MS in all its glory

byhookorbycrook

Steroids don't stop relapses, just help shorten them, could you be at the tail end of a relapse, impacting on balance etc?

discobeaker

No relapses,that i know off,was a little bit meh over xmas but its a stressful time for everyone. I was in hospital on Jan 3rd to meet the team that are gonna help "fix" me and the professor said to put me on IV for 5 days before i start on copaxone (im starting Jan 28th) so i started the IV last monday and finished up on Friday.

Was talking to the copaxone nurse today and i asked if i should be feeling dizzy and stuff after the IV. She said that im probably just on the come down from the steroids. I had 1000 mgs a day for 5 days and im now on 60mg oral steroids so its probably just my body adjusting to all the medication.

ash23

I know the first dose of IV steroids I had back in September I was fine during and after. But the last dose I had just before Christmas, I really felt brutal. Having said that I was mid-relapse and I had just been diagnosed. Add the stress of Christmas to the mix and I'm pretty sure I felt awful because of all that and not just the steroids.

The to-ing and fro-ing to the hospital will take it out of you anyway. Add to that everything else and you're bound to feel a bit crap.

On the plus side, I am starting month 2 of Copaxone tomorrow and it's going well.

discobeaker

Thanks for the reply Ash

Im all ready to go on the copaxone,im looking forward to starting it and getting back to some "normality"

think i will call the MS nurse tomorrow and just double check if i should be feeling like this but ive looked about online and some people have said that it can be pretty normal to feel crappy after the IV. Having that much medication put into you and then the come down from it all,add to that,the lack of sleep from the steroids keeping me awake for nearly a week and then the travelling to hospital and pushing myself. Im sure all will be ok

byhookorbycrook

Lack of sleep really hits you hard with MS, but check with nursey anyhow. If you have VHI, you could ring their nurseline thingy.

discobeaker

Yeah will call the MS nurse tomorrow. She gave me her number and said if i need anything then just give her a buzz so will get onto that first thing in the morning. Yeah,lack of sleep has really knocked me for 6 over the last week aswell the coldness hasnt been helping ive found but im sure all will be fine in the next few days

Thanks for the replies Its really appreciated

Shtanto

If that MS nurse is Nadia Macken out in Tallaght Hospital you're talking about, ask her about LDN (and also Eoghan says hi)

sadie06

Hi all,

I read this thread with interest, but I'm afraid I'm not in a position to contribute in any meaningful way.

I had posted before about my symptoms (tingling feet, legs, hands and scalp, numb foot, occasional numb lips and slurred speech etc) and visit to the neurologist, so I just thought I'd give an update and see if anyone has been down a similar path to diagnosis as I have.

My neuro was pleased with my physical examination last September, but on the basis of my symptoms, asked for an MRI of the brain, upper and mid spine, bloods, and nerve conduction/EMG testing.

I saw him again in December, and the results showed that there were some lesions on my brain, but he is 'fairly confident' that these are related to (either the cause of, or caused by) my childhood epilepsy, and said he would not expect to see a clear brain MRI in somebody that has my history.

The nerve conduction test/EMG showed severe muscle wastage and nerve damage (palsy) in my left foot, and to a lesser extent in my right foot.

Some bloods were also slightly elevated and he has asked for them to be redone.

He was again pleased with my physical examination on the day but the last 2 minutes of the appointment were not fun!

My symptoms point towards a condition called HNPP and at that point I had never heard of it. Apparently it is sometimes misdiagnosed as MS and vice versa. It can be a relatively mild condition that comes and goes, or it can progress steadily and become debilitating quite quickly. As I have had symptoms consistently since last May, I'm worried that if I have it, my type may be the latter.


Anyway, my Neuro has put off diagnosis (genetic screening) for 6 months (now 5). I'm not sure why. His thinking was we would wait to see if my foot makes any progress in that time and test for HNPP in 6 months. If I develop any new symptoms in that time however, I'll have a LP to test for MS.


I know this is ridiculously long, and I am somewhat of an intruder, but here are my concerns: I'm concerned that the lesions on my brain may not be anything to do with epilepsy, and I'm concerned that the worry of still not knowing for another 5 months will cause me continued stress, which can't be good.


Part of me hopes that I have MS, as I already have two children, and there is a 50% chance of them having HNPP. I am very confused....


Did anyone have this condition mentioned at all on their path to diagnosis?

ElleEm

Hiya Sadie!

