OzMS :: Index

Re: Is it really that bad? [by KarenH]

Discuss MS here:: Is it really that bad?

Hi Maree, and welcome!

Interesting subject about death and MS. From my understanding Devic's disease, which is a rare form of MS, is more likely to kill you. I do stand to be corrected there, but this is from information I have read about MS and death. Although I do know personally of two people who have both died in their early 50's from MS related illness, as in it attacked parts of the CNS that are critical for our survival. One of these cases I know was the father of a man I met last year who also has MS. Interestingly enough, this guys cousin is married to someone with MS to which I met his wife. They aren't directly related but what are the odds that you marry somone who ends up with MS and you also have an uncle who died from it and a cousin who has it!!!

The other person I know of lived locally and was close friends of a friend of mine. She from RRMS to SPMS and went downhill very quickly and became totally bedridden and within a year lost her battle at 52. Sad but true!!

Then on the other hand there's a hell of a lot of us who have lived with this disease for a very long time and are still here and still going on... Infomation out there says it shortens our life expectancy by 7-9 years on average but they (MS Society info sheets etc;) NEVER explain why that is. I assume it would possibly be a number of things directly and indirectly to do with the MS. Things like damage to organs from medications as well as damage to nerves that control vital organs, plus also loss of function and mobility would have to play a role in the functioning of our hearts and also ageing on top of all that too would play a role.

In the good old days when people were diagnosed with MS they were told their lives were over and told not to exercise and basically go to bed!! Now they know that's not true. They know that exercise is extremely important for many different reasons. Examples: to keep fit, healthy, maintain muscle strength and also good for the mind to relieve depression etc; and to eat well and rest. Honestly, no-one knows when their number is up MS or not, so live each day like it's your last. Enjoy each and every day. Appreciate all the small things in life that prior to MS I know I took foregranted. Now I take time to enjoy a nice sunset and appreciate the smaller things.

MS is not classed as a 'terminal disease' so I'd be questioning why he made the comment he made. There are plenty of people on this forum in their 50's and 60's. It'd be interesting to know who is our oldest member and how long they've had the disease for out of curiousity. Or who personally knows someone in their 70's and up with MS. Maybe Darin (OZMS) can put that out as a challenge to find out??

I do know that they suggest to think about child birth carefully as data suggests that during pregnancy your body fairs quite well but can relapse terribly after birth. To me this would highly suggest that there's a strong link between hormones and MS as when a women is pregnant her hormones change dramatically. It also makes me wonder whether this is why when men get MS they tend to not do as well as women in general with their progression (I'm being general here from information that I have read. Whether that's true or not I can't say). I think I'd would be sourcing out as much info as you can on the pregnancy and MS topic and also take into account other factors as in your current symptoms, age etc; and then make a decision. It does make me question why neuro's don't test all our hormone levels to see if there's some kind of link given the link between no relapses during pregnany and relapses after.

One thing for sure is that I'd personally would be seeking another neuro's opinion if it were me. And how does your neuro know that Tysabri will be the only thing that works for you. No-one knows what is going to work and what isn't until they try it, and even then it's hard to determine with the unpredictibility of this disease. I hope it does work for you and that you don't have many side effects. I'm sure plenty of people will be interested in your progress. There's a link on here somewhere for Tysabri. Maybe Darin (OZMS) may place the link on here for you.
Source: http://www.ozms.org/modules/newbb/viewtopic.php?topic_id=2340&forum=2

Re: MS & Lupus [by pennysue]

Symptoms:: MS & Lupus

Hi Karen,My neuro does the same sort of tests (or has done this time but I dont know results till Friday). My GP does a range of blood tests incl B12, folate, iron, about every 3 months as they found my iron is low & I am anaemic so on multivitamins & iron to try to increase them. he is keeping an eye on all my levels as he says it is important to keep an eye on all of them. I know the last lot of blood tests included a range of other things & lupus is one of them. I will get those results on friday at my neuro appt.
Dont know if this answers your question or not Karen as I dont know why some of the tests just know results are ok & thats all I worry about.
Hugs,
sue
Source: http://www.ozms.org/modules/newbb/viewtopic.php?topic_id=2339&forum=29

Great to be alive!! [by KarenH]

Well-Being:: Great to be alive!!

