Australian MS Bandsters

[ajtonya 0]

Ladies,

I am not a RN but a MA. I work with great RNs though you all have such great dispositions. What Med do you all take I take Avonix. Have you all heard of Tysabri. I was in that trail at work. THey pulled it for a while but it is back out. It seems to be a great chance for us in the future. I am not yet on it because my doc felt with surgery I should wait a while before we start it. Love chating with you ladies. Stay blessed.

[kebsa 1]

I was on copaxone for a while but had an anaphylaxtoid reaction- my face an airway instantly swelled to the point that I could barely breathe, it was so quick ( i still had the syringe in my hand!). I have been on betaferon for about 18 months now and I am doing quite well on that- no major side effects. Have not heard of the Tysabri but do remember reading something about a med that was being trialled, stopped then re released- I will do some reading.

I also try to follw some of the dietary guidelines that are thought to reduce the inflammatory changes of MS ( not quite the swank diet but similar) basically low fat, minimal red meat, Omega 3 oils but not Omega 6 etc. It fits in well with weight loss principles so can't hurt!

I am assuming that MA is medical assistant, is that correct? Never seen them here in Australia but I am sure that we will. What sort of area do you work in?

[ajtonya 0]

I work with risk management and I also do Social Security Disability. I also do assist the Doctors from time to time. I work with Neurologist go figure!! When you look up Tysabri let me know what you find out some of the info may look scary but I will send you the info my Doc has to help clear anything up. Great drug slows the pregrestion down by up to 90% and can lesson lessions already on brain or spine. I will chat with you later. Have a BLESSED day!

[kebsa 1]

Certainly will look it up, I'll do it from work as I have access to some fantastic medical databases there and as long as it is medical/nursing related they are quite happy for us to use company time in moderation of course. Must be handy working for a neurologist, at least you hopefully will not be subjected to some of the negative stereotypes of having a neurological condition in the workplace!. My supervsor found out about my MS about the same time i was diagnosed and I spent the next 12 months fighting to save my job- one person with a poor understanding can make such a differance. I won eventaully but it took help from an advocate from the MS society employment support service and a union rep threatening legal action- sitting through 3 days worth of neuropsych evaluation and 12 months of fighting- but I survived!!

As for the stuff about Tysabri being scarey, i don't scare easily, I believe in leraning the best possible outcomes as well as the worst, what the liklihood of each are etc then evaluating where I fit into the scheme things. I can live with a bad decision I make for myself but not a bad decision someone has made for me ( but meaning well). betaferon has some potentially scarey side effects too but long term studies have now said that these sorts or meds are so important they should be started sooner rather than later- apparently with RRMS even when we have no active symptoms, it has been shown that the inflammatory changes that lead to damage can still be occuring. I have decided to be fairly aggressive with MS treatment but that is mainly because I was already physically disabled before the MS- even relatively small changes from the ms can have an effect on my overall independance. Interesting to know that they think this new med can lessen established lesions- I will deifnatley do some reading!- keep in touch

[susannah 2]

Hey Karen, I didn't know you had to go through the ringer with your employer like that. What an ignorant ass! I really don't tell too many people I have MS, as they really don't have much of a concept of what it is, or they expect you to be in a wheelchair, and not walking around etc.

Because I am mobile,( Some days it is easier than others) people can't grasp that I have this condition, but believe me I can feel it.

Those of us with the disease need to fight anybody that would seek to put us on the scrapheap. We are valuable members of society and have a role to play like anybody else. Good on the MS Society for going in to bat for you.

I don't have a whole lot of contact with them, only when I have a relapse really.

Susannah

[bronnie70 0]

I dont have anything to do with the MS society.... when i was first diagnosed in 1997 when my son was 6 weeks old.. My neurologist contacted the MS society on my behalf. Then... a social worker and an OT came over for a visit........mmmmmmmmmmm

Well that was enough to depress me........ they talked about the services they could offer when i became permanently disabled and talked about incontinence, bowel problems, types of rails that could be fitted etc. I didnt need to hear that, I was a newly diagnosed mum of a tiny baby that needed me to be fit and healthy... i needed positive thoughts and i didnt get it. i spent the next few weeks in tears and then i picked myself up and have continued with my life.

10 years on and i have had another child and a recent MRI shows that the MS hasnt progressed very much at all.

