uk2

[crystaly]

Hi re your question have I got adx and am i nhs or private ? I do have asort of dx hmm ! bit of a peculiar one as it isnt realy a dx Better explain ! Basically I see an nhs neurologist been seeing the same one for 3 yrs She diagnosed me as having a neurological gait disorder which includes action myoclonus. I wish I had the money to go private because I would but unfortunately can't afford it !  My neuro has said unknown eitology sorry cant spell it ! Had tests three years ago but none since as she just wont do any . Just read your posts and yes it is a really frustrating time ! xx chris

[crystaly]

Hi samantha your welcome and as i said always remeber that change isnt easy and it takes time to learn how to adjust I,m certain he loves you as much as you love him xxx chris uk

[uk2]

Thanks chris for your support and words from a true pro in the marriage stakes that means alot.

Im sure we will ride through it, i love him dearly i just hope he comes to terms that its the illness not me who has made theses changes.

Love samantha

[crystaly]

Hi samantha sounds like your going through a really rough patch and my heart ngoes out to you Big Hugggs !! I think all couples have times where they drift apart when  things that are beyoned their control like sudden illness happen . I truly hope your husband and you sort it out and ride the storm as they say . Lifes not a bed of roses and everyone has their ups and downs so please dont think your the only one. As for being a proper wife whats that !! It takes time to adjust to change !!!
By the way been married 34 yrs been with my fella for 36 yrs lol and yes weve had our ups and downs over the years as well. Becoming ill is a major life change for anyone and it takes time for everyone to understand that you may need help and support! Its bound to be difficult for you at the moment but hold on in their and you will get though it . I think its hard for other people to understand what its like for all of us who suddenly have all these things going o and how it effects the way we feel about ourselves and our relationships .Sorry for the long winded post here !! and in no way have you bored me at all . Take care samantha xxx chris uk

[uk2]

36 years thats great!  Tha t is what married life is all about but i find my husaband finding it hard to cope with his job our three children, he has said we have drifted apart which is sad i cant be a proper wife to him at the moment, but i always thought we would ride through problems like this and im sure will be ok and im sure it want be forever and i will get better i am coping more at home this last few days and getting out more.
They put three things on my dads death certificate but none would of been the cause of death they think he just died in his sleep, i think he was heart broken and had given up.
I was crushed as i am a only child and my parents were my life and at the time my first husband had just left me when i wa s six months pregnant so i didnt cope well. But iv moved on found my faith a new husaband and life is good except this illness but even that has blessing i have grown to know so many lovely people on here and met others in my life that i would never of met if not for being ill.

Anyway iv bored you enough with my life story lol

Take Care
samantha

[crystaly]

Hey don't worry about it just one of those things . Been with my fella for 36 yrs so just glad hes still with me ! Re social services don't know to be honest never tried asking . We manage ok and dare say there are lots of other people worse off than us you know so we just try and get on with it as best we can . So sorry youve had such rough time its awful losing parents ! Must have been really hard for you ! Strange they didnt know what your dad died of thats terrible ! How can they say they don't know is beyond me .
Re your giving up work some things in life you can't help and being ill is one of them . please don't feel guilty about it its not one of those things you can control. Im sure your husband would say that because he  loves you ! Thats what being marrieds all about supporting each other !

[uk2]

Gosh i have the nerve to moan about my problems you poor thing caring for your husband while your ill yourself!!

I used to be a care support worker working in the community with all types of people who just needed extra help can you not get this? through social services people to help with your shooping and housework even just taking you out places?

Praise God he is in remission, i know the pain of living through cancer my mum had cancer for fours year and lost her battle in 1999 and dad died 18 months later from what we dont know to this day.

I will soon have to go on to incapitity benefit which is a lower amont then the SSP my Husband has had to go back into seniour management to cover what i use to earn. So will be working 12 hour days 5 days a week i feel bad about that but i cant help being ill.

