MS in all its glory

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.

Liloooney · 11-10-2011 11:28pm

Thanks so much everyone! this is so helpful, and i'll definitly keep the countdown issue in mind when i go on my placement in january! thanks again, and keep the comments rolling if you can. Thanks.

val444 · 13-10-2011 3:00pm

Hi all

Has anyone here tried Provigil? Is it easy to have it prescribed? Does it need to be prescribed by a neurologist, or can your GP recommend it?

It has been mentioned to me once or twice, and I can't decide if it is a good idea or not. I am so tired, all the time, can barely stay awake at work in the afternoons. Obviously, I was only diagnosed with MS recently, so I always thought everyone found things this difficult! I usually battle through, but since my diagnosis, I dunno am I giving in to it more? Now that I know I have legitimate fatigue? If that make any sense?

trishawisha · 13-10-2011 3:15pm

Hey all, this thread is great

Anyone know anything about, or try kinesiology?
Im very sceptical, but my dads workmate knows someone who found it really helped. I spoke to the therapist yesterday, who said after seeing him a woman with MS has been cured(wtf?)
Massive scam or may ease symptoms?

Like Val fatigue is a big problem for me, dont know anything about Provigil though.

byhookorbycrook · 13-10-2011 4:51pm

trishawisha wrote: »

Hey all, this thread is great
I spoke to the therapist yesterday, who said after seeing him a woman with MS has been cured(wtf?)
Massive scam or may ease symptoms?

Smells like that dr in Clare who was "curing" cancer. Will the "therapist" give you the name and no. of this woman so you can verify this?I'd imagine if somone really had cured MS we'd have heard by now:(

By the way, pre diagnosis, I went to a "faith healer" who told me I had seven bones out in my back (physically impossible) took my €50 per session for 8 sessions and told me he had cured me. Oh how I laughed-not.

MS.ing · 13-10-2011 6:08pm

val444 wrote: »

Hi all

Has anyone here tried Provigil? Is it easy to have it prescribed? Does it need to be prescribed by a neurologist, or can your GP recommend it?

It has been mentioned to me once or twice, and I can't decide if it is a good idea or not. I am so tired, all the time, can barely stay awake at work in the afternoons. Obviously, I was only diagnosed with MS recently, so I always thought everyone found things this difficult! I usually battle through, but since my diagnosis, I dunno am I giving in to it more? Now that I know I have legitimate fatigue? If that make any sense?

MS =/= to fatigue! Just cause you have MS doesnt mean you automatically get fatigue, fatigue comes from disability usually, from reading your few posts I gedt the impression you werent disabled by MS in anyway [strength, balance that kind of way] I wouldnt say its the MS, your just tired? especially since you seem to be saying it has always been like that.

trishawisha · 13-10-2011 7:26pm

byhookorbycrook wrote: »

Smells like that dr in Clare who was "curing" cancer. Will the "therapist" give you the name and no. of this woman so you can verify this?I'd imagine if somone really had cured MS we'd have heard by now:(

By the way, pre diagnosis, I went to a "faith healer" who told me I had seven bones out in my back (physically impossible) took my €50 per session for 8 sessions and told me he had cured me. Oh how I laughed-not.

The therapist told me he would give me the womans number, after checking with her that its ok. My parents are mad for me to give it a go, dont have the money to do it right now, so they insisted they would pay. So Im going along next tuesday €60 for one hour.
I have a feeling 1st appointment will be assessing and then in order to make any difference you'll need about 10 sessions(€600) :eek:
Im willing to go along to the first one, but am extremely wary. Ill report back to what after.

val444 · 13-10-2011 8:33pm

Um, I know I am only learning about this, and I am open to correction, but my neurologist seemed fairly certain that I was suffering from what she called primary fatigue. Apparently secondary fatigue is caused by symptoms, but primary fatigue is simply caused by "the result of the disease process itself, and is caused by demyelination in the central nervous system."