I dont tell a great deal of people i meet as i get a look of pity.......... I dont have any idea how the MS will affect me in the future and truthfully I dont want to know. One stupid woman at my work found out and approached me.... she said ' arnt you scared, have you organized for someone to raise your children and the next remark was , as she got tears in her eyes.... your so brave to keep working when you know your going to die'............... ah !!!! I just said............. Not sure if you realize but your going to die too, we all do. stupid ,stupid woman.

[kebsa 1]

MUst admit my experience with MS society was very different but we are in different states too, the staff i dealt and still deal with focus on the positives and are very quick to say that there is no reason to assume that ms will progress to the point of severe disability. I do remember having some of the same thoughts and feelings when I became wheelchair dependant, which was almost a decade before the ms was diagnosed ( totally different health issue). I have had medical professionals who are very quick to blame every little health issue on the ms rather than checking to see if there is another issue and I am very quick to ask them to justify there thoughts -amazing how things cahnge when you make them think a bit.

As for the stuff with my supervisor- yes it was really bad, the annoying thing is that I did not tell her about the ms, she found out through office talk that started as well meaning support from friends. the organisation i work for has been very good about supporting me in the past but this one indivdual, a person in a position of authority made some major assumptions that would have made her look really bad so she then did what ever she could to make her story look true. The hardest thing was her trying to allege that I had such severe cognitive problems from the ms, that I had no insight into my problems ( funny how only shortly before this when she did not know about the ms, she gave me a glowing annual appraisal). It was the message that my brain was so damaged i could not trust my own assessment that hurt the most. Thankfully the neuropsych assessment cleared me of problems other than some stress related issues that the tester put down to the way my supervisor was riding me. I still have to deal with this person. The advocate from the ms societys employment branch was very helpful with dealing with the HR dept, She was able to politely tell them when they were making really big, dumb assumptions about ms

[susannah 2]

Hi Msers!! On the MS NSW/VIC website there is a pdf file regarding some new proposal/issue regarding Betaferon. The file won't download on to my computer for some reason. I can't even read it on the site. Could somebody read/download it and tell me what it is about?

Thanks

Susannah

[kebsa 1]

Hi What I can see si where the TGA has approved the use of betaferon for the use in ms in "clinically isolated syndrome"

Bascally und the orignal pbs rules you could only get betaferon if you had confirmed ms and the offcial diagnostc guidelines said you needed to have had 2 definite attacks in a space of about 2 years characterized by a certain number and type of lesions on mri. All this delayed diagnosis and potental use of betaferon. They have recognized a state called clinical isolated sydnrome where the one attack of ms looks really quite defininte and there is "proof" of previous dmage on scans- it looks like that this will be enough to get you betaferon now. Some studies have indicated that these meds are best used as early as possible to prevent accumulation of inflammatory changes but the old guidelnes for the TGA and pbs made that impossible- my Doctor told some white lies to get my the betaferaon as I had had one 100% definite attack, plus evidence on mri of old attacks but techincally to get betaferon I was supposed to wait unitl the next attack- we fibbed a bit, now we would not have too. They used to say no need to take the meds until you have signifcant probs, but current research says that its best to consider them before you have significant issues- the whole pont is to reduce disability.

Sorry if that is rambly and lots of errors, I am having a flareup at them moment and it is affecting my vision, co ordination, speech. my swallowing has gotten worse so I was unflled last weekend- no have small refill. I am now on steroids too to see if we can get this to settle a bit quicker- this is my second attack in 6 months but before that I had not had an attack for 2 yrs- my last attack was pretty mild so I am hoping this one settles quickly too

[susannah 2]

Hi Karen, Sorry you are in a flare. I hate IV methyl Pred so much. Insomnia, depression etc etc. Hopefully the roids will nuke this latest flare for you. I had a course last year. Regarding the Betaferon, I should maybe think about going on meds, but am so focused on all things lapband at the moment that I have been putting it on the back burner. I keep thinking that I will just deal with attacks etc as they come up. Still thinking.

Susannah

[kebsa 1]

As I said before Susannah, am not sure if I would have been quite so qucik to go on them if it were not for the fact that I already had significant disability prior to ms- fear of losing my independance is really strong! I know we do not know what will happen with ms but I just felt I was behind the 8 ball a bit from the start. Having sad that after reading a lot of the latest research I am confidnet that there is reason to believe that the meds can reduce the frequency of relapses.

