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Update - Inflammatory Neuropathy

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Old 10-29-2015, 03:49 PM #11
bluesfan bluesfan is offline
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LouLou

Sorry to hear of your lack of support from your sister and BIL. That's just plain mean. You don't need the stress of having to put up with that on top of your pain. I hope you didn't let her take your diagnosis letter - she has no right to do that let alone show it to another person or even to discuss your case with another medical person without your consent, Grrrr

I'm glad you have a supportive husband and hope you get to spend some quality time with him and your daughter.

All the best for your application for the IVIG therapy.
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Old 10-29-2015, 04:23 PM #12
St George 2013 St George 2013 is offline
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Heart Hey there LouLou
Quote:
Originally Posted by LouLou1978 View Post
Just to say thank you to everyone for all the support. While going through this for the past year I have had a horrific experience not just with the SFN but from 2 particular members of my family. My sister and her vile husband. I was told by my sister on a number of occasions that her and her husband thought it was ridiculous that I was seeing a professor in London, and that her husband thought it was 'funny' and that her husband had looked SFN up on the internet and it WASNT painful. When I actually got my diagnosis, she came round to my house and snatched the diagnosis letter out of my hand demanding that she take this to be photocopied to show her Dr. She was ranting and raving at me infront of my 3 year old. Shouting at me in my hospital bed after a bodged lumber punch, I now have nothing to do with them and never will. Luckily my husband has been great so am blessed to have them
That is a pretty mean sister you have there !

I have severe SFN and from the info I get on the internet it's the MOST painful of the neuropathies. Just sayin'

I have never said that to anyone on here because we are all suffering and no one knows what another goes through. But for your purpose it's a good comment.

Glad you no longer have to put up with her or her vile husband.

Take care.

Debi from Georgia
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Old 10-30-2015, 11:59 AM #13
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Here's a link for your sister. Prevention Magazine rated PN among the 10 most painful conditions you can have. (Although they just list PN in general, their specific description matches SFN pretty much right on)

http://www.prevention.com/health/hea...cal-conditions
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Old 11-01-2015, 03:04 PM #14
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Thank you Ragtop and everyone, I think I should print that document out and pass it onto my mum to pass to her as I don't see her anymore.

I will update you when I get some news. It is very frustrating in the UK , not sure how often the panel meet, so not sure how long it will take.
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Old 11-01-2015, 03:12 PM #15
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Lightbulb
BTW.. there are 4 types of neuropathy listed on that link.

Laymen often don't know the names so would overlook that factor.
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