The wanderer returns

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The wanderer returns

Postby MrsGeorge » Wed Sep 01, 2010 5:56 am

Hi - sorry I have been away for so long - I disappeared into a cloud for a while. I have been meaning to come on here and somehow keep not making it.

I have reached a point where I am having pretty much constant stuff - I'm not sure that remittance exists. I seem to have a set of symptoms that crop up as and when. They might last a few hours or a few days or a few weeks. Is this normal? People seem to expect me to have 1 thing and then have it last a while then go away. I seem to have a handful of stuff that cycles along with the ever-faithful balance problems, wonky legs etc.

I'm actually quite content with life but I never seem to understand what is happening with the MS. I am considering going back onto Copaxone and would appreciate some advice. I was on it for a while but stopped because I got pregnant. I didn't go back on it because I wanted a baby. That is no longer an issue now but I don't know whether I have missed my window? The MS nurse has been quietly mumbling the words 'secondary progressive' and I have not been able to really walk unaided for over a year now. I have been using a chair outdoors for this long.

Sorry for the essay. What do you guys think?
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Postby Mirry » Thu Sep 02, 2010 5:49 pm

Hi there

I can't really comment on your symptoms as I am new to this and don't have any right now. I was tentatively diagnosed in 2006 and positively diagnosed this year. A fluke really as I went in with migraines and came out with 'you have MS"

It is a good question though about " have you missed your window" This is one of the questions I want to ask when I go back to look at all the test results. Right now I feel great and don't want to invite MS in by starting injections and when the symptoms do rear their head, be at a stage where my body may or may not of gotten used to the medications. I am really interested in looking at alternative therapy and have learned a lot about vitamin and mineral supplements. I am just waiting for another full blood panel so I can see where I am deficient and try and make things better that way.

My specialist wants me on Copaxone too, but right now, I cant make that decision. Did you feel better when you were taking it? Did you try any alternatives instead or as well as?

I think everyone has a different journey with MS and you are the best person to know your own body. It's really difficult sometimes to know what the best thing to do is. I am sorry I don't have any answers for you, I dont have enough experience with this MS, but I am sure you will make the right decision for you.

I wish you the best of luck

Mirry
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Postby Wonderfulworld » Fri Sep 03, 2010 4:17 am

Mrs George, a HUGE welcome back :D
Sorry to hear you're in the 'twilight zone' as I call it, where you just never feel like you're getting a break from MS.

Has the MS nurse got any alternatives for you than Copaxone?
Perhaps it would not hurt to start back but in my case I found it took 6 months before it started working. [/i]
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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby MrsGeorge » Mon Sep 06, 2010 2:14 am

Hi

Unfortunately copaxone is my only option, I can't have interferons. The MS nurse spoke to my consultant who is keen for me to go back on it. I'm just waiting for the delivery and then the fun begins again! I'm working on the nothing to lose theory since stuff has been pretty much constant.

I don't really mind being stuck in the twilight zone - it's just become part of life now and on the whole life is pretty good. It would just be nice to know from one day to the next whether I can get from the sofa to the bathroom without falling over! I have so many bruises, it's almost laughable.

Has anyone tried oxygen therapy? There are some people I know who swear by it.
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