Need urgent advice

For all your questions and experiences of illnesses associated with FM e.g. thyroid, IBS, TMJD etc.

Moderators: perseus, *Lisa*, FluppyPuffy

Need urgent advice

Postby jan8787 » Sat Aug 20, 2011 1:02 pm

hello
iam new to the forum and really need some advice.i was diagnoised with fibromyalgia four years.up untill four years ago i was working and at the gym and had a full life.
when i got fibromyalgia this stopped as i could no longer work.
my life was still fine as i went out and still did things though.
i got married nearly four yrs ago and iam very happy and i have a daughter who is 23 from my first marriage.she lives not far away from us.
anyway last may i got a virus which lasted two months,i do get viruses which dont usually last that long and i get chest infections,the week before this virus finished i couldnt talk properly i was like jerking when i talked and my doctor said this was at tic and nothing i could do and it should go when the virus goes.
it did go and i had nothing since.
last october i was at the bank i felt fine and al over a sudden my speech started to slurry i felt quite tired.i do have a sleep problem and have been seen a consultant at a sleep clinic.i have had this problem for over thirty years and i take half a sleeping tablet a night and i get a certain amount of sleep.
anyway i got back to the car and it eased off and felt beter then drove home.i had another attack which happened a month later,i was out shopping with my husband i felt tired and then week all over and my speech became slurry this lasted about 20 minutes then went off. i had a few more over january and feburary,then in march.
with all of these attacks i was not stressed and very happy in myself.in june of this year this is what happened.

i was at the job centre with my daughter talking to a lady with her about a job we were in the office it was a warm day and i was tired.my daughter is deaf and i was signing to her when i came all over very tired and arms and legs just went week and i slumped in the chair,my speech was slurry and my head was going from one side to another i couldnt keep it up.i knew what was going on around me but could not talk,this seemed to go on for ages but i think it was 20 minutes,everyone there that saw me said i was asleep but i was not as i knew what was going on.i then got up to go out of the jobcentre and my daughter thought i was ok but i didnt feel it.my legs felt that i was going to fall down and a security guard came over asked my daughter if i needed help she said yes they helped me to a chair i couldnt walk proper was very wobbly,while i was there my eyes were open and closed and my head was flopping from one side to another,they got me into a wheelchair and my daughters friend took me home.it took over an hour maybe two to feel ok again.

since then i have had a quite a few attacks sometimes three or four in a day which leaves me knackered and tired.my doctor sent me for an ECG which came back normal,blood tests were normal apart from my ESR which goes up and down.
for the last few days i have been feeling shaky but not had another attack and its been a week.

the symptons are

muscle weekness
head floppy
eyes open and close,and flicking
slurring of my speech
i know everything going on around me but i cant talk.

if someone can get back to me and let me know if this a non epileptic attack.
thank you
jan8787
UKFM Member
 
Posts: 72
Joined: Mon Mar 02, 2009 7:39 pm

Re: Need urgent advice

Postby FluppyPuffy » Sat Aug 20, 2011 1:37 pm

:wave: :wave: Jan, I'm so sorry to read what you've been going thru, and even more stunned that more hasn't been done by your GP to try and find the cause of these attacks :shock: :shock: :swear1: :swear1: :hugs:

You'll appreciate that no-one on here will be able to give you a definitive answer as to what your attacks could be as we are not medical professionals. All we can do is give you advice based on our own experiences and things, I'm afraid :facepalm: :facepalm:

Personally, I haven't experienced things quite like what you've described, so I don't have any advice for you. All I can suggest is that you really need to increase your pushing of your GP to send you for further investigations into these attacks to try and pinpoint their cause. If your own GP isn't much help, then try a different one at your surgery, and if that doesn't help, let them know you're considering changing surgeries to try and find a better one, that might boot them into action :fingerscrossed: :fingerscrossed: :fingerscrossed:

I really am at a loss as to what else to suggest, it could be that you need this investigating from several different approaches to get to the answer you so desperately need and want :grouphug: :blowkiss: :hugs:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Need urgent advice