Also I am pretty sure that falling asleep at ridiculous times when sleeping normally at night, is classed as more than just tired? I dunno, I have several symptoms at the moment, and sure they are tiring, but the fatigue I am talking about is more sleepiness?

bizmark · 14-10-2011 12:34pm

well i decided to go on a holiday off fir a few weeks next month half way across the planet im not currently on anything so im a little scared of something happening but hey thats what travel insurance is for ..

First hoilday by myself ms can kiss my ass

sillymare82 · 14-10-2011 4:32pm

I'm new to this so hope im doing it right, its great to fine a thread where people are talking about recent experiences. My sister has recently being diagnosed with RRMS and is currently on Rebif injections 3 times a week she is also getting vitamin B12 injections weekly at the moment. Currently she is getting on well with the injections and since January 2011 she hasnt had any episodes thank god, her last was optic neuritis, which she fully recovered from thankfully!
She gets very tired easily and has a job where she is continuously on her feet so that doesnt help but she is dealing with the tiredness. Her biggest problem at the moment are hot flushes which she is experiencing frequently, has anyone encountered these and if so is there anything which can help them?
Also are there vitamins which she should be taking, what about diet and exercise? She hasnt been given any information on either...
Would be very grateful for any information or shared experiences which you may have

byhookorbycrook · 14-10-2011 10:21pm

I take vit D and Udo's oil capsules( got them on my LTI book.)I have a thing called a "chillow" that goes into the pillow slip for night times. The sweats may be caused by the rebif,so taking paracetemol helped me with the flu-like symptoms when I was on the betaferon.

sillymare82 · 14-10-2011 10:57pm

byhookorbycrook wrote: »

I take vit D and Udo's oil capsules( got them on my LTI book.)I have a thing called a "chillow" that goes into the pillow slip for night times. The sweats may be caused by the rebif,so taking paracetemol helped me with the flu-like symptoms when I was on the betaferon.

Thanks byhookorbycrook, she takes paracetamol before taking the rebif n hasn't had flu symptoms so far thankfully, injects just before bed! The flushes started before the injections so seem to b a symptom of the MS rather than the meds we think! Will investigate the "chillow", tks again

outnumbered82 · 30-10-2011 12:27am

I have been recently diagnosed with Ms and have been taking Rebif, the first month was fine no side effects but then as the dose went up i stared getting chills for hours during the night nothing i would do would make me warm, thank god that has stopped now i am getting head aches and nausea the next day after i take the Rebif. Is this normal everyone i ask who doesnt have Ms doesnt seem to understand and thinks it must be normal if its happening.
I really want to stop taking the Rebif as its making me feel worse, i was tired b4 taking it but now im tired all the time and feel sick, do these side effects stop?

outnumbered82 · 30-10-2011 12:27am

I have been recently diagnosed with Ms and have been taking Rebif, the first month was fine no side effects but then as the dose went up i stared getting chills for hours during the night nothing i would do would make me warm, thank god that has stopped now i am getting head aches and nausea the next day after i take the Rebif. Is this normal everyone i ask who doesnt have Ms doesnt seem to understand and thinks it must be normal if its happening.
I really want to stop taking the Rebif as its making me feel worse, i was tired b4 taking it but now im tired all the time and feel sick, do these side effects stop?

trishawisha · 30-10-2011 10:32pm

Hi outnumbered82, bad luck about the side effects.
I would talk to your neurologist to see if this type of side effect is something you are expected to live with or maybe you could try something else.
Im on copaxone and even though its a massive pain in the ass injecting every day, there are no side effects(besides the injection sites going hivey-not all the time though)
Iv been on it since April, havent been on any others so can't compare.
I hope it gets better for you

outnumbered82 · 31-10-2011 1:36am

Thanks for the suggestion, when i spoke with my nurse she said it was normal and to take pain killers and keep a note of how im feelng after since its only a few months. Hoping they will pass soon so i can back to normal

trishawisha · 02-11-2011 4:09am

Hi all I just wanted to come back and relay about the "newly diagnosed" seminar in cork city a few weeks back.

It was me and my very gracious boyfriend - he was not looking forward to spending the day with strangers!. There was about 30 people there, half of which were diagnosed recently.

