Difficult decisions

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Wonderfulworld » Fri Feb 08, 2008 4:52 am

Hi Punchy
hope you get on well with your MS consultant and that they help you make a good decision.

I forgot to add in my post above that for the time period I stopped Copaxone when we were trying for a baby, I took a good few supplements - alpha-lipoic acid, N-acetyl-L-carnitine, high dose vitamin B complex, evening primrose oil. I made sure to do regular pregnancy tests at the end of each cycle so that I could stop these supplements the minute I was pregnant.

It took me about 4 months off Copax before I conceived and although RedSonja says it may stay in some people's systems longer, I definitely was feeling my MS starting to stir into action again at the 4 months stage - though everyone is so different you may not have that. Once I got pregnant MS died down again. It's not totally quiet, but my speech, verbal fluency, slurring, fatigue (before 6 months pregnant!), and walking speed all improved.
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Postby Lyon » Fri Feb 08, 2008 7:21 am

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Postby Wonderfulworld » Sat Feb 09, 2008 11:51 am

Hi Bob
well I don't have much progression at all, but I do have some residual symptoms.

Some of those symptoms are permanent (right-sided deafness, tinnitus in both ears, right-sided weakness especially leg, "foot drop", less than optimal balance).

Then some are transitory symptoms that I have experienced for the last few years too- temporary blurring vision or visual disturbances like coloured spots or greying out of vision in my right eye, bladder frequency.

I have experienced all the permenant symptoms right through the pregnancy, sadly they are not leaving me anytime soon! Some of the transitory ones have come and gone during the pregnancy as they normally would.

I have seen a huge improvement in my verbal fluency, lost my slightly slurred speech, and my walking speed had really improved before I became heavily pregnant.
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Postby Lyon » Sat Feb 09, 2008 2:50 pm

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Postby Wonderfulworld » Sun Feb 10, 2008 10:59 am

but by saying "I don't have much progression at all" do you mean that you have experienced ANY progression during pregnancy?


No problem! - to clarify, I've had no progression during the pregnancy at all.

But Bob to put that in context I've had NO progression at all for the last 4 years - in fact my stamina, spasticity, fatigue, bladder, speech, writing etc have all improved during that time period. - not all have totally gone, but certainly have improved. Pregnancy has improved some symptoms even more.

I had one very severe relapse 10 years ago that did a lot of damage and much of the permanent symptoms I have stem from that. I dis-improved further over the next 5 years, but then I stopped getting noticeably worse and even improved in the last 4. Perhaps invisible damage has been happening though....?
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Postby Lyon » Sun Feb 10, 2008 2:15 pm

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Postby Punchy » Mon Mar 03, 2008 4:12 pm

I realized I forgot to update, for those who are interested.

My neuro appointment went well; my disease is "stable". However, it turns out my feet are permanently damaged :( . I was very surprised by this, as I was convinced sensation and reflexes had returned. So I guess Lyon has a point with the funhouse mirror perceptions.

Anyhow, the feet thing kind of freaked me out so I gave in and agreed to two more months of Rebif, then I can go off of it and start preparing for pregnancy. My neurologist was very excited and supportive, and even said "pregnancy is far better than any Rebif".

I'm still suffering from the Rebif, I hate it so much. My Dr. actually said the side effects are a good sign that the interferons are working, though, and the fact that there is a light at the end of this tunnel makes it all so much easier.

Now I begin my research into the elusive MS pregnancy and breastfeeding stats. Even my neurologist didn't have a whole lot to offer about breastfeeding.
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Postby Lyon » Mon Mar 03, 2008 4:30 pm

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Re: Difficult decisions

Postby NHE » Mon Mar 03, 2008 7:49 pm

Punchy wrote:Anyhow, the feet thing kind of freaked me out so I gave in and agreed to two more months of Rebif, then I can go off of it and start preparing for pregnancy. My neurologist was very excited and supportive, and even said "pregnancy is far better than any Rebif".

Now I begin my research into the elusive MS pregnancy and breastfeeding stats. Even my neurologist didn't have a whole lot to offer about breastfeeding.

I posted some links to a couple of published studies in this thread. I hope that you can find the information helpful for you.

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Postby Punchy » Tue Mar 04, 2008 10:16 am

Lyon, I mean studies about how breastfeeding affects the progression of the disease; if there's any evidence of a decrease in post-pregnancy relapses in mothers who breastfeed, etc.

NHE, I already read those eagerly when you first posted them, thanks!
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Postby Lyon » Tue Mar 04, 2008 10:34 am

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Re: Difficult decisions

Postby NHE » Tue Mar 04, 2008 10:57 pm

Hi Punchy,
I mean studies about how breastfeeding affects the progression of the disease; if there's any evidence of a decrease in post-pregnancy relapses in mothers who breastfeed, etc.

Those papers were all I had found on pregnancy and Ifn-B so far. I realize that they do not cover post pregnancy effects. I know that breastfeeding seems to help the baby from developing immune related disorders. I'm not sure how it effects the mother with relation to MS progression. The general advice, if I remember correctly, is to avoid Ifn-B during breastfeeding.

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