Before my petition can be go live on https://petition.parliament.uk I need 4 more people to support my petition.
please click on this link to support my petition
https://petition.parliament.uk/petitions/111992/sponsors/ufHX7HYzS1cxEjJ...
My petition:
Sativex to be Widely Available for MS Suffers
This petition is to ask the goverment to make Sativex widely available to people who have Multiple Sclerosis (MS) to ease the symptoms of MS spasticity, spasticity can have a significant impact on daily activities.
http://www.bbc.co.uk/news/uk-wales-28810407 The NHS in Wales is first in the UK to fund a cannabis-based medicine for people with multiple sclerosis.
MARINA ASKED (via the mailing list):
What difference would having a definite dx make to those of you (like me) who are still without a definite dx (as tests etc are still inconclusive etc)?
Or, what difference did it make to those of you who have had a definite dx?
How does having a dx help (given that there is no cure) and what does it change?
To what extent does it matter if one knows for sure or not? If it does matter, what makes it matter?
Hiya Everyone,
So I get back home from the hairdressers peed off because the colour & cut wasn't what I really wanted to be told by hubby that I had to ring this number. Well my hair paled into insignificance when I rang and was told by the girl from the hospital a bed would be ready for meon Tuesday 18th Considering when I saw my Neurologist on the 9th of May he said that it could be 5 months before he could get me in!
Ok so to my story, it could be lengthy, so please bare/bear (never know which one to use)! with me.
Been having painful spasms for the last 8 yrs, and on my 3rd Neurologist. They started in my hands and progressed to feet, legs and torso (there is a video on my leg spasms on here somewhere) Last August my present Neurologist said I was suffering a condition called PKD. In February I started with a bit of blurred vision, so although it was less than a year since my last eye test, I had another. The Optician said that my right eye had got considerably worse and that I needed a change of lense
In March I saw the Neurologist, showed him the video which he was pleased to see and took a copy of it, he said he'd see me again in 8 weeks, and I was in and out before I knew it, I felt it was a waste of time...
However, In April I started getting arm and shoulder pains and stiffness couldn't (and still can't) get my arms above my head, I need help to get a top on/off over my head. Getting out of bed is a nightmare at times and turning over in bed is another story! The way I can only describe waking up in the morning is 'uncurling the pain/ stiffness away' can anyone relate to this? Shortly after this started I noticed that my legs started to feel like lead weights, I can't walk around the local shopping mall now, after a walk around 3 shops I'm exhausted and my legs have a deep, deep pain to them...I'm 58 and feel 78, by now I'm starting to feel really low in myself.
So the 8 weeks appointment is here and he tells me that because I can't tolerate any of the meds (Anti Epileptic drugs used for PKD) there's no point in prescribing any more. I tell him about the pains/stiffness etc and he says ok will have you in for tests, it will be about 5 months!.
Went to see my GP as by this time I'm depressed and she recommends that I go on ad's. She also tell me that she had received a letter from the Neurologist saying that after seeing my video in March and the length of time that the spasm lasted (5/6 mins) it is not what he had first thought...so now it seems I don't have PKD
So here I am today not knowing what I have, but what is mind boggling for me since all this pain/stiffness started, my spasms have decrease...which is great, but odd..
So I guess or hope by the end of next week I will know what is happening to this body of mine, I know I will have all the necessary tests/ mri, but is there anything I should be asking or asking for, regarding tests?
If you have got this far...thank you
Best wishes
Trish x
Medication:
Baclofen
Mirtazapine
Hello again,
Ok cold just about gone, periods over, and now i feel totally crap!
Been feeling quite good for me lately until yesterday and then my head went woolly and wobbly and my walking became more difficult. Im getting more headaches too.
Usually i can pin this on something but not this time, this is the time when i would normally feel better and i dont understand this at all.
Any ideas?
Hi everyone hope everybodys ok . On yet another relapse really fed up now there almost becoming continuous now im so sick of it . Ive even decided to give in and start dmds im just waiting for the appointment to come through as i cant Carry on like this .I have my sisters wedding tomorow and i really dont know how im going to manage all day . My balance is shot looking like a drunk person my left leg hand and side of face are completely numb oh and then theres my cheek that Has developed a mind of its own and is constantly twitching for all to see. I feel so crap but really have got to go i just dont know how im going make it through the day. All my symptoms are always my left side never my right does anybody else just have all there symptoms one side ? Is that normal ? Thanks :( x x x
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.
The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