Had a good visit with the neuro and celebrated with a nice walk in the park soaking up the glorious sun and wildlife and thought as I was walking that you wouldn't be dead for quids!!!

Who'd want to miss a day like today! Spring is most definitely in the air and I say BRING IT ON...as the sunny weather definitely improves one's soul.

Hope the weather is as glorious in all other states today
Source: http://www.ozms.org/modules/newbb/viewtopic.php?topic_id=2338&forum=34

Incontinence Drug Trial [by OZMS]

Medications:: Incontinence Drug Trial

I received this email about this trial a while ago now they had to get ethics approval or some such thing, they have that now. I will post what I have.

Allergan is currently running a trial for people with MS who experience regular incontinence. There are sites in Australia, NewZealand as well as other countries.

Allergan.com

Allergan.com.au

Allergan PDF

Dignity Study Information (OAB 515):

The Dignity Study is a medical research study investigating a potential new medication for urinary incontinence due to overactive bladder.

To be eligible you must have:

▪ no significant changes in treatments or worsening/improvement for at
least 3 months
▪ urinary incontinence as result of an overactive bladder for a period of at
least 3 months
▪ Willingness to use intermittent catheterization

Some good reasons for considering getting involved in the Dignity study:

You will be taking part in a clinical study of an experimental medication that may control your urinary incontinence episodes and help improve the lives of others like you
The investigator and site study team will ensure that you are monitored and looked after; they will listen to you and discuss any questions you may have.

All investigational study medication, medical exams, and lab tests will be provided at no cost.

You can make a difference by getting involved in medical research that could shape the future treatment of urinary incontinence. For more information please contact:

Dr Kadi Tamaddon 02 9382 4286

The Prince of Wales Hospital, Randwick

The protocol for the Dignity study has undergone the appropriate review by regulatory authorities and ethics committees.

If you are interested and want to find out more, try the contacts below.

Sydney, Prince of Wales Hospital
Dr Kadi Tamaddan (she finishes work about 3.30 each day)
02 9382 4286

Royal Brisbane and Women's Hospital
Shona McKenzie
07 3346 5551
Source: http://www.ozms.org/modules/newbb/viewtopic.php?topic_id=2337&forum=30

Comment on Time for an Update by Sue Wilson

Thanks for sharing your update Barb. You have sure been through a lot as a family with both ups & downs.
I can understand you going off the injections & hope that nothing further shows up on next mri. I hadnt heard of the monthly injection but was on an oral trial for a while & it was helpful for sure.
Good for you doing the survey too. I enquired about one but then got sick so didnt go any further.
Hugs,
Sue

Source: http://www.ozms.org/modules/wordpress/?p=329#comment-133

Comment on Angry and confused! by Sue Wilson

Lisa, I really feel for you going through all of this added stress. I agree with what Karen said about other words to describe your ex. As I read your blog I immediately thought that you should contact the ms society as well. They have been very helpful & supportive when I have asked for help.
Get all the help you can, letters from the school & anyone else that your daughter goes to regularly, your Dr to say that you are capable of bringing up your daughter & doing so now & whatever else you can get. PLEASE get some legal or other help with your fight as you shouldnt try to do it by yourself. There are people out there who can help you, MS society, local citizens advice free legal aid are just what come to mind at the moment & I am sure they will all help you.
Sending you lots of hugs & please keep us updated.
Sue

Source: http://www.ozms.org/modules/wordpress/?p=328#comment-134

Comment on Angry and confused! by KarenH

I really feel for you Lisa!! I could think of a few adjectival phrases to describe your ex but they wouldn’t be allowed. lol.

Have you called the MS Society in regards to this?? I’m sure they’d be interested. Also they could supply you with a number for legal consultations with solicitors who deal purely with disability cases and I think that’s where you need to be coming from, have someone who knows how to fight this coward of a man!!

I raised my son on my own and I have MS (have been having symptoms since 77), and he’s just finished a double degree at Uni. He always got to school on time. Never missed out on any of the important things, and yes while I was tired than most mums, it didn’t change the way I love and look after him or change my capabilities in any way as a parent. And it certainly wasn’t detrimental to him either. In fact, he is a more well-adjusted young man as compared to most. He is kind, considerate and compassionate, and I’m proud of the man he has become!