Postby loubie » Sat Aug 20, 2011 2:16 pm

hi :wave:

if i was you i would tell your hubby or daughter or anyone you may be with
that if it happens to ring for an ambulance, then they will take you in and
you mite then get some tests done

IMO, this dose need looking at and sooner rather than latter
it must be very frightening for you :hugs: :hugs: :hugs:

best of luck with it and hope your sorted out soon
let us know how your getting on :flowers: :flowers: :flowers: :blowkiss: :blowkiss:
loubie xx

As a Public Moderator of this forum my opinions/views expressed are personal and are
no more valid than those of other members and not necessarily those of
UKFibromyalgia.
User avatar
loubie
UKFM Regular
 
Posts: 2491
Joined: Mon Jun 08, 2009 8:57 pm
Location: staffs

Re: Need urgent advice

Postby shazq » Sat Aug 20, 2011 2:27 pm

Hi
Have you put this post up before? If it was not you then it must have been someone else with a similar thing happen to them.

It must be scary for you, like loubie said i would get someone to call an ambulance if it happens again as at least then they will be able to see you and carry out tests asap. Sorry i cant be of any help. :hugs:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
UKFM Veteran
 
Posts: 11449
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home.

Re: Need urgent advice

Postby FluppyPuffy » Sat Aug 20, 2011 3:15 pm

I was looking thru some of the older posts to see if there was anyone else who had posted about having a similar thing Jan. While searching, I can across a very similar post you made in June of this year. Similar replies were made on that one to what you've already received on here. Here's the linky to your previous post http://www.ukfibromyalgia.com/forums/viewtopic.php?f=6&t=10230&p=109248#p109248 Have you been to see a dr to try and get to the root of the problem since you made the post in June :?: :?: :?:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Need urgent advice

Postby jan8787 » Sat Aug 20, 2011 10:44 pm

Hi
Yes I did put a post on before sorry I forgot as memory not so great.
I have seen my doctor about this and a neurologist who said as my EEG normal then it's non epileptic seizures.and only treatment Is to see
a psychologist.I have changed doctors but my doctor is the same as my other doctor and agrees with what he says
about me. the neurologist won't do any more tests, as says it's non epileptic seizures.
I am stressed about this but have not anything else to say to a psychologist.
I just want to know if anyone else has this.
On Friday I had four seizures from 3.45 to 11pm. at 4.46 my husband came home and the door was locked so I had to crawl to the door and managed to open it,we stayed on the floor for an hour till I could get back to the sofa.
if anyone knows anyone who has similar symptoms let me know please.
Thank you.
Jan
jan8787
UKFM Member
 
Posts: 72
Joined: Mon Mar 02, 2009 7:39 pm

Re: Need urgent advice

Postby loubie » Sat Aug 20, 2011 10:51 pm

jan i would still ask anyone you are with to phone for a paramedic

seeing you in one of these, they mite be able to work out what is happening
they will also do all the checks on you and something mite show up when its happening
loubie xx

As a Public Moderator of this forum my opinions/views expressed are personal and are
no more valid than those of other members and not necessarily those of
UKFibromyalgia.
User avatar
loubie
UKFM Regular
 
Posts: 2491
Joined: Mon Jun 08, 2009 8:57 pm
Location: staffs

Re: Need urgent advice

Postby tonydin » Sun Aug 21, 2011 8:33 am

hi jan i agree with the others ,, iv had some very odd felings in my time which apears to be panic/ fibro related ,
but nothing as extream as this , i cant belive no one called a paramdic in the job center??
you need to be in hospilial at the time this is happening in my opinion , so they can get a fix on whats happening , i would be very supprised and concerned if its fibro related or even phsycological
take care jan
tony
tonydin
UKFM Member
 