I have no experience or knowldege of HNPP or epilepsy but I just wanted to send loads of positive thoughts your way.
You must be so confused, and the idea of waiting longer must be scary.
The doctors know what they are doing though, and I'm sure they don't want to be scaring you unnecessarily or mistreating you, so waiting must be the best option.
I don't know anything about HNPP, but I know MS flares up from stress. It can't do any harm to try to find ways to manage that better. There are loads of things from meditation to massage that may help keep you calm over the coming months.

I hope you get your answer soon.

discobeaker

Hi all

Dunno if anyone seen this or is interested but on the late late show on friday there was a guy talking about getting diagnosed with MS. If you go 1 hour and 8 mins into the video you can hear his story. He has ran 2 marathons since he was diagnosed.

http://www.rte.ie/player/ie/show/10103669/

On my news,nearly finishing the oral steroids after the IV steroids and im starting on Copaxone on Monday morning so im looking forward to getting started and getting life back on track

outnumbered82

Just watched the clip good to see someone newly diagnosed come out the other side with such a strong outlook, just shows its not all doom and gloom.

Getting a scan done to see why my leg is seizing up when I'm walking. Got more info on the new tablet would have to come off Rebif for a month before I could start taking the tablet.

Would this bring on a relapse?

coughdrops

Hi Outnumbered- I asked about relapses as I am considering coming off Copaxone later this year to try for a baby. They want me off it a month before starting TTC, and I was a bit concerned that I could be off it ages before getting pregnant, and relapsing all over the shop. I was told that I'd have a built-up protection from taking the meds, so I should be ok for a few months off it. I'm not a doctor, but perhaps it's the same with Rebif?

Discobeaker- good luck on Monday. Any questions, feel free to ask or PM me.


Watched that interview last Friday night, and have since started following Conor on Twitter.

Worried 27

Hello everyone hope you are all well!

Sorry I've not been posting lately! Discobeaker I'm really glad to hear you are finally getting started on your treatment I hope it all goes well for you and you start feeling a bit more like your normal self in no time!

I've watched the late late show and it is a great inspirational story to show you ms is not the end!

I've been a bit down as of late and I suppose feeling sorry for myself! I had a relaps over Christmas and I think in my head I thought once I was on treatment that all would be well but I'm starting to realise its not that straight forward! I guess it is all very new to me and I've a lot to learn still!

My best wishes to everyone x

ElleEm

@Worried, I don't think you ever stop learning from MS. I find that sometimes when I'm well, I completely overdo it, then get completely depressed when fatigue gets me and I have to spend days on the couch. I know that it's gonna happen, but nothing prepares you for the flare ups and fatigue. It's like you have to budget how much of yourself (mentally and physically) you give to a situation, so that you'll still be able to function afterwards. I hope you start coming out of it soon x

@Discobeaker, I hope Monday goes well for you. Copaxone has been good to me for the last two years, so I hope it's good to you too x

ash23

Hi all. Having a bad day today. Have been having MS "hugs". Such a ridiculous name for it because if anyone hugged me like this I'd batter them.
Very tired and had a call from the GP who is only going to sign my medical for my driving licence for one year until we see how things go

Trying to reduce my hours in work because I'm exhausted after only being back 3 full weeks but financially I don't think I can manage it.
Oh and my ex changed the life insurance policy we had (which had serious illness cover) to a death only mortgage policy a couple of years ago so that kinda brought the mood down a bit too (understatement).

It's just been one kick in the teeth after another and I feel like taking to the bed and not moving again. Ever.

It'll pass, it's just been a bad few days.

Worried 27

Hi ash I know how you are feeling I get the ms hugs to and it's dreadful it is a crap name for it! I've been feeling the exact same since Christmas I'm dragging myself out of the bed at the moment! I'm guess I'm lucky I have a two year that makes me get up because I think if I did not have her I'd spend everyday in bed!

When it feels like everything is going against you it's hard to find motivation to do much!

Hope you start feeling better soon x

byhookorbycrook

(N0) hugs to you,they are rotten aren't they?Sorry things are so hard right now.

sadie06

ElleEm wrote: »

Hiya Sadie!

I have no experience or knowldege of HNPP or epilepsy but I just wanted to send loads of positive thoughts your way.

I hope you get your answer soon.

Thanks so much for the kind thoughts and advice ElleEm! I actually received a duplicate of a letter from my neuro to my GP today, bringing him up to date with my test results. It mentioned that if I had concerns, to contact his secretary and we would being the genetic screening forward, so I did just that. I feel better just knowing I don't have to wait 5 months!

