on a very light stomach lately. I'd have to say it is great for me compared with Copaxone, bit everyone's different. I suppose we'll find out in six months to a year if it is working.

If you get comfort from reading about living with ppms, a blog I really enjoy is 'wheelchair kamkazi'.

I have PPMS was diagnosed at the end of 2009 and now have very bad mobility but I have never heard of Tecfidera . How does it help you?

Closov

pbarr wrote: »

I have PPMS was diagnosed at the end of 2009 and now have very bad mobility but I have never heard of Tecfidera . How does it help you?

Sorry pbarr, it's a disease modifying drug for RRMS, just like the Interferons and Copaxone. Some say it is one of the first to show positive results for slowing down reduction in mobility. I don't know why Agenda was prescribed it for PPMS, maybe in the hope that it will help. I may have PPMS myself (too early to tell), so I don't know if it is going to do anything for me.

It's a fairly new treatment for MS in Ireland, although they have been prescribing it in Germany for about 20 years for people with Psoriasis (also a CNS disease, believe it or not), as far as I know. It's not yet available on Long Term Illness, but can be availed of on "Named Patient Basis".