My RRMS is ‘clinically stable’ apparently – why do I feel so bloody crap then…!?
No new symptoms, just the old ones making me feel rubbish. But seemingly that’s ok because there’s nothing they can do about them now as the damage is already done.
Wasn’t told how important it was to go on DMD’s when I first had symptoms, Neurologist now says I’m not eligible until I have 2 new relapses within 2 years – but what about damage being done behind the scenes so to speak?
Hi everyone
I do not know whether any of you have received the following request from the MS Society.
Just in case you have not, I am posting this email I have received to ask you to contact your MP to try to make a difference.
Great Dane x
Off-patent Drugs
Right now, researchers are investigating whether drugs that exist to treat other conditions can also be used to treat MS. These are drugs like Simvastatin, a drug normally used to treat high cholesterol.
Research shows this drug has the potential to slow the worsening of disability in secondary progressive MS. If further research confirms this, we’d want this drug to be made available on the NHS, but there are currently significant barriers that would prevent this. You can read more about the process onour blog.
How can we change this?
An MP, Nick Thomas-Symonds, has introduced a Bill in Westminster to tackle this problem and improve access to low-cost treatments for a range of conditions including multiple sclerosis.
Take action
To ensure the Bill is successful, we need at least 100 MPs to go along and vote for it on Friday 6 November. And we need you to contact your MP and encourage them to back the Bill.
The vote is on a Friday, when most MPs return to their local constituencies, which makes it more difficult to convince them to be in Westminster. Your email could make all the difference – please email them today.
We are supporting this Bill to ensure people with MS have access to the right treatments at the right time. Please ask your MP to do the same.
Thank you for your support,
Emma
MS Society Campaigns Team
I just need a virtual hug, again. not MS but it does affect it
AS I have mentioned before we me and my husband are responsible for 3 elderly people. one has now gone in a home, but as you know you dont just forget about them there are still lots of things to control.
Father in law who has had lots of mini strokes has been unwell this week he is also blind partially deaf and has emphysema and asthma and has had a chest infection this week, well we have been trying for over 2 months to have him assessed by social services.
Well because a doctor had to be called out at the beginning of the week they got crisis care in. and a daily nurse .
Well the nurse this morning, phoned me because hubby was at work , I felt she was having a go. she says
He has had nothing to eat or drink , he has not took his inhaler or meds , he is sat here incapable.
Well my husband went round last night and said you wont get a carer in the morning can you manage your meds and your porridge and I will see you at lunchtime when I finish work, yes he said, hubby got the jug out that he uses for his porridge and all was well.
They rang me yesterday and told me his clothes and underclothes have not been changed for a while, so yesterdays carer got out clean clothes for him. He didnt put them on though. A week back I arranged daily dinners for him (private meals on wheels) He told me to cancel them. They wanted him to go to day care at a place for blind people ... he refused, he wont have a key lock safe even though he doesnt hear the phone or door sometimes. He has now accepted that carers can come in. The other day though she phoned me and said he wont let her do anything for him and so she took the guide dog for a walk. That is another job we have to do.
We have been getting him wiltshire farm foods for a long time and he was managing to microwave them.
The other day the nurse who rang me said he does seem capable of doing these things,, this one this morning said he is not able to use his inhaler unsupervised, I told her I know nothing about inhalers anyway.
My husband has changed in the last few months and is even less tolerant about any little MS moans I have. My mother is 91and I get her online shopping read her post take her out and do her laundry. My hubby is working full time and also has CKD even though its manageable all this does him no good either. Moan over I feel better now I have ranted... thankyou, I know ou cannot do anything. I just felt a bit upset that the nurse seemed to think we had neglected him this morning, I took it personally I often feel like running away.
You know that feeling, the one where you think perhaps a trip to the loo is probably wise, certainly in the next few minutes or so.
But of course it is just a feeling, there is no point in making the trip as it would be, as they say, unproductive.
I've had that for a few days now.
Everything seems to be in order and in the words of the late Brian Hanrahan,
'I counted them all out, and I counted them all back'
It might have coincided with starting a new drug. They all seem to list both extremes as a potential side effect, so it is not really too helpful.
The pain is I just seemed to have got all that in order and now it is all over the place again.
Isn't this MS lark fun.
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.
