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rachy

Heeelp please ..spasms are killing me!

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Jayneanne

Hey Rachy,

Sending loads of hugs and love and luck from over the sea

Hope all goes well and they at least reach a conclusion of some sort and get you on meds that work!! :you-rock: :you-rock:


Jayneanne

We make a Living by what we get, we make a Life by what we give

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patg

All the best for today Rachy I hope things are better sometime soon. :you-rock: Pat

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Lindyloo
All the best for today Rachy I hope things are better sometime soon. :you-rock: Pat

 

 

Hi Rachy

 

Thinking about you today....With you in 'Spirit' :you-rock:

 

:hearts: Lindyloo xxxxxxxx


LindyLoo xx

" This moment will pass " (Bono U2)

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Teen

Good Luck Rachy, let's hope you get it all sorted. Especially the spasms as they don't sound good.

 

Take care, and let us know how you get on.

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Michelle

Only just signed in. so I reckon you may have been there and got back. Hope it went well for you.

M x

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rachy

Thanks guys x

 

omg my leg feels worse after all the poking and proding and walking up hill to the neuro outpatients dept .. grrr!!!

 

my mri did not show anything in paticular ...did not see my usual neuro so had to go over it all from the start he saw my foot in spasm and looked puzzled so called in another neuro to take a look ..they did the pin test and reflex test again i could not feel pin in right foot .. had weakness in right side .. arm and leg.. he then looked really concerned and rang the big boss as he calls him my usual neuro Dr Llewellyn ... they have taken bloods and want me to do a 24hr urine sample ?? then im back on 12th august to see Dr Llewellyn..they said they might refer me for further testing from there and LP ..

 

I could have cried when they looked puzzled .. i told them could they give me anything else besides the baclofen and he replied not until you see Dr Llewellyn.?

 

So still in same Limbo land as ever!!

 

Rachy xx


.....................................

 

Rachy xx

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Michelle

Oh Rachy. Poor you! I do feel for you. It's such a rotten place to be and now you have to wait for an L.P. They may have looked puzzled,but they would have an idea of what to dismiss, and what to put a question mark over. What bloods tests did they carry out?

M xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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linds

Hi Rachy,

Keep going till 12th when you see head man sorry about pun!. Good you are not being kept waiting for weeks. Some of us have to live in Limbo land longer than others. If you are to have LP there is loads of advice here from those who have gone that route. I have always resisted but looks like I amnow heading down that road too. Love, Lindsxx


Lindsx

 

 

 

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rachy

Cheers guys ... im really upset once again at the royal gwent hospital as i had to walk 25 mins around the hospital on a crutch as there was work being done and i could not get thru to dept i needed and they did not have a spare wheelchair by the time i got to the dept i was dragging my foot crying...

 

Mish i dont know what bloods i could not make out what he wrote exept summut to do with bone structure??

 

I think i will try and speak to DR Llewellyn tomorrow myself to see whats be arranged ...

 

He even asked if my bladder was working ok after i had the urodynamic results stating neurogenic bladder and that theres nothing they can do for me?? he obviously did not look over my notes before seeing me..

 

He did say if things got worse they would refer me asap.. i might just turn up at the Heath hospital where my neuro is based.. :you-rock:

 

It also frightened me when he told me not to come straight off the baclofen as it causes fits.. wish i was told this before i started taking it.

 

Rachy xx


.....................................

 

Rachy xx

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Gaynor

Oh dear Rachy, sorry to hear about your predicament. Yes ring the man in the know if you can't wait to find out exactly what they're gonna do next with the tests.

 

For now take care & rest up after today and it's trials.

 

Gaynor x

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linds

Oh Rachy,

 

Had a look and that is quite a situation with your foot. Hope you get some answers soon Hug Hug xx Linds


Lindsx

 

 

 

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Gaynor

Ooh Rachy that looks very unpleasant and painful and I just hope you don't have to continue going through spasms for much longer without effective help.

 

Take care,

 

Gaynor

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Shaz

OMG Rachy,

 

Had a look at your youtube video and really feel for you. I wonder that you don't feel more angry than you do at the shocking lack of assistance you experienced at the hospital!!!

 

You got my sympathy :rofl:

 

I hope you can pester them into speeding up the process.

 

Love and hugs,

 

