Autonomic Disorder

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Autonomic Disorder

Postby floss112 » Wed Oct 20, 2010 5:44 pm

Hi - I just wondered if anyone can shed any light......

... my 17-year old daughter has been diagnosed with FM and CFS. She has been seeing Prof J Davies because her FM has been getting worse and worse - she can now barely function and has very little mobility in her legs and left arm. We saw him yesterday and he has said that she is exceptionally ill and has requested an 'ultra urgent' referral to a Prof C Mathias who runs an autonomic unit... apparently Prof Davies thinks that she also has autonomic disorder underlying everything else.

But looking around the site, and elsewhere on the internet, it seems that autonomic disorder is a normal part of the FM territory and just kind of describes/causes some of the symptoms... or maybe FM causes some autonomic symptoms but 'autonomic disorder' is something else?????????????????? :?

Obviously when we get to see him it will become clearer, but I wondered if anyone else has been diagnosed with this, what it means and what the treatment might be? I COULD just wait and find out but am congenitally incapeable of waiting :crazy: , and besides I am kind of worried...

Thanks ...
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Re: Autonomic Disorder

Postby denys » Wed Oct 20, 2010 5:48 pm

Hi Floss, sorry I have no idea what it is either, I'm sure someone will be along soon to help, no wonder you are worried but she is in the right hands and :fingerscrossed: they will get to the bottom of her symptoms and start her on the road to recovery sending you and her heaps of positive vibes plus loads of :hugs: :hugs: :hugs: :hugs: :hugs: :flowers: :flowers: and :blowkiss:

Lets know how she gets on :hugs: :blowkiss:
Denys

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Re: Autonomic Disorder

Postby loubie » Wed Oct 20, 2010 6:54 pm

aw floss i have no idea ???
i do hope what ever it is, that they can sort it out for her :hugs:
sending :hugs: :hugs: to both of you
and wish her all the best :fingerscrossed: that she feels better soon
:blowkiss: :blowkiss: :flowers: :flowers: :blowkiss: :blowkiss:
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Re: Autonomic Disorder

Postby shazq » Thu Oct 21, 2010 7:21 pm

Sorry i cant help either.
You could PM linzworld who is a member on here, i know she see`s`Prof Davis. :goodluck1:
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Re: Autonomic Disorder

Postby ginnie » Sat Oct 23, 2010 5:12 pm

Hi Floss,I don't know if it's of any help but I saw the Neurologist on Thursday and he told me I had "Small fibre and AUTONOMIC neuropathy!Although I have Fibro and CFS I was also diagnosed with type 2 Diabetes in January this year.This can also be the cause of the Autonomic Neuropathy as well as the Fibro.I have numb feet and numbness and tingling up to my knes,I also have the same in my arms and little fingers,difficulty in holding a pen or sewing needles.The Neurologist has refered me (again!)to the Pain Management clinic and I'm waiting for the resukts of MRIs on my neck and spine.I hope this has been a bit of help and that the Specialist your daughters waiting to see can do something to help her.Take care,Ginnie :)
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Re: Autonomic Disorder

Postby floss112 » Sat Oct 23, 2010 5:54 pm

Just wanted to say thanks for your replies :hugs:

We have been lucky and Professor Mathias (apparently very big in the 'Autonomic World' :clap: - which incidentally I keep calling 'automotive', which probably won't win me any friends :crazy: ) has agreed to see her before his usual clinic on Tuesday morning, so I will let you know if I find out anything new...

.... also, don't you have this catch-22 with appointments: if they can't fit you in for a while I want to scream "but that's too long - she can't wait!" :x and if they squeeze you in quickly then it's "OMG - why are they getting her in so quickly... what do they suspect??????" :yikes:

Really should stop with thinking too much!!!! :roll:

:hugs: (gentle ones) to all
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Re: Autonomic Disorder

Postby denys » Sat Oct 23, 2010 8:12 pm

Glad she's being seen so quickly Floss, lets know how she gets on :hugs: :hugs: :flowers:
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Re: Autonomic Disorder

Postby loubie » Sat Oct 23, 2010 9:04 pm

all the best for tuesday :hugs: :hugs:
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Re: Autonomic Disorder

Postby floss112 » Fri Oct 29, 2010 8:33 pm

Hi all you lovely people out there - just thought I would let you know how we went with the very charming Prof Mathias at the Autonomic Clinic....

...As I suspect often happens, she went in diagnosed with two conditions (Chronic Fatigue and Fibro) and came out with two more - EDS III and Autonomic Disorder. What's weirder is that apparently my mother, my son and I all have this EDS III which is apparently a congential condition where your body makes lousy collagen. So far it seems that the rest of us got lucky and just got stretchy skin (I thought everyone skin could be pulled like that :roll:), bendy joints and low blood pressure with a tendency to keel over - it's just Charley who seems to have the bigger problems...

...but it does all seem very confusing how all these things seem to be kind of the same thing - we have been told that Chronic Fatigue is just a description of one of the symptoms of fibro (although some people can have it on its own) and fibro is one of the symptoms of EDS III, and all of them have autonomic symptoms..... chicken and egg spring to mind!

Anyway she's being sent for two days of tests, most of which seem to involve some kind of torture on a tilt table :yikes: but if it all leads to them being able to actually do something that makes things better, then it will all be worth it.....

what I suspect, though, is that it will all kind of lead us around to the same place, where nothing is really making any kind of a difference... still each new day may be the day she starts to feel better, and we've had a few fantastic days over the past week where she felt brighter and it's those times that keep you going....

.... that and :wine: ... speaking of which it is that time, so :blowkiss: to everyone - hope you are all feeling as well as you can, and that something happened to you today which made you smile. xxxx
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Re: Autonomic Disorder

Postby auroura » Thu Nov 04, 2010 3:50 am

Just reading some posts, cant sleep :cry: I am glad your daughter has been seen so quickly, hope tests are useful and want to say big gentle hugs to you all, because this does affect whole families x
Sharon

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Re: Autonomic Disorder

Postby loubie » Thu Nov 04, 2010 7:00 am

so good to know that she is getting some help.
wishing you all the very best :fingerscrossed: that it dose work,
even if its only a little, its better than nothing.

hope mum is taking time out and having a bit of me time :wine: :wine: :wine:

sending lots of :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: your way :blowkiss:
loubie xx

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