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 received the neurologists letter earlier this week.
He clearly listened and understood me very well and relays that in the letter.
He says that I fulfil all the criteria for CFS. He says he is unsure if the pain etc would fall within the spectrum of Fibromyalgia but in view of the severity he would like me to be referred to rheumatologist to exclude a significant rheumatological condition.
He said there were inconsistent distal sensory changes to pinprick and temperature.
He says in view of the patchy, unilateral nature of the neurological symptoms he is referring me for an MRI of the brain.
He's recommending I try Duloxetine?
Any comments appreciated.
Generally though, I feel that at least I am being taken seriously and they are covering all areas.
When I saw the neuro he glanced over my symptom list for about a minute(I know they do not have much time per patient), and then he asked me could he keep it, so I said yes, I had another copy. And I thought no more of it. Anyway after having the NCS the next letter I was expecting was a new appointment. Imagine my surprise when the letter I got today was to let me know they could now offer me a neuroradiology appointment. The neuro never even mentioned MRIs at the appointment I had with him. So I am wondering if it was ordered after he had time to look at my list. Anyway I rang and I have MRI brain and spine on Saturday 25th August at 3pm. I have had MRIon brain before(which I was told no significant changes, whatever that means lol), but I am a bit nervous about the spine one and lying for so long as my lower back becomes very painful after about 5 minutes of lying flat. I can appreciate how much dx members on here have been through, but just wondered if you had any little gems of advice for me going into this.
sorry to go on xxxxx
I just got a letter from the neurologist regarding the MRI I had recently. It says "your scan shows relatively minor change since the last one although I think there is a new enhancing lesion so we could potentially proceed with Tysabri. We can discuss this further when you return to clinic"
I do really appreciate him taking the time to write so that I'm not wondering about the results until the appt on 23rd, but now my head is spinning with it, I am over analysing the letter big time I think.
What does he mean 'relatively minor change' - does this mean it's less than expected with the symptoms I present? How can he 'think' there is a new enhancing lesion, surely there either is or isn't? What does potentially being able to proceed with Tysabri mean? Can I or can't it?!
I am trying to see it as a good thing - not too many lesions but just enough to be eligble for Tysabri. But at the same time I'm feeling a bit like well were all these 'relapses' really relapses or am I just making a big fuss over nothing? I guess in 1.5years some could have healed and not be showing?
Sorry for a bit of a nothing-y post, I'm in a weird place at the moment (the kind of place where I burst in to tears in Sainsburys for no apparent reason) and I can't get hold of anyone to talk to about this 'in real life' so just needed to vent really.
I've just received a copy of a letter from the Neuro to my GP, in which she outlines the initial appointment I had with her, the tests she's ordered (which I've now had) and a description of my symptoms.
A few things stood out. The first being that the Neuro states that if the MRI shows evidence of demyelination she would arrange a lumbar puncture; I was informed that that would not be necessary. I suppose this would only go ahead if it wasn't absolutely conclusively MS. If the scan is normal she will then arrange EMG nerve conduction tests to check for peripheral damage.
The neurological findings appear to be quite normal from what I can gather, apart from my left pupil being larger and sluggish in response to light, a tremor in my left outstretched hand and she states that abdominal cutaneous reflexes were absent. I've had a look on the internet to see what that signifies, but I'm a bit baffled by it. I know when she was pricking my stomach and apologizing that it wouldn't be pleasant, I couldn't feel a thing. Is it therefore abnormal to have these reflexes absent, or not?
So, I'm now just waiting to see what the scan and VEPs showed, so I can know what happens next. It'll either be lumbar puncture, EMGs or a diagnosis. I'm spinning a big 3 sided metaphorical coin now - wonder which way it lands!!
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.
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