I feel lost and scared

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
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Post by scoobyjude » Sun Jul 29, 2007 4:07 pm

Dynamo, your story has inspired me to quit whining and start living! Thanks :D

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Post by amalisa » Mon Jul 30, 2007 2:33 am

Dynamo, thank you so much for your smart and yet calming post! You don't know how good it does to hear someone who lives a normal life despite of MS.
When I got my probable diagnosis in January this year I had two pictures of this disease in my head. One was my friend who (male, 37) had it for 19 years and is thinking about a wheelchair, the other was a women (56) who used to come every Monday evening together with her carer to the café where I jobbed during my MA-studies. She was wheelchair-bound and had lost the use of both arms. While she was telling her witty stories or discussed politics with the other habitués, her carer raised the glass for her and fed her. This scene both grieved and fascinated me. I stopped working in this café years ago but I have seen this lady and her carer recently in town. So she is still around, and must be 60 or 61 now.

In february I decided to visit a meeting of the local MS society. I wanted to face this "condition" but what I saw was not at all congruent with the claims of the MS society's homepage, that only the half of the MS-population will need a wheelchair, have normal life etc. There were 9 persons (+me). 3 in a wheelchair, 3 with cane thinking to get a wheelchair, one in a weird frame that kept him upright and 2 with "classic MS-gait". They where very kind and cheery (not depressive at all). I guess in that evening I saw the other half of the MS-population. I returned home with mixed feelings, it all seemed so absurd to me, I could not imagine that I had a 50:50 chance to become like them! I was walking, completely functional, looking like every one else on the street. One the other hand, the people I had met this evening and the regular guest in the café seemed to bounce MS well (at least in public) with all its restrictions.

So the picture I have of MS is that of the not so fortunated half, I guess the other half just continues life and simply does not show up in the masses or in this forum. Look the campath-people here have become very lazy with posting (good sign, isn't it).

Robbie, I will take your advice and try to use my time wisely.In fact I was on a two-days hiking tour last weekend in the Lauterbrunnental(apparently Tolkiens inspiration for Rivendell) and my legs walked and walked in the burning sun like they allways did. Today I have a very bad muscular ache. But I guess this is normal after two days of hiking. I will continue the things I love as long as I can and as good as I can and feed my memory with good souvenirs, just in case...

Bob, let say this HDC worked and the PwMS would be able to live for 20 or 30 years without MS before it shows up again. Well, that would be super! 20 or 30 years is a long time in an MS-life and by then research would be gone a step further, I hope. But when reading about all the complications that let say a virus-infection like measles can have in an adult person,I really am not sure if I want to press the "all reset" button. It is a good sign, that this woman is doing well after 7 years of the HDC-therapy. What about the others (that is not a question towards you)? I wonder if they all get monitored to get a more precise picture of this therapy and its long-term effect.

This is a terrific forum, I only wish I could formulate my thoughts better in English. Must fresh up a bit the prepositions and conjunctions.

A good day and week to all of you

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Post by Loriyas » Mon Jul 30, 2007 4:24 am

I don't go to any meetings like the one you did for the exact reason you found. Instead I've found that it helps to focus on organizations who are trying to find a cure. There are many of them, but the one that my husband and I became involved with is Accelerated Cure for Multiple Sclerosis. Art Mellor's business model approach to finding a cure for this disease is exactly what we felt we needed to be involved with.

My suggestion to you is to find something that you feel is right for you. Being proactive is the best way to deal with this disease, I find. Simply waiting for someone else to do something is not the way I want to live with it. I feel better being involved with something. I hope you will too.


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Post by robbie » Mon Jul 30, 2007 4:37 am

Dynamo, what drugs have you taken to be so good? you must be on one of the crabs. thx
Had ms for 24 years now.

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Post by TwistedHelix » Mon Jul 30, 2007 5:02 am

Nati, You've had some excellent answers and advice here, and it sounds to me as if you've got a good understanding of the situation anyway, but the fears in your heart have blinded your mind to what it knows already: the chance of needing a wheelchair is relatively small; MS societies and most participants on a forum like this are a self-selecting group in that those who are living a "normal" life generally don't take part, and if you can, it's best to try and live in the moment and enjoy what you can – if you worry too much about what tomorrow may bring, that takes the pleasure out of what you CAN do today, and that way MS really has won.
And stop criticising your own English: it's excellent!

Dynamo: stop lurking and keep posting! I'm sure there are many newcomers to MS who stumble across this forum and are perhaps put off when they read about some of our symptoms: they need to hear more voices like yours; you give hope to everyone.

Bob: wise man, eh? So what was it like all those years ago, you know: on a camel in the desert, following that star?

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Post by amalisa » Mon Jul 30, 2007 6:04 am

but the fears in your heart have blinded your mind to what it knows already: the chance of needing a wheelchair is relatively small
Twistedhelix, you got me. Now I just have to convince my heart of what my mind knows already. It's not the wheelchair, I fear, by the way. I never wanted to hide of adversity (and am very bad in denial too) and that is probabely, why I confronted me with the people in the MS society.

