Hi there

A forum dedicated to the younger people living with MS reflecting their unique concerns.

Hi there

Postby Ellenem » Sat Nov 20, 2004 6:18 am

Hi, I’ve been lurking around the site for a while now and there’s some excellent information here. I’m 23 and was diagnosed with MS 5 years ago. After a bit of a rough patch about 18 months ago I think I have finally found my feet again (in a manner of speaking :D ) and got things under control.

I’ve taken avonex in the past which only seemed to make things worse unfortunately. I’ve been on LDN and used diet and supplements for about a year now which seems to have stabilised things. However, I’m not easily pleased so just stabilising things isn’t good enough for me! For this reason, and after it was suggested to me, I decided to try the anti chlamydia pneumoniae antibiotic regimen. I’ve been on them just a month now and things are looking promising as my legs seem to be fractionally stronger already so I am cautiously optimistic.

I wasn’t sure whether to post in this forum or not as it seems very quiet but then I thought that it’s important for us younguns to hear the experience of others in the same situation. I think it’s brilliant that this forum is here and it’s just a shame that it’s not used more.

Although I feel in control (well as much as I can be) of my situation now I can still remember the disbelief and the confusion I felt when I was first diagnosed. I know it’s the same for anybody any age when you’re hit with a diagnosis of MS but I can remember how isolated and lonely I felt as nobody seemed to understand. My family have always been very supportive but they have never been great at dealing with the emotional side of things. I find it very difficult to talk to friends about my MS as it’s hard for them to understand what I’m going through because they’ve never had to deal with anything like this. I’ve lost a lot of so-called friends because they were uncomfortable with my situation. Also I sometimes found it difficult to join in with some MS communities because I felt so much younger than everyone else.

Having said all that, I have now found some wonderful friends who have helped me more than they know. Age isn’t an issue when you find good friends and I certainly don’t want to belittle what anyone else goes through with MS, but younger people with it probably do have slightly different issues and concerns. This is why this forum was such an excellent idea. It does make the whole situation easier to deal with when you realise that you’re not alone and there are others who understand what you’re going through.

If I’m honest then the last year or two have been quite hard but I think I’ve moved past all that now, I’m still here and I’m very hopeful for the future. MS may give us physical disabilities but it can’t take away our hopes and dreams. :)
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Postby Axiom » Mon Nov 22, 2004 9:50 am

Thanks for taking the time to post.
I have been mostly lurking for a couple of months as well.

I'm the mom of a daughter who was recently Dx'd with MS at age 16. I'm afraid she is not ready to post or even read here yet (that would interfere with the denial, after all) but I agree that those Dx'd so young do have additional issues/concerns and being able to communicate with others in a similar situation is a good thing.
You know, one of those clubs you didn't ever want to be a part of - but since you've no choice, it's good to know there is a club there for support and exchange of ideas.

Again, I'm glad you posted
Sheila
(who is NOT under 25, but is posting on behalf of another 'youngun')
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Postby Ellenem » Tue Nov 23, 2004 12:19 pm

Hi Sheila

Thanks for the reply. I’m sorry to hear of your daughter’s dx. I can remember how I felt when I was dx at 18 and like your daughter I tried to block it out and just get on with my life. If I’m honest then I’ve only really come to terms with it in the last couple of years but mainly because I had no choice due to force of circumstance. But I hope it reassures you, and eventually your daughter when she’s ready, to know that there is plenty of support out there.

However she may feel at the moment I can promise that she is not on her own. You're completely right in that this is certainly not a club we wanted to become part of but we are here none the less and it can be a wonderful club for advice and support. We are all dealing with this MonSter but to know that you don’t have to go through this on your own can make it so much easier. I don’t know if your daughter is on any of the treatments but it certainly helps to speak to others about their experiences and opinions when it comes to making decisions on the right options for you, and this is an excellent website for that. And hearing how others deal with different symptoms and things can bring up useful solutions. But most important is the knowledge that there are people who empathise with what you are going through and the emotions that go with it all.

I hope in time your daughter will feel able to join in with this or other forums as they can be of so much help but it sounds as if you are doing everything possible to help her which I’m sure she appreciates even if she is having problems dealing with the dx at the moment.

Best wishes

E

:)
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Postby Arron » Wed Dec 01, 2004 3:00 am

Hi Ellenem,

I wanted to issue you a warm welcome to the site and thank you for speaking out. Your points are excellent.

As you seem to have things under control for the time being, you may also consider posting your "review" of LDN in the LDN forum here and/or posting your complete regimin the regimins forum.

Welcome again!
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby Ellenem » Wed Dec 01, 2004 8:12 am

Hi Arron

Thanks for the lovely warm welcome! :D I had already been thinking about posting about my experiences with LDN and other treatments. As I said before Im cautiously hopeful about my antibiotic regimen and will certainly post about this when Ive been on it a bit longer and will hopefully be able to give a more objective view of how its going.

:)
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It is a parenthesis

Postby stsolakos » Sat Dec 04, 2004 3:31 am

Greetings to everyone.

I am suffering MS symptoms since 17 (now I am 24), while the diagnosis was confirmed in early 2001 and started Rebif (which has caused more trouble than MS itself). I am still in a relatively good condition (I can still drive to work and walk short distances). My diagnosis made my whole world collapse, but made me see things through a different eye., since this was the first serious obstacle I have come accross in my life. I can, now, see who my real friends are and how lucky I am, having a relationship with Helen, the most beautiful and lovely girl I have ever met. I don't know where would I be if it wasn't for her.

