I wonder, could it be BFS?

[DustyKat]

OK, so a few weeks ago I posted about Roo and these cold shivers she gets, the kind everyone gets but hers are frequent. When she went to the GP he didn't know why she was getting them and referred her onto a neurologist.

She saw the neurologist and he didn't have an answer either so ordered a battery of tests. She has had 8 vials of blood drawn, she loved that - NOT, has had an EEG and still has an MRI to go. She goes back to the neurologist in about a month.

Anyway last time she was home I was asking when she gets them, are they worse as the day goes on etc. So between us we have been surfing the net a bit and today she emailed to say she thinks that BFS (Benign Fasciculation Syndrome) fits her symptoms pretty closely.

I can't find anything that suggests it could be a side effect of Imuran but interestingly it has been described as an autoimmune dysfunction, not a lot of information on it though.

I wonder, could it be an extraintestinal manifestation of Crohn's or another autoimmune disorder she has in it's own right. Then again Mr Google might be misleading me. :shifty-t:

Thanks for listening guys, sometimes it's nice to think out loud.

 

[Dexky]

I don't know what it (BFS) is Dusty...but I like the sound of the first word in it. The site I looked at did say that stress is a factor in the frequency of the "chills". I know you had brain-stormed about that with Roo.

Most of all, I know she is one lucky girl to have you for a mom.

 

[Keona]

Is it twitching or chills?

 

[DustyKat]

Awwww, thanks Dexky. :blush

Hey Keona, They aren't chills, more like a twitch I guess. If you are familiar with the saying, "someone just walked over my grave", when you get those cold shivers down your spine, well that's exactly what they are.

 

[Astra]

Hi Dusty & Roo

I've never heard of that!
here read this
http://answers.yahoo.com/question/index?qid=20081119185324AAxoVUr

just like what you described!
xxxx

 

[DustyKat]

Sorry Joan, it's taken me a while to get back to this one. Thanks for posting the link for me, I really appreciate it.

Roo has had her EEG and various blood tests and everything culminates this week with an MRI tomorrow and then back to the Neurologist on Thursday. I am almost positive that everything will be fine but try as I might I can't stop thinking and worrying about it, I guess it's because it's the first time I won't be with her while she goes through all this. Hence the black dog has made himself comfortable on my shoulders which isn't like me so I'm hating it with a passion! :ymad:

Signing off as,
Not good to be around Dusty.

 

[Dallies]

My thoughts are with you dusty and Roo, embrace the tests, they'll get to the bottom of it. And it's good to be around you Dusty and I'm sure that big black dog will runaway soon. (especially with that mean looking cat eyeballing him)

Masive hugs your way sweetheart xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Astra]

Aw Dusty sweetie!
don't suffer in silence hun, not a good thing, we're always here for you!
try and relax, everything will be ok, I'm sure. Roo will be in safe hands
big hug your way
xxxxxxxx