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Old 06-17-2013, 05:28 PM
lindylanka lindylanka is offline
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Join Date: Sep 2006
Posts: 1,271
15 yr Member
lindylanka lindylanka is offline
Senior Member
 
Join Date: Sep 2006
Posts: 1,271
15 yr Member
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Hi, There are echoes of things that have happened to me in your experience, except that I was not informed at all initially. To cut it to a minimum I was started on sinmet, three years later had a normal scan, and two years ago (8 years in turned out to have the B12 thing(with additional neuro involvement).

First of all I would like to say, don't be scared of what is happening to you, the B12 looks as though it is helping some, and sinemet at that low dose should not, unless you are very unlucky, give you too much trouble. On the other hand it should be your choice to decide when to take it, given that it is hard to come off, and for some people impossible. So try and let go of the fear, and think about whether the stuff that you are dealing with is manageable or not without sinemet. Ask about alternatives. And exercise as much as you can, which might be hard given the B12 situation. The vertigo thing is awful, and I believe that it is less about PD than B12. If you are stable on two weekly you will have to allow it time, anything neurological heals slowly. You could benefit from sublinguals inbetween. I agree with Muirann on the additional meds, they do not fit into this too well.

Sinemet controlled me for a long time, it i less effective now. I have a hard time trying to work out this strange chicken and egg situation, and the combination of the two conditions is not easy. The cross-overs are too great.

Do you have other auto-immune things going on? I have 3 or 4, and know what I have is hereditary. Do you have loss of parietal cells. It is also interesting, though sad that your mom had MS. I have a first cousin with this. An a grandparent who had PD.

The video that Muirann shared may shed some light on this.

I wish you luck with this. There are vast grey areas, and you will need to do your research, or your partner will. I did read once about something called poly auto immune syndrome that includes both conditions, but there is little research on it. We exist on a spectrum, and finding the best treatment regime is the true grail.
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"Thanks for this!" says:
skcher98 (06-19-2013)