Ok, enough about my self. :)
I am convinced that in ten years MS will not be an issue, without having any clues to prove it. Many people will throw away their canes and wheelchairs. (including most of us) Imagine ourselves cured. Imagine the amount of mental and emotional strength that we will have developed over the years. We will be 35 at that time and, theoretically, our lives will be still in the beginning. There will be plenty of time to enjoy our wives, children, our lives in general.

So, let's consider this f***ing disease a damned parenthesis.

Be well!
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Postby bromley » Sat Dec 04, 2004 7:07 am

Stsolakos

Welcome to this site - I like you have another half called Helen.

Your ten year forecast is certainly something to keep us going. I also sense some anger which is something that I fully support (in moderation).

We are all going to get diseases, but a disease which affects the brain and body; lasts a lifetime; and gets worse; is certainly a challenge and a half. Keep your spirits up.

Bromley
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Re: Hi there

Postby BeckyLA » Sun Dec 05, 2004 2:50 pm

Ellenem wrote:I know it’s the same for anybody any age when you’re hit with a diagnosis of MS but I can remember how isolated and lonely I felt as nobody seemed to understand. My family have always been very supportive but they have never been great at dealing with the emotional side of things. I find it very difficult to talk to friends about my MS as it’s hard for them to understand what I’m going through because they’ve never had to deal with anything like this.


I can't imagine what I would have done without my family. I was diagnosed a couple months ago (I'm 24). My mother was diagnosed with MS (and they say it doesn't run in families) about five years ago, so my family has basically taken my diagnosis in stride. They're still upset and concerned, but since they already know about the disease and understand the symptoms and treatments, it's easier to talk to them about this stuff. My mom completely understands my fears and frustrations. I can't say I'm glad I'm not the first person in my family to be diagnosed, but it has made things a lot easier.
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Postby Ellenem » Wed Dec 08, 2004 11:27 am

Hi Becky

Im really glad your family are so supportive. It must be awful for you all that both you and your mum have to deal with this but like you say, in some ways it makes things slightly easier in that they already know what theyre dealing with.

This genetic connection is a funny one though because with the hindsight and the knowledge we have now its easier to see that my dad may also possibly have benign MS or something like that. He had one nasty attack of optic neuritis years ago although nothing else since. Even my neuro admitted that this could be more than just coincidence.
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Postby BeckyLA » Thu Dec 09, 2004 6:49 am

I refuse to believe that it's just a coincidence. My family is from Wisconsin and my parents moved me and my two sisters down to Houston when I was 14. My mother's paternal uncle was diagnosed with MS shortly after we moved. He is now in a nursing home in Madison. My mother was diagnosed five years ago. Her first symptom was numbness in her legs after a trip home to Wisconsin to visit her family. Then last July, I flew to WI with my parents for a visit, and a day after arriving, started experiencing the same numbness in my legs. I was telling a gentleman I work with about the connection between flying north and having symptoms and he told me that his secretary has MS, and when she flies to Cancun for vacation, her symptoms go away. Crazy, huh?
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Postby Ellenem » Thu Dec 09, 2004 11:15 am

Hi Becky

That is another really weird coincidence although I dont really know what it means! I live in England, just outside London, and my first ever MS symptom was also numbness in my legs and that happened just after I flew to New York for a holiday with my family.

I had never really associated travelling with symptom flare ups but maybe there is something in it.
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Postby OddDuck » Thu Dec 09, 2004 1:36 pm

Hi, ladies!

I'm not your age by any means, BUT.........I couldn't help but notice your comments regarding travel, etc. and feeling better or worse.

I found the same thing over the years. When I moved from Michigan (north) to Florida (south) some years ago, I couldn't believe the difference in how I felt health-wise - i.e. SO much better! (Much more sun down there, salt air - I don't know what all could have accounted for it). BUT.......if I travel at ALL back north toward Michigan, I feel sicker as I go. That's the honest truth.

I'm halfway in between those two states now (in Tennessee), and believe it or not, my health is also now behaving somewhere in between the two extremes I experienced between living in Michigan and living in Florida!

Call me nuts, but I SWEAR there is something in some geographical areas that makes some individual's health either better or worse. And I also found that the change literally almost happens immediately once I cross the state line!

Weird, huh?

Deb
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Postby Ellenem » Fri Dec 10, 2004 5:02 am

Hi Deb

This is pretty interesting stuff! Its reasonably well known that people who come from different areas are more or less susceptable to MS, presumably because of differences in diet and different exposures to vit D from sunlight.

Id never really thought much about the potential differences from moving to different areas though. Ive lived in the same place all my life and havnt done a great deal of travelling so apart from my New York experience I cant really comment first hand.

Having said that Im sure I have heard of people moving to warmer climates and it doing wonders for their MS! Ive no idea why this should happen but hey, its gives us all the perfect excuse to move somewhere warm and sunny :wink:
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Postby BeckyLA » Fri Dec 10, 2004 7:58 am

I tried talking my boss into transfering me to Cancun. He offered me Trinidad but its not the same.
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Postby CCmom » Mon Jan 17, 2005 2:18 pm

Welcome to all the new people! Maybe this group will take off after all. It's nice to hear all the optimism - like a ray of sunshine. I am like Axiom, I have a 16 year old son who was diagnosed at 13, and I am the one who goes in for the support, not him. In my case, I don't see it as denial on his part. I think it is because everytime he gets on line he's bombarded with instant messages and never makes it to the groups I try to get him to check out!

He is also using LDN since June of 2004. He used Rebif and Avonex before that, and both caused alot of problems for him. Arron is right, hop over to the LDN forum now and then, as well!

Not much time, but wanted to welcome everyone. Take care!

Kim
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