MS in all its glory

Lone Stone · 19-09-2011 1:58am

Well my mother has ms about 11 - 12 years now but i remember her falling and stuff when i was a kid so i think she had it for a year or two before being diagnosed.

What kills me about ms is that their doesnt seem to be any thing out to stop it.
I use to try and find all kinds of treatments for her we got scammed out of a fund raising money for a stem cell treatment ( she had cow stem cells put in her) it was all over the news but me and my sis couldnt tell her, the worst part was on the news they said only a couple of people had it done around 6 i think they said but my mother was one and she never went forward how meny more oculd their have been. :mad:

Before that i found a thing called mitoxintrone took ages to get any word about it from the hospital eventually she got it done but turned out it involved steroids and she is illergic to those so it nothing happened, Helped her friend out tho his speach was very bad but after it i could hear a big difference.

So eh after that a few years later i heard about this ccsvi and told her she got obsessed with it we went for scans but i think they were the wrong scans done it privately, the hospital wouldnt talk to her about it and just kept dismissing it and brushing us off so i dunno its a hard thing to live with even if your not the one who has it.

has anyone tried ccsvi ?

val444 · 19-09-2011 8:42am

Hi all

So had my doctor's appointment. It is MS. I thought I was prepared for it, but I guess you never really are. I have been okay though, very calm considering. I do get this wave of panic every so often, but thus far have been able to push that back down.

My plan is definitely to be open and honest with people, and tell them that I have MS. Now if only I could get the words out...

I am going to meet with my manager this week and give her the heads up. I know I don't have to, but I really have felt that the secrets are harder. It will be nice not to have to watch what I say so much. Also, work pays my health insurance, so I guess the premium taking a massive jump next year would be telling...

How did ye all manage telling friends and family? Do you have to inform insurance companies immediately? For Life Assurance and Motor Insurance? What do you need to do about your driving license? Can I just wait until I need to renew it? Obviously if I ever feel like I can't drive, I won't.

Thanks all.

byhookorbycrook · 19-09-2011 5:58pm

No, nothing ever prepares you for it and just wait until the "ah sure it could be worse it could be..." crowd land on you!!!(All of whom are in the whole of their health,of course...)

Any word on starting a treatment?

Health insurance shouldn't jump.Mine is €750 per year-and my tysabri is €2,500 per month, never mind MRIs and all the rest:D:D
Driving liscence,unless you are very bad, stays until it expires, at least that's how mine was.

You need to notify your car insurance though,asap, or else they might try to weasel out of any claims, even if MS nothing to do with it. My crowd are happy with a letter from the neuro to say I'm fit to
drive, ask when you ring them.

Welcome to our exclusive little club!

val444 · 19-09-2011 6:16pm

Thanks!

I have informed the manager at work. I was careful in choosing who to tell, but deffo made the right choice. I was looking for someone to take the information, process it, and be lighthearted and appreciate my tongue in cheek humor about it. If I had chosen someone else, my worry would be that they would be overly concerned. I am not looking for a hug like!

I also let my mammy tell her sister. She knew there was something up, but not exactly what, and I really feel like Mum needs to have someone she can talk to too, Dad and I are too busy making jokes about things to be able to have a serious conversation with her.

I think my fiance is waiting for the inevitable meltdown, but I have been cheery enough thus far. I had a bit of a fight with my friend about it, which wasn't fair. I felt like she didn't care, but I dunno what exactly it is that I want from her either. I know I have the rest of my life to be telling people, but I kinda want it to be over with, so that the world knows why my left hand is stupid, and it can just sink into the collective memory.

No word on which treatment. Next neurologist appointment is not until December, but she is gonna ask the MS Nurse to talk to me about options. I have no idea what to do, but I know I deffo wanna do something.

How did ye decide? Did ye get much guidance from the neurologists?

byhookorbycrook · 19-09-2011 6:44pm

No MS nurse when I was diagnosed, not sure if there even is one now where I am. My neuro is excellent and I was very much guided by her.The thing with MS is that every single case can vary wildly,so one course may not resemble another except in name.