Posts: 866
Joined: Thu Sep 09, 2010 11:40 pm

Re: Need urgent advice

Postby Ldyalb » Sun Aug 21, 2011 11:51 am

I'm quite concerned that none of the witnesses to these events has called you an ambulance. Any loss of consciousness (I know you were conscious but unable to communicate, so really to an outside observer you may have been unconscious) should ALWAYS be referred to a Dr - they need to establish why it's occured. You need to tell you friends and family to call an Ambulance next time it happens - I think the Drs at A+E will take it seriously. It must be terrifying for you :hugs:

Unfortunately sometimes when you have a diagnosis of Fibro Drs like to attribute everything to Fibro, that's why we always advise people to see their GP about any new symptoms rather than dismissing everything as Fibro ourselves, just in case it's something else.

I'd reccomend trying a different GP to see if they can refer you to a Neurologist or a Rheumatologist to establish the cause, :goodluck1: - I hope you can find the answer :fingerscrossed:
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
User avatar
Ldyalb
UKFM Regular
 
Posts: 1667
Joined: Sat Nov 13, 2010 6:46 pm
Location: Lincolnshire

Re: Need urgent advice

Postby FluppyPuffy » Sun Aug 21, 2011 12:35 pm

ldyalb, the last post made by the op, before you posted
Unfortunately sometimes when you have a diagnosis of Fibro Drs like to attribute everything to Fibro, that's why we always advise people to see their GP about any new symptoms rather than dismissing everything as Fibro ourselves, just in case it's something else.

I'd reccomend trying a different GP to see if they can refer you to a Neurologist or a Rheumatologist to establish the cause



says that she has done exactly that
jan8787 wrote:Hi
Yes I did put a post on before sorry I forgot as memory not so great.
I have seen my doctor about this and a neurologist who said as my EEG normal then it's non epileptic seizures.and only treatment Is to see
a psychologist.I have changed doctors but my doctor is the same as my other doctor and agrees with what he says
about me. the neurologist won't do any more tests, as says it's non epileptic seizures.
I am stressed about this but have not anything else to say to a psychologist.
I just want to know if anyone else has this.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Need urgent advice

Postby shazq » Sun Aug 21, 2011 1:14 pm

Hi Jan
As i was reading your post it sounded familiar thats why i asked if you had put it up before, if it was not you then i thought it might have been someone else who might have been able to help you.

I can only add to what i put on my first post and what everyone else has said, you must tell someone to call for an ambulance when it happens again, if these seizures are lasting up to an hour then the docs will be able to see you having them if an ambulance is called straight away, this way you will get all the tests carried out in A&E. :hugs:

I have never heard of this happening to anyone with fibro. :hugs:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
UKFM Veteran
 
Posts: 11449
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home.

Re: Need urgent advice

Postby Ldyalb » Sun Aug 21, 2011 2:35 pm

Ah I mis-read, thought she said the GP refused to refer her to a Neurologist which alarmed me.

I haven't heard of this happening to anyone with Fibro before either.
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
User avatar
Ldyalb
UKFM Regular
 
Posts: 1667
Joined: Sat Nov 13, 2010 6:46 pm
Location: Lincolnshire

Re: Need urgent advice

Postby thebryans » Sun Aug 21, 2011 7:55 pm

Hi Jan.
I often go the same as you or just fall asleep mid sentence, even eating my lunch, sometimes I can hear everything around me, others I am totaly out of it, and if I do talk it sounds ok to me but hubby says it comes out all slurred and mixed up,
The doctor says my breathing causes a lot of it, as I regulary stop breathing, on beta blockers for this 3 times a day. and as such have been to the resporitory clinic, and had 2 different sets of tests. the last were on wed this week gone, so am now waiting to see a specialist.
It is very distressing when it happens, I suggest you go back to the docs and demand to be seen by the resporitory team
Hope you get it sorted soon
loraine :goodluck2:
User avatar
thebryans
UKFM Member
 
Posts: 72
Joined: Sun Jul 18, 2010 10:05 pm
Location: stoke on trent


Return to Associated and Other Health Problems

Who is online

Users browsing this forum: No registered users and 3 guests

cron