We spent time talking altogether for a while, then we were split up into two rooms. All the MSers in one, all the partners in another.
We were then broken into groups and given topics to talk about, all relating to our diagnosis. This for me was great as the two guys I was with were as heartbroken as I was about the diagnosis, and the uncertainty about the future. It was great to actually talk to real people about it, as I dont know anyone personally who has it. We were then brought back together and our answers were compared. It was very interesting to able to look at things from partners viewpoint, I probably had not being doing that alot since my diagnosis.

Then after lunch Dr Sweeney Consultant Neurologist in CUH came along and gave a very informative talk, and he spoke about the possibility of there being up to 11 drug possibilities within the next 5 years!

After that came a couple who had attended the newly diagnosed seminar 3 years before to relay their experiences, which was very sweet and funny and made you think things aren't so bad actually.

Most of the day was very informal,just when Dr Sweeney was talking that it was serious. Everyone looked "normal" and there was no scary wheelchairs there that I had been worrying about. We came away from the day really happy we went. I would highly recommend anyone whos just been diagnosed and feeling a bit lost to contact the MS society. There is no push to get you to attend the meetings only if you want to but there are really good things going on like the newly diagnosed seminars. While there I was signed up for physiotherapy, for 6 weeks, something I would not have thought to do for myself.

Just on a side note I went to a Kineseologist 2 weeks ago and have yet to make up my mind. He reckons I dont have MS at all, but have mercury poisoning from fillings. I dont really believe in all that but there are alot of people who believe in mercury poisoning....so I am still undecided. He gave me your ones number who he said he "cured" but Im suspicious about it as she could be his sister or something and I wouldnt have a clue.
Ok that is all thanks for reading

Fighting Irish · 02-11-2011 2:48pm

http://www.doctoroz.com/videos/montels-own-procedure

Montel Williams shares his experience of undergoing an experimental procedure(CCSVI) for multiple sclerosis

outnumbered82 · 26-11-2011 2:41am

Does anyone else get pain in there feet. I am getting pains in my right foot, i cant put it flat down at the moment, i seem to be walking on my tippy toes on my right foot. the pain is going from my arch down to my heel. this happened b4 a few months ago and i had it check out by a "foot doctor" and she said it wasnt my arches. Sorry for the long winded question but was wondering if ms and the pain in my foot could be related?

At the moment i feel like i cant tell the difference between stand alone pain and ms pain!!

byhookorbycrook · 26-11-2011 2:04pm

yes, I have a lot of pain in my legs and feet. Wonder if your leg muscles are in spasm and that's why you can't put your foot down flat?Talk to your gp or neuro.Gentle stretching like touching your toes may help loosen you up.

outnumbered82 · 26-11-2011 10:32pm

if my leg was in spasam would it hurt. my pain started in my back then the next day it was in my foot. today was the worst day i had foot pain nausea and head aches hoping it will all pass soon

byhookorbycrook · 26-11-2011 11:33pm

outnumbered82 wrote: »

if my leg was in spasam would it hurt. my pain started in my back then the next day it was in my foot. today was the worst day i had foot pain nausea and head aches hoping it will all pass soon

Ah poor you. yes, spasm hurts!!

outnumbered82 · 27-11-2011 4:50pm

Was able to go for a walk today so it must be getting better

LittlemsSkelly · 30-11-2011 8:31am

Hello all, I am truly amazed this thread is still going....delighted but amazed. So I am officially in my first relapse a year to the day after receiving my dx. Although I have to say it has a nice little cyclic feel to it, like now the first year is over, everything else can begin if you know what I mean :rolleyes: Or maybe I have just gone completely mad which is the more likely possibility.....