Shaz x


~~~~~~~~~~~~~~~

Shaz

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Michelle

Hi Rachy,

What I also noticed from the video that you posted was the colour of your feet. They looked reddish/ blue. My right foot bends in just like yours. The foot is like this on a permenant basis, and occasionally goes into spasm. The only thing that helps me, is to keep my foot as warm as possible, and yes! it can mean socks in summer. It doesn't cure the damn thing ,but it makes my foot a little more comfortable. Unfortunatley, no pills have helped. My neuro refers to this as 'Inversion Posturing' basically a medical term for my foot turning in :rofl:

I would like to think that they will send you for pyshio to help manage this. I am suprised that they sent you away without giving you something to relax your foot. I mean how much can you up the Baclofen by? My neuro actually told me it's not worth taking pills if they don't work for you. Have a word with your g.p to see if he can suggest something else to take. TRouble is at this stage the g.p might have to have a chat with the neuro - hopefully this will not be the case for you.

LOve

M x

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rachy

Cheers Mish ..im on the max dose of baclofen plus they keep giving me stronger diazepam but all that does it make me dopey i got 2 kids to look after and i dont like them seeing me drugged up to the eyeballs.. im taking tramadol and co-codamol for the pain but that dont last long ..

 

I felt so stupid this morning im so tierd i had no sleep last night but gotta get up due to kids being off school.. i rang Dr Llewellyns sectretary and told her im not happy with the way i was treated yest and i cannot go 3 weeks like this i burst into tears on the phone i had to wait a minute to compose myself .. she says Dr Llewellyn is in this afternoon and she will try her best to get him to call but as from tomorrow he is on leave until the 12th august ... *im praying he will ring* i feel really silly i cried and could not get the words out... omg im 32 i sounded like a child.. im tierd frustrated and in allot of pain ..i feel that the appointment yest just made me worse ..2 neuro's watched me walk *dragged my foot* out of there with no answers just "wait to see the boss"

 

My mum came over to visit and sister in law they both left my house in tears ... my kids dont like it and my youngest is so upset im finding it a struggle to look after them poor buggers 6 weeks of hell i cannot drive or walk them anywhere i feel so guilty.

 

 

Rachy xx


.....................................

 

Rachy xx

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Vegged Out
Shirl

Rachy, my dear, poor you - but first, your kids will survive and learn to accept you and love you heaps - i promise that as was often ill throughout summer when mine were home so relied on friends to take them out once a week

 

your feet look poorly and i too am now praying that you get the help you need - but do put socks on as Michelle is right, these things always worse when cold and we do not feel that cold when feet in spasm

 

let me say here once: am now using Pete's laptop in my lap in lounge - have become v unwell and now using wheelchair indoors - so no punctuation and thank God for Firefoxs spellchecker

 

love to all



Shirley  "one day at a time"

 

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Hezza

Shirl & Rachy - thinking of you both and hoping that this passes soon.

 

Much :eep::rofl:


Life is short. Eat dessert first. Jacques Torres

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linds

Love and hugs to all friends here who are not well right now. Lindsxxx


Lindsx

 

 

 

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Lindyloo

Dearest Rachy

 

I am sooooo annoyed with the way you were treated yesterday. I found doctors freaked me out with there silly puzzled looks.2.. Some doctors have not got a clue about patients feelings and how worried we are..

My own experiences were a disgrace also....... patient care goes along way!!

One thing i have learned is Rachy dont be afraid to cry, speak up and let them know its not good enough... I hope that neuro doc calls u back...

The end of my journey to ben diagnosed was to pay for a private appt to c neurologist as a one off.. as in Ireland we have only 5 neuro's in the whole country (since increased slightly) waiting time on NHS is about 6mths to see Neur.....(nuts eh)...ya see my hospital were unable to read my mri scan...they also wanted me to go for LP which would take another few months for that to be done. He diagnosed me straight away and told me i didnt need LP...He was a lovely neuro.. and explained it all to me..

 

My arm and left hand went like that last year... it kept moving itself and jumping and going really tight...like having your blood pressure taken too tightly.... This moment will pass i promise you that...

Dont be afraid to call that doc back and let him know how you are feeling ...

 

I feel like shite at the moment 2....

Big hugs lovely lady

Lindyloo xxx


LindyLoo xx

" This moment will pass " (Bono U2)

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linds

Hi Rachy,

Just to say I hope he rang you! xx


Lindsx

 

 

 

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rachy

no phone call surprise surprise .. i tried ringing at 3pm and answer phone was on .. thats it 3 weeks to wait omg omg OMG arghhh!!!

 

 

Phoned my GP and she says she cannot change any meds without Neuro's say so??

 

Cheers guys for all your support

 

xxx


.....................................

 

Rachy xx

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rachy

OMG after giving up all hope i recieved a phone call at 7.45pm off my neurologist ...he rang me in his own time after his shift .. im in shock! maybe there are a few good doctors still out there. He was so kind and was on the phone for at least half hour going over everything with me and said i dont want to go on my leave thinking your in a bad state of mind. *if he was here i would have kissed him* i feel like a weight has ben lifted just from that call...He said we will get to the bottom of this i am not the type of doctor to give up ...

 

Maybe i will get a little more sleep tonight .. in between the bloody spasms of course lol

 

 

:rofl:

 

Rachy xxxxx


.....................................

 

Rachy xx

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Lindyloo

Hey Rachy thats brilliant and i am really delighted that he rang you...So good to see a doctor been nice. I am sure he will get to the bottom of it and sort it all for you...keep da faith girl..

Well done for phoning him...

Hope you have a nice sleep tonight...

love lindy loo xxx :eep::rofl:


LindyLoo xx

" This moment will pass " (Bono U2)

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linds

Fantastic news Rachy. He seems a lovely genuine man. You are very fortunate to be his partient and I know you will appreciated what he has done by phoning. Love Lindsx Night Night God Bless


Lindsx

 

 

 

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