Secondary progressive??

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Secondary progressive??

Postby MrsGeorge » Fri Nov 27, 2009 10:47 am

A you know I have been trying to get re-housed and the MS nurse hs written a letter to support my request. She sent a copy to me and I was a bit shocked to see that she had written that in her opinion I am borderline secondary progressive. That is fucking scary.

She has never said anything like that to me but I have been using a chair since august on and off. Have never fully 'remitted' from a relapse in well over a year now, maybe 18 months. I have just had another relapse as I lost my baby quite late and a combinatoin of losing the baby and the general aneasthetic for the D&C triggered it. My balance is awful, I can't pick up my legs and walking is pretty difficult.

It's just a very scary and upsetting thing to see. I don't know if she means it or if she is just writing it to help. Either way I need rehousing as I am no longer safe on stairs and can't shower withoiut my husband.
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Postby LR1234 » Fri Nov 27, 2009 10:58 am

Mrs George, I am so sorry to hear about the loss of your baby, that must be so hard to cope with let alone dealing with the MS.

Nurses/Dr's I think make judgements and they don't really know what classification you are with MS. Heck I don't even believe in the classifications as people have managed to heal themselves from SP/PP which is meant to be impossible. I know myself that I fit into RR/Benign and Progressive MS so please don't let what the nurse has written upset you further.

If you want to hear of a story of a lady who managed to overcome SP MS please read about Terry Wahls. The advice she gives on nutrition is great plus she uses some electrical stimulating machine which she swears by.

Have you checked out the CCSVI board yet?

x
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Postby lyndacarol » Fri Nov 27, 2009 2:21 pm

Mrs. George, I too am so sorry to hear of the loss of your baby. I would like to help you through this VERY difficult time; but, alas, I feel that, in myself, I am helpless--you are in my thoughts and prayers.
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Postby whyRwehere » Sat Nov 28, 2009 11:46 am

:cry: Sorry, it is so hard.
You have lost 2 babies now, have you been tested for Hughes Syndrome? Miscarriage is one of the symptoms. The doctor who discovered this "thick blood" illness is located in a hospital in London. It might be worth you looking into, anyhow.
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Postby MrsGeorge » Mon Nov 30, 2009 3:35 pm

Actually that's 5 babies lst. I will investigate Hughes syndrome. Thanks
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Postby lyndacarol » Mon Nov 30, 2009 8:05 pm

In addition to Hughes syndrome, ask some questions about Polycystic Ovarian Syndrome (PCOS) -- I believe it can impede pregnancy.
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Postby MrsGeorge » Tue Dec 01, 2009 7:30 am

Thanks. I do have PCOS but only mildly, they reckon.

I checked with the MS nurse specialist and she says that they do routinely screen for hughes as part of the elimination tests when diagnosing. I would have to check with my GP to be certain but they should have ruled it out before diagnosing.
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