There are plenty of us out there who do this on our own and usually because the partner goes running with their tail between their legs because they can’t deal with the MS. The uncertainty of what lies ahead seems too much for a lot of them. All about them!!

Your ex should be looking at ways to help support you, not destroy you. He should be looking at maybe having your daughter for some school holidays so that you can have time out.

I really wish you a favourable outcome. I hope you daughter gets interviewed so that she can express her wishes too. Do keep us updated.

Source: http://www.ozms.org/modules/wordpress/?p=328#comment-132

Comment on Angry and confused! by kim

You’re right Lisa, he is an a**hole!! A big one at that!!

Source: http://www.ozms.org/modules/wordpress/?p=328#comment-131

Time for an Update

Thought it was time to write an update.
Well the past year has certainly been interesting for me, and rather hectic.
Lots of family problems with my second son - Rob - and his partner.
After lots of troubled times…. she has taken off with their son, Jackson (now nearly 2yrs old), and has lied and schemed her way into a womens shelter, taken out an Intervention Order against Rob - more lies- and not allowing any of us to see her or Jackson. This has caused much pain and heartache for all of us - legal fees are horrendous, not to mention the emotional stress and strain of the whole situation.
In May this year, Andrew (my youngest child) turned 18, Megan (my only daughter) was married, came home from her honeymoon and turned 21 the next day. Suddenly Im feeling ‘old’ lol.
Through all of this, my MS seemed stable - yes I had a few bad days, but no relapses etc - which was kind of surprising!!!
About 6 months ago, I took myself off the Betaferon injections, as I was really struggling to ‘force’ myself to do the injections every second night. After being off the injections for about a month, I had a talk to my GP, and gradually weened myself off the antidepressants, and Tegretol (for tremors). Currently the drug Im taking is to relieve bladder urgency.
Overall Im feeling alot better within myself, and have the feeling of being back in control of my life and my MS.
Last week I saw my Neuro, and had a good talk with him. He agrees with my decision to stop the drugs, but wants me to have another MRI done in Jan, and see him again in Feb. His view is that if there is very little/no change from my last MRI then he is more than happy to keep me off the drugs at the moment. If there has been changes, he would like to talk to me about other MS drugs, but agrees that an injection every second day is probably not the best thing for me. Apparently there is a monthly injection that can be given by your GP, but he didnt mention the name. I asked when an oral drug will be available and he said not for about another 2 years - therare human trails going on right now - and so far results look promising.
I have also enrolled in a survey about quality of life for PwMS. It involves ticking the most appropriate box regarding your feelings/emotions, mobility/disability etc. This survey is to be completed every 6 months for 3 years. Results will be used to help determine support resources/services etc.
Well, I think that is about it from me for now.
Will try to update more often…..

Source: http://www.ozms.org/modules/wordpress/?p=329 Barb

Angry and confused!

Hi all, havent been on this site for so long but i never forgot it tho! life has been busy, i was diagnosed nearly 3 years ago now and have been one of the luckier ones, just get bouts of optic neuritis and fatigue, numb foot and weakness all over.. but hey still working part time, have a 9 year old daughter raising myself as father moved away to NSW.. now he has the nerve to try to get custody of her on the grounds i have MS! i tell you he is an a**hole. i just spent the day at court listening to everything his lawyer can try to do to put me down cos of this bloody disease.. now i wish i was me again, not the one that has to suffer the pain, tiredness and the rest.. why do people think about MS as if its the end of all, cos it isnt.. I can raise my daughter just fine, so what if i may be tired more than most parents, but she still gets to all her activities out side of school, she gets to school on time, all of it.. god im so angry at him and angry at the MS, cos if i didnt have it, he wouldn’t have a chance in hell of getting her.. anyway im just venting and so tired too cos now i cant sleep cos im on a high dose of cortisone and my body aches all over cos , yes, due to the stress i have lost vision in my right eye again!now do i go to the hospital to get a full dose or do i stick to the pills that may work but not as well, knowing he will again try to use it against me again!.. AAARRRGGGHHH pr*ck! anyway there ya go thats a small vent from me! Hi all again and ill visit more often from now on cos i have along road ahead with court and may need to vent again!

rant, off your chest, MS sucks

Source: http://www.ozms.org/modules/wordpress/?p=328 Lisa