The Optic Neuritis is back with gusto, have the oh so stupidly titled 'MS Hug' in my mid riff and leg which feels like a baby kicking??? Honestly, who hugs a leg? Should be called the MS 'we're gonna screw with you the day before you have to go in for a meeting with your dissertation supervisor', but I digress....;) So, neuro freaked, off all my meds in the New Year, another MRI and an entirely new treatment plan. But aside from the eye I feel absolutely fine so I don't know if they're just shot-gunning treatment because I'm oh so loveable and cute, or because I might be that 2 in 10 that has the severe form of the disease. Doubtful given the symptoms, but always a possibility I suppose, I'll have to wait for the MRI.
So, how is everyone doing? All the MS'ers doing well I hope?

byhookorbycrook · 30-11-2011 5:38pm

Treatment is essential, keep the thing at bay.I regret not going on Tysabri sooner.
As to "hugs", people look at me strangely as I explain that I am digging my knuckles hard into my ribs to "ease" pain

:D

Off for Tysabri on Sunday again, had two months off due to abscess etc . jst back since last month and am stiffer and slower without it,so I'll take my chances with PML!!

LittlemsSkelly · 30-11-2011 5:47pm

Aren't our lives just oh so glamorous? I just know people envy us...:rolleyes: The bruises, abscesses, chills and aches, absolute sex on legs....
My neuro said they started off conservatively, but since this is the second bout of ON in 8 months, first official relapse, they're going to go more aggressive this time. Looking forward to it, I love a challenge

Is Tysabri the infusion drug?

byhookorbycrook · 30-11-2011 8:33pm

Yes, Tysabri is infusion,I have a long drive to get mine,but at least it's on a Sunday.

outnumbered82 · 01-12-2011 12:01am

What did you start taking once you were told you had ms i was told rebif was the best and had some side efects but not to much to handle!! How wrong they were. they offered to change me to something else but made that drug sound worse then the rebif. Im only 3 months on the drugs so dont no about changing it

val444 · 01-12-2011 2:02pm

Hi all, I have gotta make my decision about which drug to try by tomorrow morning. I have watched all the DVDs, read loads about each, etc, and I am kinda thinking Copaxone. I know most people will think I am mad, volunteering to inject myself daily, but I think the more often I do it, the faster it becomes routine, and at least I wouldn't find myself dreading one particular day every week? Thoughts?

byhookorbycrook · 01-12-2011 4:01pm

Val. my neuro says Tysabri is given now in some countries as the first drug, might be worth asking what the story is for you?I was on betaferon at first.Injecting every 2nd day, not fun, but do-able.

BengaLover · 03-12-2011 11:55am

Ok so, my husband is a sufferer, with wide range of intermittent and ongoing symptoms, and I was browsing one day and found out about SERRAPEPTASE..
Its an enzyme that the silkworm uses to break down the shell to get out of it,, and is being called the miracle enzyme, so i decided what have i got to lose, research shows that it can break down the plaque on the nerve endings and help a range of symptoms..
Aside from that he also has severe cervical spondylitis and the Serrapeptase is claimed to help other pain too, the link is here for you to look at, http://www.serrapeptase.info/category/multiple-sclerosis/
and I ordered some from a site in uk called Health Spark, as you cant get it here. Within 2 weeks of a high dose his symptoms improved radically, ok, so hes not cured by any means, but some relief was got, along with a high dose of EPA alongside it.
Strange that its widely used in European countries but people here have never heard of it.
Hope this can help some of you in some way, its not too expensive either, and the site delivers within days of ordering. (about 12.99 i think?)

pbarr · 03-12-2011 4:39pm

BengaLover wrote: »

Ok so, my husband is a sufferer, with wide range of intermittent and ongoing symptoms, and I was browsing one day and found out about SERRAPEPTASE..
Its an enzyme that the silkworm uses to break down the shell to get out of it,, and is being called the miracle enzyme, so i decided what have i got to lose, research shows that it can break down the plaque on the nerve endings and help a range of symptoms..
Aside from that he also has severe cervical spondylitis and the Serrapeptase is claimed to help other pain too, the link is here for you to look at, http://www.serrapeptase.info/category/multiple-sclerosis/
and I ordered some from a site in uk called Health Spark, as you cant get it here. Within 2 weeks of a high dose his symptoms improved radically, ok, so hes not cured by any means, but some relief was got, along with a high dose of EPA alongside it.
Strange that its widely used in European countries but people here have never heard of it.
Hope this can help some of you in some way, its not too expensive either, and the site delivers within days of ordering. (about 12.99 i think?)

