I'm Elly. I'm 35 and have 2 beautiful little boys.
I have had an Episode of altered sensation that has been investigated with an mri which showed 2 areas of inflammation on the brain and 2 in the spine. I had an lp last week and i will get the results next week. Blood tests have been normal.
I have been told by my neurologist that we just need to wait and see. He doesn't know if this could be a clinically isolated syndrome or if it's ms. It seems to be very hard to diagnose ms in Australia .
As i have a very young family i don't want to wait around for a possible second attack.
My question is ....what would be reasonable options for someone in my situation?
I want to go into the dr's office with a bit of an idea.
I would consider meds but i have read so many horrible stories about the side effects.I would also consider statins but i don't know if this is something they do in Australia.
Any advice or opinions would be greatly appreciated.
p.s i'm actually physically well with no other symptoms except the sensoty ones.
Also is this not the best time for these meds to work? after a CIS?
- Family Elder
- Posts: 599
- Joined: Fri Mar 25, 2005 3:00 pm
- Location: Northamptonshire, England.
First of all, you've done a good thing in finding this site: information and knowledge are powerful tools to use when discussing your options with a health care professional, and you can gain both of those things from the members here as well as support, understanding and advice. Don't worry about all the technical jargon: a lot of the gobbledegook will become much more familiar to you if, in fact, you do find yourself needing to come here more often and anything you don't understand, just ask.
If you click on the link below, it will take you to a page which gives a fairly clear explanation of CIS, how the results of MRIs and lumbar punctures can predict whether further lesions, (and therefore development of MS), are likely, and the trials that seem to confirm what you said -- that early intervention with DMDs, (disease modifying drugs... researchers just LOVE acronyms), can delay progression. From what you said, your lesions are separated in space and if it can be shown that they occurred at different times, then they may start to think more along the lines of MS, (I AM NOT A DOCTOR, so please don't take that as medical advice, or a diagnosis: it's just an opinion -- I'd hate for you to worry unnecessarily).
I'm afraid I don't know anything about the availability of different treatments in Australia, just that there is some cutting-edge research going on there. If you're offered different drug options, the risks and side-effects should be made clear to you, but try and remember that things like the recent disastrous drug trial may hit the headlines but are few and far between.
I hope that gives you a little bit of information. This must be a very worrying and uncertain time for you, and I really hope you never have to visit this website again , but if you find that you do, it's a good place to be!
"wait and see" is not a good idea in my opinion. take action with respect to nutrition now, and you may be able to turn this around. there are three indicators i have looked at in detail so far with respect to ms and nutrition, and these are vitamin D3, uric acid, and vitamin b12. ask for baseline tests of:
-serum vitamin D3 (the test calls it 25hydroxyvitaminD3 and don't let them tell you it should be 1,25dihydroxyvitaminD3)
-serum b12 (they might order a couple other associated tests along with that one)
-serum uric acid
the levels you want to aim for are 100nmol/L for vitamin D3, 500 for b12, and 290 for uric acid (read about the importance of this at http://en.wikipedia.org/wiki/Uric_acid - i am one of the editors of that page and have cited relevant journal abstracts that you can click through to and read). if you want the units for these tests i can get them for you, i just know the D3 units off the top of my head not the other two. i can provide you with additional abstracts to support nutrient monitoring and supplementation if you want to take some research to your doctor to back up your request for testing. if he won't do it then i believe you can go to a naturopath to order the tests, you just have to pay for them yourself. that is how it goes in canada, but when i was in australia i didn't have a problem going in to the health clinic at my school and telling them which tests i needed. if you know more than they do going in, it helps. being proactive is your best tactic right now. "wait and see" is status quo, and that's how you got where you are now. you can keep heading down the same road, but you need to change something if you want your health restored. i'm not usually such a hard ass so here's a hug <hug>elly</hug> good luck!
I'll be seeing my neuro on Friday so i'll discuss some drug options with him. I'm happy to wait and see if my lp results are negative but somehow i don't think that will be the outcome .
I would certainly prefer not to take any meds but if they are shown to slow down progression then i'll be definately considering them (assuming he offers).
- Getting to Know You...
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- Joined: Thu Mar 08, 2007 3:00 pm
- Location: New England
Welcome to the board. I am very sorry to here about your CIS episode, the time before any 'official diagnosis' is very scary for most people and there is a bewildering amount of information on the net about MS- some good and some bad. Using this time to find out as much as possible is a really good idea and if nothing else a positive coping strategy.
The first thing I would say is make sure your neuro is an MS specialist-there is a huge difference between a general neurologist or one that specialises in a different condition to one that specialises in MS. The Austrailian MS society will be able to help you locate on near to you. Even if you are happy with your neuro there is no harm in seeking a second opinion from an MS specialist.
In the UK at least there is a move to treating MS as early as possible with the DMDs, and at CIS stage. I don't take one as I have so called 'benign'MS but if this changed I would sign up tomorrow for copaxone. It has the best side affect profile and while it's mechanisms for action are still not fully understood it appear to offer some level of neuro-protection as well as helping to control the inflammatory stage of RRMS.
It is a risk to benefit judgement and only you can make it, if you decide not to take a DMD then consider what Jimmylegs is saying and start taking a good D3. Innosine or brewers yeast is another good option as this helps increase your levels of uric acid, a scavenger that decreases Nitric Oxide, one thing that is thought to cause the neurological damage in MS.
Good luck Elly,