MS in all its glory

JohnMearsheimer

I'm still having speech problems. The MS nurse said they are going to try and push forward my next MRI and consultation with my neurologist. It was due at the end of March anyway.

PTC71

byhookorbycrook, Can I ask where you got your splint for your TMJD please? Does it work? I am finding it very difficult to find a dentist who actually knows very much about TMJD.

byhookorbycrook

I was referred to a guy in Dublin. He was very well informed and most helpful. http://drdermotcanavan.ie/aboutus.html Try to be seen by himself. Not especially cheap, but the relief is worth any money and some of the money can be recouped through tax.

PTC71

Thank you byhookorbycrook. Did your splint cover your front teeth? I would probably need to wear one 24/7.

byhookorbycrook

My splint goes on my lower teeth. According to the man himself, I "clench" at Olympic level. A lot of help is in awareness, I didn't realise I was setting my jaw during the day, biting my nails, having a dry mouth due to amitriptyline all contributed.

embee

So I eventually went to the GP, Who told me I would need steroids in light of the deterioration in my eyesight. Went to a&e inOLOL (their AMAU was completely packed). A&E was jumping, sat from 7pm to 2am before being seen. Got on a trolley and was left to sleep overnight, they didn't want to give me the steroids or I'd be awake the whole night. I was awake the whole night, surrounded by other people coughing and spluttering. No privacy whatsoever. On Wednesday morning I was one of 37 people waiting on a trolley in a&e OLOL. They sent me to see the ophthalmologist who decided I needed to be seen by a retinal specialist in the mater. I had my first steroids at two pm that day then was promptly put into a taxi to the mater. Was there until half eight waiting to be seen, then I find out that OLOL never bothered their arsesl to book me a taxi home, they assumed I'd sort myself out. Needless to say I was stressed beyond all recognition. I rang the Lourdes and they grudgingly sent out a new taxi, which took an hour and a half to come from Drogheda. I got home at midnight. The while experience was horribly stressful, only chink of light was that they organised for the CIT to come out to my house to do the second two doses of steroids. That wasn't without its problems as the nurse got here before the courier did with the drugs so there were delays galore. But glad I was able to get my steroids at home, only hope if I need them in the future again I can use this scheme.

Then, I went to a pre-employment occ health screening in Friday. Had to tell them about the current relapse. They were heavily implying that I might want to seriously rethink my career as midwifery is so stressful. Feel deflated and pissed off, have a midwifery interview for a permanent position in the morning but I can't summon the motivation as I feel like this MS is just gonna throw up road blocks.

Big C

are you newly diagnosed (past 2 to 3 yrs)

MS ireland asking for info from newly diagnosed.

http://www.ms-society.ie/research/blogs/1779

byhookorbycrook

embee wrote: »

Then, I went to a pre-employment occ health screening in Friday. Had to tell them about the current relapse. They were heavily implying that I might want to seriously rethink my career as midwifery is so stressful. Feel deflated and pissed off, have a midwifery interview for a permanent position in the morning but I can't summon the motivation as I feel like this MS is just gonna throw up road blocks.

Not up to them to make that call, hope you did the interview. MS is highly variable and no-one can say how they will be down the line, much less OCC Health.

embee

Have any of ye had an extremely sore throat post IV steroids? Throat pure raw but I have no temp or other symptoms. Throat feels like it's got a big sharp glass lump in it. Happened after the last dose of steroids too

JohnMearsheimer

embee wrote: »

Have any of ye had an extremely sore throat post IV steroids? Throat pure raw but I have no temp or other symptoms. Throat feels like it's got a big sharp glass lump in it. Happened after the last dose of steroids too

I've only had one dose of steroids over three days but I never suffered from a sore throat from it. Maybe people who've been through it a few more times than me have had sore throats.

embee

I needn't have worried too much about the Occupational Health. I did the interview for the national panel on Monday. This morning I got a phone call of a formal offer of employment, starting the week after next on the labour ward!

eimsRV

Congrats Embee!

Salmotrutta

Some promising news this week about a breakthrough on a possible new treatment made by scientists in Trinity, led by Professor Luke O'Neill. I can't post links but there was an article on Tuesday in the Irish Times, and a good interview with Luke on the Pat Kenny show yesterday on Newstalk - you can listen back on newstalk.ie, it's the last segment (~50 mins in) on Part 2 and the first few mins of Part 3. Luke was a lecturer I had in college and he's a brilliant guy, who I don't think is prone to exaggeration or hype, so this really looks promising for a future therapy.

byhookorbycrook

About 10 years out, but progress.

embee

So MS is kicking my ass right now. Legs are weak, left one feels hot all the time, right one won't lift off the ground much when walking. Due to start my new job on Wednesday and I feel like I'm not gonna be able for it. Can't drive properly either as foot won't lift off pedals quickly enough. Have only just had a course of steroids so that's out of the question but I feel pretty wretched. Why can't it just f off and leave me alone? I hate this condition.

byhookorbycrook

Are you relapsing, do you think? Be careful driving, if so as you may be "medically unfit."

embee

Feels like a relapse, only had a relapse two weeks ago. I had a bad flu after getting out of hospital, these leg symptoms only started when I was sick with flu. Dunno what the hell to do because I can't have steroids twice in two weeks.

byhookorbycrook

embee wrote: »

Feels like a relapse, only had a relapse two weeks ago. I had a bad flu after getting out of hospital, these leg symptoms only started when I was sick with flu. Dunno what the hell to do because I can't have steroids twice in two weeks.

It's most likely the flu that is making you worse . Any infection, even a mild UTI worsens symptoms for MS-ers. Contact your Neuro nurse if you like but I'm 99.99% it is the flu.

discobeaker

Has anyone been put on a tablet called Amitriptyline for their MS???