Thanks thats great info and I will defenitely try it but one question the EPA that you mention?

BengaLover · 03-12-2011 5:44pm

Just one of the recommended supplements thats is suggested to help ms - high dosages of Evening Primrose Oil.. I dont think it made any difference to him but it was worth a try.

val444 · 04-12-2011 10:51pm

Hi all. So I chose copaxone, mainly because it is the only one which doesn't give ya the flu! However, looking at the (extremely long!) list of side effects, one of the "very common" ones is flu! Bit worried now that I have agreed to inject myself daily for no good reason...

One thing I am not sure about is when the nurse should call, to show me how to do the injection. There was no mention of it by the neurologist, and the pharmacist wasn't sure. I thought there might be a phone number in the box of syringes, but unfortunately not...

I have emailed the neurologists office so we shall see.

corazon · 05-12-2011 12:38am

Hi folks, just watched a fascinating TED talk on MS by a scientist in the US.

"Dr. Terry Wahls learned how to properly fuel her body. Using the lessons she learned at the subcellular level, she used diet to cure her MS and get out of her wheelchair."

trishawisha · 05-12-2011 1:54pm

Hi Val, I just wanted to say well done for making up your mind, its not an easy decision!
About the flu, the other medications give you flu like symptoms for a short period of time, afaik, but you don't actually get the flu. Iv been on copaxone since April and no flu like symptoms so far.
The only bad thing I have is the injection site reactions, these take days to go away. But the nurse was kindof making it out like I must have sensitive skin, that a regular person wouldn't be getting the bad reactions..?
Within a week of agreeing with neurologist about copaxone the copaxone nurse called me and we agreed a date for her to call out.
The first meeting she was here for about an hour. You will have had to collect the prescription from your chemist first.
Best of luck with it.
Oh ya just if you're worried about getting the flu, you should go get the flu vaccine. My Dr told me It is recommended for those with ms to get it. I got it last week and no side effects.

outnumbered82 · 05-12-2011 3:08pm

For injection site wounds put Aloa Vera on them i was getting really awful looking red rings on my legs and i put it on them andd it really went down.

When i started rebif the hospital passed my info on the company and the nurse got in contact with me, she rang and arranged a meeting and called out after i picked up my prescription she was there an hour or so and then called out a month later for a check up.

ElleEm · 05-12-2011 6:54pm

trishawisha wrote: »

Hi Val, I just wanted to say well done for making up your mind, its not an easy decision!
About the flu, the other medications give you flu like symptoms for a short period of time, afaik, but you don't actually get the flu. Iv been on copaxone since April and no flu like symptoms so far.
The only bad thing I have is the injection site reactions, these take days to go away. But the nurse was kindof making it out like I must have sensitive skin, that a regular person wouldn't be getting the bad reactions..?
Within a week of agreeing with neurologist about copaxone the copaxone nurse called me and we agreed a date for her to call out.
The first meeting she was here for about an hour. You will have had to collect the prescription from your chemist first.
Best of luck with it.
Oh ya just if you're worried about getting the flu, you should go get the flu vaccine. My Dr told me It is recommended for those with ms to get it. I got it last week and no side effects.

I would have fairly sensitive skin too, and get allergic reactions to loads of products for months at a time, then they go away. I was sensitive to aloe vera at the time I started injecting Copaxone (Nov 2010) but now it sooths me if I get too itchy.

The reactions for me took a couple of months to settle down, but now I'm fine, no reactions whatsover.

Hope you start feeling better soon.

byhookorbycrook · 05-12-2011 8:02pm

Flu like symptoms all the time Iwas on betaferon, so timed it so I'd be asleep before it hit too badly.Arms marked badly and still some marks to this day, 5 yrs later.

trishawisha · 06-12-2011 11:39am

I tried Aloe vera gel, neurofen gel and am now using Cortopin which is a steroid cream. They arent as sore now, but would still swell up. Im not usually senstive to anything, so it pissed me off when she said that. Its hardly her fault though.

Fighting Irish · 06-12-2011 1:50pm

Anyone use cannabis to relieve symptoms?

MS in all its glory

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