I am still struggling at the moment. the Vertigo keeps coming back. in the past it has lasted about 1 to 2 days are a time- this time I have had it for about 10 days- it eases off but does not go and i am really feeling queasy tonight. At the moment the steroids don't seem to have made a big difference ( aolthough i guess we cna't be sure that things would not have been worse without them). the anti nausea meds jsut don't seem to help and feeling dizzy and sicl all the time is awful- i am not sure what to do about t- I can't sleep as when I close my eyes the room spins. I would welcome any suggestions

[susannah 2]

Hi Karen, I have never experienced vertigo as part of my disease course.It must be horrible for you.:mad: I wonder where exactly in the brain the lesions must be located to cause the vertigo type symptoms?

You are amazing mate. Next time I have a little pity party for myself, I will remember that others are doing it much harder than myself.

Keep storming the trenches digger!:biggrin1:

Susannah

[kebsa 1]

they think the lesions responsible are in the brainstem but I have lesion scattered everywhere- when they saw my mri they were really surprsed I did not have many problems- I don't think the mri's mean much other than confirming the disease- one lesion can be enough to make life tough for someone if it is in the wrong place while close to 40 like i have can cause mnimal problems. do worry that I may be crossingover to secondary progressve though but I will not raise the issue unless my Doc does as you don ot qualify for betaferon on the pbs if you have secondary progressve yet the research is promising- I will continue with the betaferon as long as possible.

The vertigo is the symptom that led to diagnosis for me, it is not common and luckily for me it usually only happens when I am really tired and last 24 - 48 hours - his time it has been less severe but has been there most days for 2 weeks now- it is makeing life tough- I can live with the muscle spasms, bladder probs,fatigue etc but i really do not what to have to deal with vertigo permanentl- the only benefit s that my weight loss has picked up - because I feel so queasy most of the time

btw I love your new tcker

[kebsa 1]

Well I have not checked in here much recently, I am still struggling with the ms at the moment. The vertigo has been a right royla pain the the butt and has been making me really queasy. I was referred back to my neurologist to supposedly for a course of methylprednsolone but I found out tonight that he is away for the next couple of weeks and they have made an appointment for the 31st of April! not much help when I am having a flare now, and now I can't even talk to my gp about this until next week. I am having real problems with focus/ depth perception, my bladder problems have gone from nuisance to down right embaressing and I keep gettng painful spasms in my leg. now in the past couple of days I am having short periods when I am gagging on fluids- I have had some swallowing problems in the past but never to the point of gagging on ordinary fluids- the vertigo and that both scare me. the gagging because I feel like I am choking when it happens and the vertigo because it is so sever when it happens! it has persisted for at least a few hours each day for over 3-4 weeks now and although not gettng worse, it is not any better. they gave me stemetil and serc but neither has helped at all. it s havng a real impact on uni, work and just day to day life. I was hoping that maybe the methylpred may improve things a bit but I worry that it may be getting to the pont that this falre has been happening for too long, particularly if i can't get in to see the neuro. Now thats it is friday evening, I do not know wether to tough it out for the weekend and see gp on monday or front up at A&E to see if they can refer me to an alternate neuro- I am jsut so tired of feelling nauseated, today I ended up throwing up in the back of a taxi when a bout hit, i am getting too scaqred to go out! What would you guys do??

[kebsa 1]

hi guys, I have jsut come out of hospital for the 4th time in the past month. I stll really crook. no energy at all and feel dizzy most of the time. Even with the steroids I do not seem to be making much headway. I f I have a better day and start thinking thats things are getting better I start feeling pretty crook again. My neurologist is being very supportve but he says it is just a case of time and riding it out. LAst time I had a falre like ths with these kinds of symptoms it was almost 6 months of going in and out for hospital. For some reason I can't stop crying, i feel so miserable. Overall my life is good at the moment and I have noting other than the ms to really be bothered about so I do not know where all the strong emotons are comng ffrom. I'm not sure if ists because I am relating this episode to the one that made me ill for months or if t is possibley a sde effects of the steroids. I don't like it what ever it is as it makes me feel lilke i am not in control of myself. crying at the dro of a hat in a public place is very embarassing. I can't work at the moment or go to uni so I am pretty much stuck at home. any prayers to help gve me strenght to endure this would be gratefully received. thanks for listening to me whinge