My doctor in the Mater put me on it afew days ago after an ECG and was wondering if anyone has tried it. Ive taken it for 3 days now and ive been like a zombie,sleeping 15 hours+,shakes,walking weird,no appetite etc. Was just wondering if anyone had any experiences with this medication. I know its meant to be a light anti depressant and apparently helps with pain and spasms but so far im hating it

byhookorbycrook

Yes, I take it, 50 mg at night. It took a bit of tweaking to get the timing right, too early and I was waking up sore and early. Too late and I was zonked the next day. I was put on it as I was up to the max on gabapentin, but was told only to take it at night.

OUTDOORLASS

Hi Discobeaker, I.m from the Crohns forum... I was put on it about 2 weeks ago for nerve pain caused by lot of surgery for Crohns. My GP said to introduce it slowly. 10mgs few times a week, and work up. I started it on the mid term when I could get a lot of sleep. Aside from the sleepiness, I cant say that I have noticed anything else weird. But it is early days yet........

ash23

Had MRI results yesterday. They seemed happy enough but I thought I had a lot of lesions. Just wondering how many other people have.

I've about 5 or 6 in my brain and 2 on my spine. All are old and inactive. They think that there's one starting but are happy enough that the MS isn't very active at the moment.

ElleEm

ash23 wrote: »

Had MRI results yesterday. They seemed happy enough but I thought I had a lot of lesions. Just wondering how many other people have.

I've about 5 or 6 in my brain and 2 on my spine. All are old and inactive. They think that there's one starting but are happy enough that the MS isn't very active at the moment.

I had 3 very small ones at diagnosis, then had "a few more" at an MRI last year ( 3.5 years in). They wouldn't commit to a number but said that it was as expected and still quite low. Only thinking now about how it is annoying I didn't get a direct answer. I'm gonna harass them at my next appointment for a number!

ash23

ElleEm wrote: »

I had 3 very small ones at diagnosis, then had "a few more" at an MRI last year ( 3.5 years in). They wouldn't commit to a number but said that it was as expected and still quite low. Only thinking now about how it is annoying I didn't get a direct answer. I'm gonna harass them at my next appointment for a number!

He was showing me the MRI and there seemed to be at least one on every segment which I'm pretty sure wasn't the case last year....but then again I've been symptom free more or less for over a year and they seem happy so I should probably not fret too much. They're also all very small ones.

I suppose it's easy when I've very few symptoms to forget that I have it or that it's there, doing it's damage. But when I see it on the MRI it becomes impossible to forget about it.

Salmotrutta

ash23 wrote: »

He was showing me the MRI and there seemed to be at least one on every segment which I'm pretty sure wasn't the case last year....but then again I've been symptom free more or less for over a year and they seem happy so I should probably not fret too much. They're also all very small ones.

I suppose it's easy when I've very few symptoms to forget that I have it or that it's there, doing it's damage. But when I see it on the MRI it becomes impossible to forget about it.

You're on Gilenya Ash IIRC? I'm only on it a few months but my last MRI I was told "no new lesions, existing ones reduced in size" so I was hoping that would continue. You have me worried now if you're getting more while on Gilenya...

ash23

Salmotrutta wrote: »

You're on Gilenya Ash IIRC? I'm only on it a few months but my last MRI I was told "no new lesions, existing ones reduced in size" so I was hoping that would continue. You have me worried now if you're getting more while on Gilenya...

I am on Gilenya.

I've only one active lesion and no relapses so they're content that the treatment is working. It's not a cure and perhaps that's where I went wrong, thinking that it would completely stop the MS. And no relapses kind of backed that up so I was a bit thrown to find that it's still there, doing what it's doing albeit at a reduced rate.

Blinder

Still all new to this but I think that all the Ms drugs ( with possible exception of lemtrada) have a x% reduction of relapse rates but none of them reduce it by 100% . I remember seeing a table online somewhere of the effective reduction rates of the MS drugs. Will try to dig it out.
Off the top of my head, I think Gilenya had about a 60% reduction rate. I only remember for sure that it stated that Rebif had a 30% reduction rate .

Blinder

ash23 wrote: »

Had MRI results yesterday. They seemed happy enough but I thought I had a lot of lesions. Just wondering how many other people have.

He found at least 12 on my brain MRI. Didn't get a spinal MRI but he said based on the reflexes ( I think that's what he said) that it was likely that there was some on my spine too, but since I was going private and paying for it just while waiting for by public appointment, he said any other MRI can wait for now.

byhookorbycrook

No idea of the number of lesions I have ,but there are some in my c-spine and in my brain.There's not enough data on Lemtrada as is is only recently started to be used more widely,but it has had good results. All of the meds only claim to slow down MS, not stop it, At present , Tysabri is the most effective at present at around 70%
"
The CARE-MS II study, annual relapse rate at two years for patients on Lemtrada was 0.26 compared to 0.52 for those on Rebif, representing a 49 percent lower risk of relapses. Likewise, after two years, 65 percent of those on Lemtrada remained relapse-free compared to 47 percent on Rebif, which was also significant." But as I said, not enough people on Lemtrada to compare properly.

embee

The fun never ends with MS. Took my copaxone last night as normal, almost immediately got dizzy, heart racing, face and throat swollen up. Puked for about half an hour solid then spent the night in bed with horrendous leg tremors and spasms. Rang the MS nurse today, I've to stop taking it as she said it sounds like an anaphylactic reaction. Been taking it for 8 months and then suddenly reacting to it? So now am off treatment until I see neurologist on 11th March.