Take Care x

[crystaly]

Hi yuk!!! sinus problem sounds awful !! greatest sympathy there . I can take anti inflammatorys either they upset my stomach too much . Re the have I worked since this started the answer is NO! can't walk more than 10 meters without assistance and an elbow crutch !! I had my first episode 3 + yrs ago and the mobility issues havent changed since . I hadnt worked for tow years prior to that anyway because I,m my husbands carer believe it or not Its been aright farce really ! My hubbys has non hodgkins lymphoma , got heart disease and a spinal problem where tumours were removed and serious cognitive problems  so hmm bit difficult sometimes ! We make aright pair though lol Hes in remission at the moment though so alls good as they say not complaining cos hes still with me !!! I actually get dla high rate mobility and medium rate care and Ive got a blue badge . My dla is presently under review so dont know whats going to happen ther. We don't get any help at all from anyone and muddle through ourselves . The system is a minefield !!! I,m lucky really that we got rehoused due to my husbands health problems into a ground floor flat > What system are you talking about health, benefits ?

[uk2]

Hi

Boy this site is so busy this has already been bumped to the next page from yesterday, not feeling to bright today but more energy to write today. The smocking was a big issue for me with the reflux but giving up was a real freedom but i did put on wait but then lost lost two stone through diet and jogging but now since iv been ill its all come back on in a matter of months!

The aloe vere juice tastes awfull but it does help you can put it in your fav drink to drown the taste!

I dont get reflux now so much and dont take the tablets any more mine too i think was the meds i was on too for a painfull shouldrer i had i still find now i just cant take anti inflamotorys at all as it upsets my tummy again.

Also i have a constant sinus problem which makes a dripping down the back of my throat which makes me swallow air then makes me burp and the reflux then starts ( sure you really needed to know that info LOL) so im on a steroid spray for my nose but my doctor want refer me till i get theses problems sorted i get constant ringing in my ears too so load that i have a fan on at night to drown the noise out as silance is awfull.

Have you been able to work since this all started?  I get SSP but its low and i cant work but neither can you get any help i.e disabled badge ( on my reallly bad days i cant walk far at all.) or other help without a dx.

How do you get along with the system. where do you live?

Take care x

[crystaly]

Sorry your not feeling too good . Hope you feel alittle better soon . Yes I think all meds cause you to gain weight whci is apain when youve got mobility problems anyway. The reflux is yuk!!!! awful . I smoke so thats probably not helping should give it up really . well done to you for doing so. I might try the aloe vera and see if that helps . Take care xxx

[uk2]

Hi
Just a quick one as feeling rough. wow id love to lose weight my lyrica and not being active has piled on my weight nearly two stone in 4 months im keeping a eye on it too, amitripipline is ment to cause weight gain too!!  I had reflux very bad two tears agao had investigation too but nothing found, i gave up smocking and took strong meds i also found alo ver juice from the heath store great for that.
Ill post more tomorrow x

[crystaly]

Oops sorry Im on clonazepam for myoclonus, amnitryptaline for nerve pain, lansoprazole for reflux , cyclazine nausea , celluvicc for dry eyes , cocodamanol for chest wall muscle pai and I was prescibed orthotics and boots to try and maintain some balance due to falls . ! Too be honest only take the clonazepam, amnitryptaline , use eye drops and lansoprazole because recently loss about 1 stone in weight gone down from 9 st 7 to 8 st 5 !

[crystaly]

Hi got a bit distratced nothing new there ! God your gp must be good . My gait is awful I can't actually walk very far at all without falling over. My legs are that stiff/tight and my feet are either sasmed so toes are claw like or there the opposite so stuck in the air ! the myoclonus is like a surge of activity that I can feel coming then I look like I,m having a seizure but Im not because Im awake ! Prevents me walking at all when its bad !! Its mostly controlled though by clonazepam thank god !! I asked my neuro and she said its mixed up mesages from the brain that causes the myoclonus Where abouts are you ? when did your symptoms start xx chris

[uk2]

Chris

sorry to hear your having the same differculties with the NHS as i find, my doctor is brill and has been a god send with getting me medication but my neuro has his days!! saying that he was good last time and he is doing all the right test i just pray something shows up soon.
So how does your gait effect you and your myolnus i had a bout of that in my first two flares but when i started taking lyrica it eased and went away, i dont really know what causes the myoclonus do you?
What meds are you on?

Hope your well x