I make no secret whatsoever, for example some people who hadn't seen me in a good while saw the process it now takes me to get up on the horse during the summer. I think I may have shocked them somewhat as they thought I'd done my back. Actually, for a finish, I think I was nearly sorry for them, as they really weren't sure what to say:p I answer all questions honestly as much as possible, except in the very rare case of a nosy auld biddy who is just being nosy...

LegacyUser · 20-09-2011 10:42pm

byhookorbycrook wrote: »

my tysabri is €2,500 per month

you serious! :eek: wow as in thats what it costs the hospital every month, crikey! some kind of source would be good for that too if you can provide?

val444 · 22-09-2011 2:53pm

I do find it odd that I won't be choosing a medication until December. It seems a bit strange that after all the tests etc, happening so quickly, and then a definitive diagnosis being made, that I wouldn't start straight away? But then I guess the neurologist knows better than I, so I will leave that up to her!

The one thing I am finding difficult is the fatigue. Does anyone have any tips on this? I find that by about 3pm, I am practically asleep at my desk, and I liven up then again a bit in the evenings. It brings a new meaning to the idea of the 3pm slump!

trishawisha · 22-09-2011 3:15pm

Hi Val, when I got definitive diagnosis, it was like; ok well there are 4 drug options, take away info and read them all over the weekend, and ring on Monday with your decision and we'll get the ball rolling. Very fast, it took 2 weeks then for the nurse to come visit to show me how it was done.
December seems a good length of time. My neurologist said nowadays as soon as diagnosis is made they want patients to immediately begin treatment.
I didnt like how I had to decide which drug to take though. It was like ok they all have downsides, you must choose for yourself what you can put up with.
Btw I'm on copaxone
Fatigue is and was my biggest symptom, I have not found any relief only to make sure to get a good nights sleep.

val444 · 22-09-2011 3:21pm

Hi trishawisha, thanks for your response.

What exactly is the MS Nurse? What does he/she do? Do they actually call to you? I am baffled by this to be honest. The neurologist just kinda said, we will ask the MS Nurse to contact you, and I will see you in December. It has been a week, and I have not yet been contacted.

Also, when exactly is it decided that the particular set of symptoms you are experiencing require a stay in hospital, or steroids? I asked a lot of questions on Friday, when I was given the diagnosis, but my head was obviously all over the place, and I keep coming up with more things I should have asked.

Thanks!

byhookorbycrook · 22-09-2011 8:09pm

A relapse usually means a hospital stay for steroids.My relapses where when a leg refused to move in any controlled fashion. (Broke a toe on my "good" leg when left leg wouldn't move and I fell:rolleyes: )

trishawisha · 23-09-2011 9:46am

Hey Val, I was just as confused as you are only a few months ago.

Im changing to a public neurologist in Feb to CUH and Iv heard they have a couple of nurses there so also the ms nurse your neurologist may have been talking about could be to do with the hospital you are attending.

The "ms nurse" Im talking about is when you choose what medication, ex copaxone, the neurologist contacts the drug company and they organise for the nurse employed by the drug company to start you on the meds. So she/he will ring every once in a while to see how your getting on, she will also visit a few times. They are there at the end of the phone if anything goes wrong with regards injection reactions. Copaxone has around 600 patients in Ireland and for that they have 6 dedicated nurses.

I have not had a hospital stay so I dont know what would qualify a relapse and hospital stay.

MS.ing · 24-09-2011 9:50am

val444 wrote: »

What exactly is the MS Nurse? What does he/she do? Do they actually call to you? I am baffled by this to be honest. The neurologist just kinda said, we will ask the MS Nurse to contact you, and I will see you in December. It has been a week, and I have not yet been contacted.

Also, when exactly is it decided that the particular set of symptoms you are experiencing require a stay in hospital, or steroids? I asked a lot of questions on Friday, when I was given the diagnosis, but my head was obviously all over the place, and I keep coming up with more things I should have asked.

Thanks!

Think of the MS nurse as a gateway to seeing the neurologist. if you had a hospital stay after or at the time of your diagnosis then usually the MS Nurse will see you and introduce herself tell you about the meds which they advise you to consider and make your choice from. She could have been on holiday then [as mine was!] so will see you when she gets back. She is a member of the neurology department and is a nurse specialist for MS. She will be the one arranging your scan viewing results and the one to contact if you feel you are having a relapse and will sort you out and calm your worries or get the neurologist involved.