"I hope for nothing. I fear nothing. I am free." Thit is the state of mind that I would like to achieve, but it's a hard one and a question of age and life-experience too, I think.

I sound much less negative than in my first post, don't you think? I owe this to the people in this forum :) .


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Post by Lyon » Mon Jul 30, 2007 8:01 am

TwistedHelix wrote: Bob: wise man, eh? So what was it like all those years ago, you know: on a camel in the desert, following that star?
Hi Dom,

Although I was part of that particular desert trek, I'm a little embarrassed to admit that my job was to clean up after the camels.

My wisdom came after that. I haven't applied for similar employment since! Well, fatherhood is similar but the "boss" wouldn't let me quit that job :twisted:
amalisa wrote:But when reading about all the complications that let say a virus-infection like measles can have in an adult person,I really am not sure if I want to press the "all reset" button.
I'm glad you brought that up because I neglected to. Most childhood illnesses are a lot harder on adults and more dangerous. I'm not sure that "rebooting" is ever going to become the mainstream way of handling MS but I think we stand to learn valuable lessons about the MS mechanism from these studies.


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some more on personal experience

Post by AllyB » Mon Jul 30, 2007 1:01 pm

Hi Nati

I have been following this thread since you first posted, and I will start by reiterating what the others have said: what you feel is entirely normal and you will work through it - already your posts have changed a bit in tone! And your English is excellent.
The point others have made about this disease being so unpredictable is so true and I will share a little of my history in support of this, if I may?

I was diagnosed with ms in 1999, but put on no treatment. I was 34 and had just finished chemotherapy for cancer (which may have suppressed the ms a bit as I had vague symptoms pre-dating this). I had very minor relapses which required no treatment and had an EDSS of 1-3 untill Nov 2006 when I had 3 bad relapses in rapid succession. I have more MRI scans (more enhancing lesions), lumbar puncture again (positive) amd IV steroids - three courses. I was put on Avonex in February 2007, and although the side effects are horrible, I have stabilised. My Edss was 3 and is now 5.
My first son is 6yrs old and my second is 4ys old. It was a bit of a gamble to have them and I worried about being around for them (I have 2 health strikes against me - ms and cancer), but I regret nothing. They are a huge blessing and give me motivation to keep fighting. Everyone's life is uncertain - they are just mostly unaware of it! I think that I am a pretty good mom - I waited so long to have them, they don't lack for love and attention and are great kids - I might not be able to run with them, but I can do a lot of other things with them and that is what we concentrate on - kids really just need attention and love.
I have 2 bachelors degrees and a masters degree (achieved after diagnosis). I am a director of a large healthcare company and I still work full time (although I am currently re-thinking that - I am reluctant to cut down). In terms of changes because of ms, I don't travel as much for business as I used to as I find it very tiring and I also hate to be away from my kids. I also have to drive a car with an automatic transmission now, no more "stick shift/manual gear box, and freeways confuse me bit, but I still drive myself and my kids everywhere we need to go. I struggle to write because my fine motor skills are not so good, but I can still throw a ball for my kids. Other than this, and needing more rest than I used to, life is pretty much the same when you get down to fundamentals. I have an awesome husband and a great support system, which helps enormously.

Getting used to certain limitations is frustrating and contemplating the future can be very scary, but I want to be able to look back and feel that I lived as well as I could, and in that way this disease has some positives for me as most people are so unaware of the daily blessing of just waking up and having good people in your life. Ultimately, I would rather regret something I did, than something I didn't, do!

I don't know if any of this helps, but just know that you are not alone in this, there is at least some hope for future treatments, and life can still be good. We all have dark times and there is no shame in seeking help either in the form of therapy or medication if you struggle to find your way out - most of us have been down those roads.

Last edited by AllyB on Mon Aug 20, 2007 12:59 pm, edited 1 time in total.

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Post by Muu » Tue Jul 31, 2007 9:37 am

Hi guys.
Often we only hear the negatives of ms. I can't argue that there are many positives but I wanted to share a bit of my history with you. I am now spms and my main problems are to do with this blinkin limp that has crept up on me. My balance isn't great either but i have had this horror for 22 years my first symptom being optic neuritis aged 20. I say this not to gloat but to redress the balance a little as to the course this can take. I don't think i can congratulate myself too much either - I try not to gain weight and try to exercise a little as it helps with my mobility but thats about it. I do get down sometimes but if anything my ms is a constant reminder to take nothing for granted. It has made me try to get the most out of each day.

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Post by amalisa » Wed Aug 01, 2007 10:00 pm

AllyB, Muu

Good to hear that life continues to be good, in some way. The last two weeks were the worst I had, since I heard about my possible diagnosis. But it looks, my mood is better today. I just do my best and continue what I have in my life agenda. It is very likely that I will have to change some points or make things different, but I will do my best to make the time, that is given to me on this planet, the best possible with "my moody lodger" MS.

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