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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi Just needed share hubby got 2 clinic appointments over next few week Orthpeadic surgeon for charcot marie tooth discease (a form of muscualr dsytrophy for those not familar with name)follow up review,please no we pray no more operations especially not this year or next. something doesnt seem right with his hands,trying wokr on getting him ask consultant take a look at very least referral to dermyatology be good for him they tend get skin problems.some get hands loss function not that. arthritis been mentioned in ankles. then 23rd Liver 1st follow up after diet,biopsy last spring hes feelign quite nervy lost a good amount,please not another biopsy hoping just s liver scan how do they tell progress of liver i felt bloods would be first thign they will do? taken me all of 4 months to get him to call for appointment after not receiing one. not gloomy down at all just if im distant lately hoping good news prayers,thoughts for postive clinic days for him.  melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 157 Location: TYNE AND WEAR
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Always praying and thinking of you both melly.......Take care, Alison xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Will be thinking of you both Melly. You have both been through such uncertain times. I hope it's good news for him.
Julie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Praying for you and Donovan, Mel.
It is a great worry but I am sure the clinic will assess him well and do what is best for him.
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 259
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Very best wishes Mel, thinking of you both, Jan xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Thankyou all yes-1 can say why a concern hubby has peice bone growing where shouldnt be and says it very sore,xray will show whats going on. hes just ahd such peice removed last year. god in control that as we ben offere chance go back to his homecountry for 3 week fmily visiting holiday october beore start ttc. so till seen surgeon not given def answer for that. liver yes Amanda,thanks hun especially you feelign so rough to reply.hes been incredibley anxiou to point hence takens o long get him cal and funny enough they ahd booked him in just not sent letter. we wait and see what they will do always take bloods thats expected gp has fialed him no follow up no seeing how hes doing at all and his fav gp left. butmay be good thing giving him break from all those appointments. he has tried very hard. anyway i shall be with him supporting. melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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I'll be thinking of you both and hoping the appt goes well.
Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Thank you lyn. 1 week to 1 st one then following week liver 1 yikes. melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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You must be worried, it is such a cruel disease.
How is the diet going with Donovan? Is he feeling better? Mark isn't dieting AT ALL! LOL
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Thanks posting aww yes got him to show me looked at both feet defintely is bone growing where shouldnt oh tiddles not good,but not disaster said he wants it dealt with,which only means 1 thing another operation. heres hoping a less invasive way doing it quick recovery. not his fault. but things pretty rotten for me RA going into steriods worn off stage feel like flu grr been bed rest last 2 days. liver hes done terribly well till last few months. back on track. determined to lose more bless him. ohh marky he can do it,afraid i do have to ask him daily what have you had if not trouble. once hes back into his pattern eating right things he wont need as much asking. still we fighting on. helps for my other half his family encouraging him aswell,as mine also asking him how its going. you asked is he feeling better,liver wise yes alot less hot sweats compared 3 eyars ago he would be very hot sweaty least amount movement. still some icthing at night taking piroton this will be checked by bloods i expect. hes got more energy,few days of looking rather pale but that was more work far to much going on and fatigue from feet problem. hes feelign alot less feet pain,just stiffness from arthritis swelling almost gone completely so not on any medicaton. hes not feeling chuffed as stomach come back so he fighting lose that now. melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi yep This is tomorrow 9.30am hope not an all dayer. fill in tomorrow night. melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Thinking of you both Melly. Hope the appointment went well.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi Julie yes well he had foot xray first,followed by appointment with specialist doctor,consultant not in today. the foot is healing still from last years operation. there is peice bone protuding but not that wasnt there its just the fat pad of skin has moved to sdie exposing bone,there ahs eben a complication from big toe op last year it has shortend bit to much causing the enxt 2 toes to take the 50%pressure that big toe should take. they wont be operating for now as next procdeure can not always have good success rate,pleased with his weight loss and evry pleased hes been able to retunr to sport badminton,gym. was there main goal and that hes still working full time. so a review in 6 months. to eases discomfort when at home orthcotics are to now make him special supported slippers to go along with boots for casual wear,work and trainers for badminton hand made. they will do a lateral xary in novemeber if bone protruding more may remove some of that as minor procedure. for now nothing to be done left foot maybe after had child. very kind doctor examined it all throughly and even dictated letter in front of us for gp. so so tired fatigue me all day i was hobbling about more than hubby.felt at home in crowds of hobblers melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Melly - I'm glad this appointment went well for your hubby and is happy with what they are doing for him. He's got another appointment coming up as well hasn't he?
So sorry to hear that you are still struggling with the fatigue - are you due for another depo soon. Thinking of you both.
Julie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Melly,
Thinking of you both and pleased to hear that your hubbies appointment went well.
How is tiddles, do hope s/he's OK?,
take care,
love,
Barbara XXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Good to hear that things went quite well Melly. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Thanks umm barbara whos tiddles do you mean my kitties,there inky oscar adn sweetpea. well im on cat mother duties to aim for sweetpea to gain much weigh ohh how id love to be end of her being mum to me help me loose weight. so i have to put her sacuer of special food on work top pick her up and she munching away. we did the seperate bowl techinque vest orders special expensive food turned out its same quality as iams so so much for vets recomendation nothing different in it except price anyway inky took to stealing it  and sweetpea stopped eating altogther cartn have that so its sacuer on worktop and covered when inky about.and hes meowing all time for treats which im not giving him. exahsuting. but got till end may for sweetpea tp pcik up at least half stone. yes thanks hubby may end up small op end year and i nearly fainted only gone said he wants other foot done next year when hopefully i be preggy pleading him wait till following year if he can. but if hew ants it done what do i pray i guess. melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Update FRiday its huby liver appointment hes lost 2 stone needs lose another 1 stone. hes very nervy about it so im going along with,gp has not followed up on him at all and now left to work elsewhere! so dont think conusltant be impressed i shall duly tell him that hes ahd do it mostly alone support was good at start but wained off after 5 months. so not a syrpsire hes finding it hard. still il fill in when get back friday. kings is our 2nd home,guys my 3rd lol goodness sounds like im moaning,sorry. melly cuddly cats make my world seem so much more fun
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