The nurse which shows you how to use the needles and tells you about her companies medication is completely seperate from the hospital and is a one off type visit to get you comfortable with injecting and answer any questions surrounding it.

LittlemsSkelly · 25-09-2011 9:06am

Hi all,
I escaped to london for a few days so apologises for the absence, such an exciting life I lead :rolleyes:
Delighted to see the thread is still going and hope everyone is well.

The car insurance issue, I still haven't told mine....big faux pas but I'll have to. Don't want some a$$hole crashing into me then blaming the fact I have MS on their incompetent driving! It's against the law to give you a higher premium unless you have modifications or the like done to you're car but it happens all the time according to my nurse so I'll be looking forward to that battle!

Whoever wanted to know about the MS nurse (there's been alot of activity here since I've been gone!) you get two. One, as some mentioned is your liaison to the neuro, the other is a nurse for whatever drug you choose to go with. I have two amazingly scary but wonderful nurses, Jackie and Martha who I absolutely adore. If my ass needs a kicking, they are more than happy to oblige. I'm on betaferon so Martha comes out to my house every month or so. It was more often when I started treatment at Christmas but I've had no reaction. So the gist of the home visits are really just to inspect injection sites, make sure you're being as clean as possible, monitor any and all skin reactions for possible signs of necrosis and just sit and have a yap and see how your doing.

Val, sorry about the DX. But welcome to the MS club, in the very least the stories and people should be giving you hope for the future. With regards to the meds, your best bet is to spend some time trolling the internet. Find the good points and bad to each of the injections and make yourself a list. There was only one that I was adamant I wouldn't go on after doing the research. Everyone is different though, you can read 10 medical journals stating benefits/drawbacks to each, read 100 peoples stories about what its like for them, then your completely different. For what its worth, I chose Betaferon because it's been on the market the longest, very thin needle, minimal flu like symptoms, auto injector compatible and doesn't need to be refrigerated. Downside is some people do get very bad skin reactions and need hospitalisation (very rare), you need to make it yourself but its so simple I could do it with my eyes closed at this rate, and needs to be injected every second day. Two ibuprofen will avoid any flu like symptoms for me though, I don't bother with the paracetamol aswel.

The relapse issue, I have been hospitalised once for IV steroids and tests ( yeay Lumbar Puncture and MRI...:rolleyes:), the second time was for the optic neuritis and I thought they would keep me in, but the Mater neurology suite have and outpatient infusion centre so I got my IV steroids while avoiding the crazy aul ones on the wards.

For fatigue, I just drink bucket loads of coffee. My neuro mentioned provigil, like legal speed, to combat fatigue but never heard anything more about it. So you could try mentioning that to your neuro but apparently its only used for people who have narcolespy and they don't want this drug going off script so maybe that's why. Couldn't hurt to ask though...

Why are all my post like essays.....?!:D

The Dagda · 26-09-2011 6:00pm

Hi, sorry if this is off topic but has anyone here ever called in serious illness cover on MS?

bnt · 01-10-2011 7:30pm

Here's some interesting MS research news:

A dietary supplement similar to glucosamine appears to suppress the damaging autoimmune response seen in multiple sclerosis (MS) attacks, raising hopes of a new metabolic therapy for autoimmune diseases. Researchers from the University of California, Irvine (UCI) in the US found that oral N-acetylglucosamine (GlcNAc) stopped abnormal T-cells from growing and working properly: in people with MS, these abnormal cells incorrectly tell the immune system to destroy the tissue that insulates the nerves.

Sounds like it would be a bit cheaper than Tysabri ...

mikom · 01-10-2011 7:42pm

Quick query, and I don't want anyone incriminating themselves if they are posting with anything like their real name.
Have any of the MS sufferers here ( or ones you know) tried cannabis to ease their symptoms.
I have met two MS sufferers who swore by it as an aid to sleep, preventing restless legs and the like.
There is one other MS sufferer I know who found no relief using it.

Cannabis has been proven, for the first time, to be an effective treatment for the symptoms of multiple sclerosis (MS).

http://news.bbc.co.uk/2/hi/health/662254.stm

bizmark · 02-10-2011 6:51am

27 year old guy i was diagnosed last year been a very rough 8 years though before hand this will be long..

