FND Diary Vlog-Blog

[medsoph]

Well I'm not sure if this is a good idea or not but who knows, something good might come of it somewhere or it might help someone in some way. I decided to start a blog/video blog to document things that are going on. Maybe if I vent there it might help my brain get a little less tangled and prevent me ranting on about it to friends and alienating them. I've just come to the point where there is no way I can explain things to some close to me, it ends up with me feeling like a pleb.

Anyway, here it is: fnddiary.blogspot.co.uk/

Eeep!

[kotovasv]

Hi, I have read your blog - what a scary experience you had, my God. I wonder, if you tried to google Sneddon's syndrome - it is what Bridget from fndhope had found after a very similar experience - it's a vascular problem leading to transient neurological breakdowns and strokes, too.

[medsoph in reply to kotovasv]

Hey, thanks for taking the time to read all my rambling :). When I saw the GP yesterday she said that she thinks going back to the vascular side of things seems to be more sensible. She's going to look into Sneddons and has asked me to see if I can find out more information and email her as they don't get a lot of time to research. So I guess that's what I should do today. I'm still waiting on my APS results.. It's funny though, Sneddons has been suggested to me by a couple of people now and yet no Drs seem to even think of something like that :/

x

[kotovasv in reply to medsoph]

Oh, boy - patients teaching doctors, where do we end up... At least she is reasonable enough to ask you to e-mail her the information - that means she admits she might not know something, that's so unusual for a neuro. Good luck!

[medsoph in reply to kotovasv]

No no, it's not the neuro.. she seems to have severed all ties just because I couldn't afford to pay for the referrals to her buddies in the same clinic as her >.>. It's my GP who's actually trying to help me. I'm just so tired of all this :(..

[kotovasv in reply to medsoph]

Oh, right, you mentioned it was your GP - I just messed the things up Well, I actually can afford paying, but I was dumped nevertheless - because I have something they have never seen and never read in their medical books, something that "should not be". I so much understand your tiredness, I myself am terribly exhausted of all the ordeal. Yet, I feel it so not right just to actlessly watch my body deteriorating.

[1fnd Partner Administrator FND International FND Hope Volunteer]

Sorry I have not had time to keep up with every one. Thank you Kotovasv for mentioning Sneddons. Medsoph I saw your legs and they are a tall tale sign of Sneddons. Dont be disappointed if your APS comes back negative. Some do and some just dont. Has your blood been checked for clotting time test / INR? It needs to be checked how thick it is and how quickly it clots. My GP is the one that helped me get most of my tests done and then I was referred to a hematologist where I was officially diagnosed.