Shtanto

Here's a rather slick website. Critical eye appreciated: http://www.worldmedassist.com/hospitals/olv-hospital-aalst-belgium/
They claim to offer CCSVI and stem cells. Smells a bit whiffy for me, but it'd be nice it were actually legit.

Knocknarea

Hi all, I am a newbie, not to MS but to this thread. I am coming up on my 1st aniversary of diagnosis, happy aniversary to me ! I have been probably living in a bit of a haze for the last year, I have a 1.5 and 3 year DD so I guess on many levels have been taken up with minding them and not really focusing on the MS. My diagnosis was really quite a roller coaster, acute optic neutritis which affected both eyes, eye doctors, hospital, MRI and six weeks later sitting with neurologist being told I have MS. A lot to take in and I think it's taken me this long to come to terms with it all but I feel I am ready to move on and start to take care of myself ! I have read through the posts and I hope I can get some invaluable support here or offer any if I can

byhookorbycrook

Hi Knocknarea,
Welcome to the gang!What treatment are you on?

Knocknarea

Thank you:) I am on betaferon since March, have a one relapse since. Not sure if I doing well on it, since the winter months getting a lot of colds, not fighting anything lots of small things. My GP not very knowledgable so I am in limbo at the moment. I didn't really get a chance to choose what drug, four were mentioned and six weeks after diagnosis the betaferon nurse rang ! Am on amatriptylaine for burning/tingling in my foot, it's the second drug Ive tried and have recently upped the dose as it doesn't seem to be working!

I have been very passive really but I really want to get a handle on my MS this year, taking major steps to eat healthy, loose weight and get active. How about you?

femur61

Hi,

Has anyone tried Gilenya yet. I have been on betaferon for 12 years now and finding injection sites more and more diffucult and still sore. If I don't take paracetamol I get really achy and tired. The only and positive plus is I have not deteriorated at all.

I did ask my neuro and he wouldn't give me some. I just find it amazing the treatment for MS here is so different than in the US. In the US they go for MRI every six months (too much hassle) and see there neuro every 4 months as well (too much hassle as well). they are much quicker to put them on oral meds as well.

Wondering are they giving them out here yet?

discobeaker

Just met with my copaxone nurse and took my first dose. Its abit stingy but im sure i will survive. Its not as bad as i thought it would be and the nurse was just lovely so she really made me feel at ease.

I think i deserve to go out and treat myself to a pie or cake or something

val444

discobeaker wrote: »

Just met with my copaxone nurse and took my first dose. Its abit stingy but im sure i will survive. Its not as bad as i thought it would be and the nurse was just lovely so she really made me feel at ease.

I think i deserve to go out and treat myself to a pie or cake or something

The night of my first Copaxone injection, I ate the biggest burger that I had ever seen.

Do you know what? It made me feel better. So go for it.

discobeaker

Haha,i plan on it but now i want a burger!!! Hmmm,well whatever i choose to treat myself too it wont even get the chance to touch the sides of my mouth cos im gonna pig out today Diet starts again tomorrow

ash23

I've gained about half a stone since diagnosis! :eek:

All over Christmas I was doing the "self pity" diet where I'm all "oh poor me, I have MS therefore I can have cake". The fact that everyone was feeding me to do something to help didn't help

I am back on the bandwagon now though and trying to eat a bit better. But there will always be cake for bad days!

Well done discobeaker on your injection bravery! And welcome to the thread Knocknarea.

Shtanto

FYI, LDN is safer than injectables, just as effective, cheaper and less toxic? Low dose naltrexone. Prove me wrong

ash23

Shtanto wrote: »

FYI, LDN is safer than injectables, just as effective, cheaper and less toxic? Low dose naltrexone. Prove me wrong

Not proven as effective though according to MS society website and it's not licenced for use in MS so therefore cost isn't covered. So not cheaper to the individual with MS.

http://www.ms-society.ie/uploads/File/Living%20with%20MS/Our%20publications/Potential%20therapies/LDN%20Info%20sheet%20March%202012.pdf

byhookorbycrook

Gilenya is available in Ireland.A number of MS-ers I know are on it, having come off Tysabri. I'd be slow to change treatment if it is working for you,to be honest. I took betaferon for a number for years, using a cold pack before and after injecting on the sites helped.
When I was on betaferon, I arranged a check up by my neuro every 6 months(Private patient-so I paid). I only started on yearly MRIs when I switched to Tysabri and now, because I am JC+ I will have an MRI every 3 months