Iv basically been hold up in my home for the better part of a decade due to fears and hang ups primarily revolving around a skin
condition i have which appeared on my face when i was a teenager 18 or so i was already suffering from some confidence and personal issues and that basically caused me to retreat into myself i chose to be a fool and hide take the easy option for a number of years my life basically stopped my world was a couple of small rooms and a pc screen..
Maybe 2 years ago i started to go out late at night or early in the morning for cycles and then more "normal" times around midday in the country side i was scared of it but i kept going i still couldn't deal with people though i would panic and the idea of going in town or voluntarily putting myself in any kind of social environment terrified me still i was exercising and getting used to being out on my own terms eventually i was cycling 15-20 miles a day early in the morning lost weight became fitter and happy
.. then MS hit me just after my 26th birthday (1 month after) i lost the use of my arm and leg on the right side it took me 3 weeks of constant prodding by my family and 1 very special friend to eventually get me to work up the courage to deal with the hospital what needed to be done 7 days of the most invasive horrible things that could happen to someone who was scared of social interaction and suffering from "self image" issues could endure
Prodding and injections and lumbar puncture followed by MRIs people walking in and out having to deal... but i did deal with it and the hospital set me up with a little help that was a year ago now i can go in town jump on a bus go shopping generally function on my own started a fas course recently simple one but i wanted to see if i could deal with it last week of a 5 week course coming up and i loved it was nice to be around a group of people again none of my fears came to pass.

Guess what that long rambling storie means is that even though the last few years cumulating in a serious illness that will now also be a perminate feature to endure on top of the other "problems" iv been suffering from which haven't and of course cant be fixed they don't ultimately matter its all a state of mind you can decide that your life is awful or over or nothing will improve or that worse case is all you can look forward to or you can decide right
this is what i have these are the mistakes iv made these are my stupid decisions but you can fix nearly anything and you can deal with pretty much anything amusingly sometimes it needs a kick in the ass and some important people to make you understand that.

Now even though i cant cycle 15 miles any more i have an upper limit of 3 miles walking (not bad really) i have a near perminate and annoying weakness on my right side and the ms drugs i was put on made my life hell for 9 stright months till i was taken off them recently even with all that i Guess in a way ms is my Saviour strange as it sounds.

tbh health isnt physical strength its not perfect skin its not the ablity to walk 27 miles a day its all in your mind we all need to remember that

byhookorbycrook · 02-10-2011 2:14pm

mikom wrote: »

Quick query, and I don't want anyone incriminating themselves if they are posting with anything like their real name.
Have any of the MS sufferers here ( or ones you know) tried cannabis to ease their symptoms.
I have met two MS sufferers who swore by it as an aid to sleep, preventing restless legs and the like.
There is one other MS sufferer I know who found no relief using it.

http://news.bbc.co.uk/2/hi/health/662254.stm

Haven't done myself, but a few friends have, split 50/50 between helping/hindering. If the HSE approve the Savitex, I presume users couldn't drive while taking it?I'd die if I couldn't drive!

MS.ing · 02-10-2011 7:01pm

mikom wrote: »

Quick query, and I don't want anyone incriminating themselves if they are posting with anything like their real name.
Have any of the MS sufferers here ( or ones you know) tried cannabis to ease their symptoms.
I have met two MS sufferers who swore by it as an aid to sleep, preventing restless legs and the like.
There is one other MS sufferer I know who found no relief using it.

http://news.bbc.co.uk/2/hi/health/662254.stm

this annoys me and others, you dont suffer MS, its a disease, suffering is a state of mind and your perception. some People with MS do suffer too, but so do people with depression and cancer and most other LTI's
I HAVE MS, and I do suffer, but Im not an MS sufferer!!

mikom · 02-10-2011 7:15pm

byhookorbycrook wrote: »

Haven't done myself, but a few friends have, split 50/50 between helping/hindering. If the HSE approve the Savitex, I presume users couldn't drive while taking it?I'd die if I couldn't drive!

The info sheet on Sativex.

This medication can impair mental and physical abilities. You should avoid driving, operating heavy machinery, or engaging in activities that require mental alertness when using this medication.

MS.ing wrote: »

this annoys me and others, you dont suffer MS, its a disease, suffering is a state of mind and your perception. some People with MS do suffer too, but so do people with depression and cancer and most other LTI's
I HAVE MS, and I do suffer, but Im not an MS sufferer!!

Fair enough.
Far be it for me to argue semantics.
*Backs out of thread slowly*

byhookorbycrook · 02-10-2011 8:52pm

Lads/lassies, haven't we enough to contend with without getting bogged down in words. I always say "I was diagnosed with MS" rather than "I have MS" but so what?

LittlemsSkelly · 03-10-2011 6:50pm

Jaysus....

Peace and harmony lads....

Sure the face people give when they hear you have MS is far worse...I think this one is closest to it

>

Come now, play nice

Aurora Borealis · 03-10-2011 9:19pm

Can I ask if anyone has tried or has any thoughts on Low Dose Naltrexone or LDN. My neuro thinks it's quack stuff but I know a few who has tried it and who swear by it. They find it brill for fatigue too, amongst other things.

bizmark · 04-10-2011 1:38pm

anyone go long distence traveling with this ? iv been considering a month or two in oz and was wondering how anyone else got on specialy with the traveling

Liloooney · 08-10-2011 11:38pm

Hi guys, i'm a first year radiographer and as part of our assessment this semester we are putting together a patient information leaflet regarding different sorts of scans necessary for successful diagnosis of multiple sclerosis. i was wondering if i could get some feed back from you guys about your personal response to the scans and maybe some tips for future patients who will go through the same diagnostic process as you's. your help with be so much appreciated!

byhookorbycrook · 09-10-2011 7:30pm

As you know there is no one test to confirm MS. I was diagnosed through symptoms and MRIs. My big fear was that I'd have to have a lumbar puncture,after hearing scare stories.
As someone on Tysabri I have MRIs each year,my one thing to say here is to tell people to close their eyes before they go into the tunnel as if you are anyway at all scared of enclosed places it's not the place to be

Also, ensure that if the person is brought in and out to inject contrast, be sure to give them the panic button on the way back in!!

val444 · 10-10-2011 8:15am

Hi,

I was diagnosed through MRI, VEP and Lumbar Puncture. To be honest, MRI didn't bother me one bit. I would however suggest that the radiographer provide updates on how much time has passed while the patient is in the MRI machine. I was in there for 37 minutes, and tried to work out how much time was passing by how many songs I had heard. It would have been helpful to know!

Thanks.

MS.ing · 10-10-2011 6:22pm

Physical exam from Neuro, MRI and LP. Oh and when in the MRI the top of the macine is about 8 inches from your nose! :eek: its grand though..

Aurora Borealis · 11-10-2011 6:47pm

I would second Val444's comment regarding time updates. For me they are of major importance as I get very claustrophobic in the tube and the countdown helps calm my breathing. I have found some radiographers very dismissive when asked to give these updates. The experience is stressful enough for some as is. Maybe bear that in mind too.

LegacyUser · 11-10-2011 7:01pm

LittlemsSkelly wrote: »

This won't be very uplifting for the menfolk so look away now......
If you were young, I think 19 - 35 getting diagnosed, if your initial symptoms were visual (i.e double vision, ON, nystagmus) or had vertigo, had a low amount of lesions on initial MRI or few or no changes on subsequent MRI's and you're female, you're long term prognosis is excellent. You just need to hold on to that frame of mind. Not every person with MS will develop ON, similarly not everyone will develop weakness.

Ok, you've made my heart skip a thousand beats. I was DX in that age group and female, and the other bits. How is my long term prognosis excellent?

2008 was my diagnosis (September), had another scan 18 months (ish) later and no changes. I also quit my Betaferon over a year ago. Hope I don't jinx myself now, but I haven't had any relapses, bar a numbish hand last Christmas. I did get what I thought was vertigo in March, but on researching it before going to the GP I found my symtoms were more BPPV like and I was right. If I hadn't gone armed with that info, my GP might have just given me the oral steriods for MS/vertigo. I'd only get dizzy when I tilted my head a certain direction.

MS in all its glory

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