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Saw Neurologist today!

Well saw neurologist today. I have RRMS and have had it for approximately 12 years. I had a thorough examination. I haven’t been prescribed any medication as although I have had numerous relapses in the last two years, they haven’t been debilitating enough, although I think having double vision and vertigo is pretty bad!

My relapses at the moment tend to last 3-3.5 weeks although I have had a permanent odd feeling right foot for 12 years which can drive you mad if you give it any attention.

All those of you who are on medication, did you have really bad relapses in order to get it? My Uncle is the Consultant Pharmacist for NICE and he gave me a list of meds I could have. The consultants face was a picture when my husband casually dropped it in to the conversation, he even wrote it down!

I’m not particularly happy, as I feel that I have to have two bad relapses before they will do anything. Why can’t I have something to delay or even prevent a relapse.

I’m new to all this and maybe this is normal. Does anyone have any advice? Thanks x

hi rachy

i was under the impression that the latest philosophy is to hit it hard as early as possible.

just need to clarify something - are you newly diagnosed?

and have you recently found out that you have had it for 12 years?

it seems strange that if you have had ms for 12 years your neuro hasnt discussed disease modifying treatments.

maybe you should ask him if he could have the discussion with you now.

sorry if my reply is muddled but i didnt quite understand what you meant.

carole x

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Hi Rachy

Having two relapses before being prescribed DMDs is very out of date, you are eligible now. I’m on Betaferon which they now prescribe after just one relapse and it doesn’t have to be debilitating.

The idea is to get on preventative medication as soon as possible in order to lessen the effects of any relapses - why wait? Every relapse causes some degree of damage so you want to prevent them as much as possible.

It might be necessary to go back and see your neuro again and ask for DMDs, not wait to be offered them.

Good luck

Val

How long is it since they started giving DMDs after one relapse and is that only for newbies? Ive had loads of minor relapses for 22 years a couple presenting double vision and a major relapse five years ago leading to SP. I have never been offered DMDs so I’m guessing the new rules regarding hit em hard are since my last relapse five years ago or perhaps because I have had MS for about 22 years.

Rachy give your MS Nurse a ring and ask her, I suspect your MS is similar to the way mine was and that is why no DMDs. I’m not saying your Neuro is right, if you feel DMDs would help you then fight for them.

Good luck

Jan x

I think you should push for DMDs . If your consultant says no push for somebody else. If you have been having relapses (and you want to take a dmd), you should be on them. A relapse ‘not being debilitating enough’ is absolute nonsense and a fob off. Every relapse you have increases the chances of more permanent damage. The whole idea is to reduce (or stop) the relapses to give you a better chance for long term health. The drugs are there for a good reason, and they work. Good luck. None of us here are neurologists but I get the feeling that most of have far better understanding of the situation than some of these (non MS specialist) neurolologists. Good luck.

Hi all, thanks for yr replies.

I asked him outright for DMDs and he told me that u have to have had two severe relapses in 2 yrs to be able to have them. I live in Wales and I was concerned that the people I know who has RRMS are not on meds. Are any of you from Wales and on meds?

My neighbour who is a consultant intrauma Neuro seemed to think that was down to money! The sad thing is he’s probably right. I agree these meds are supposed to prevent relapses and further damage so why not start people on these drugs.

I had my first symptom end of Dec 2003, leg kept giving way and MS hug around middle.This eventually led to an odd feeling right foot, cold tingly etc. It has never got better. I had an MRI carried out privately as I had private health bupa with work but there were certain limitations. Bupa thought I had something in my spine wrote to NHS. I had a further mri with contrast but they couldn’t see anything. They were arguing between themselves. As I didn’t have full private health insurance I couldn’t take it any further. I trusted the NHS as I had also had contrast! I was then relatively symptom free until 2010 when I had vertigo for 3 weeks, woke up with it together with the MS hug. I went to my gp and was treated for vertigo. Again after about 3 weeks this went. It was exactly 12 months later I had the same again but this time when I looked in the mirror I had 4 eyes omg! Double vision. Treated again for vertigo.

It was only when I saw a new GP as I was feeling ill all the time and my ESR level was really high which means inflammation in the body that testing for MS was mentioned.

My right leg also thinks cold is pain. The fatigue is horrendous. My last relapse was 6 weeks ago tingling hands again only 3weeks. Oh an I keep having the phantom touching which is a bit freaky.

I’m wondering if the non DMDs is a Welsh thing! If so I’m moving lol.

My GP was the one that pestered the consultant for me to get me on DMDs as he was not keen to let me go on them,so perhaps yours might help you, i think it all comes down to cost wherever you live as they are free so cost the health service money but surely better than treating some of our relapse symptoms , not that DMDs stop you having them just stop you having so many.

Take care Katy

Hi Rachy, is your neuro a MS neuro? If not ask if you can be referred to one. As Ginsolzzed and a few others have said, you should be offered them. I didn’t think it mattered if the relapses were severe or not, the fact you are having them (& in the last 2 years) makes it active. Good luck, hope you get somewhere. C x

Hi apparently my neighbour said he’s the guru of MS. Yep the more I talk to you the more I think it’s down to money. He was asking if my hands had stopped me doing anything? They hadn’t but was very annoying. Maybe I should have lied! I thought a relapse was a relaps. He said it wasn’t debilitating enough! X

Oh that does make me cross. ‘Not debilitating enough?’ What is the point of saying that? Here he is with a patient who has an incurable chronic progressive condition and he wants to force you to go through two relapses that can taking you off your feet just for the sake of it? Why? For what purpose? For goodness sake…we have access to increasingly effective drugs that will stop that happening and he won’t let you have them? Some guru he is…

If there is an alternative neuro that you can be referred to, do think about it.

grrrr!

i’m mad as hell because it is so unfair.

manchester is not that far from wales and we have excellent provision at salford royal.

write to your mp.

write to the newspapers.

harangue them as much as you can.

we see all the election promises and plaid cymru come across as a very reasonable party but if they are willing to let your ms go untreated then they aren’t that good.

good luck (although luck shouldn’t have to come into it)

carole x

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is it the whole of wales that has the appalling policy of not treating ms?

could you get the ms society’s opinion?

Thank you gonna have to do something as its really not fair as for Plaid or any of them I don’t think MS treatment will be high on any of their agendas! X

that seems perverse to me, as wales has no prescription charges, but that no bleeding use if you can’t get a prescription in the first place… im with the usually mild-mannered carole on this one- papers, tv, internet. start a petition on ‘change.org’ if necessary…

i had my diagnosing relapse last summer, and since then have had 2 x rounds of steroids (awaiting a third as well), rebif (was yukky for me) and awaiting gilenya…

fight for your rights, and if you organise a petition let us know on here as i’m sure you’ll get lots of signatories…

all the best, fluffyollie

Rachy

i think you could be right about the finances. I am recently on gilenya and waited exactly 5 months to get it despite having had 4 relapses on copaxone in a year. When I went into hospital for first dose, my nurse said that 5 people had been put forward for it in March but only 2 have been agreed. It saddens me that to try and slow progress you already have to have debilitating relapses and although the neuro team where I am are lovely, unless they have MS( which mag be the case) how would they know how horrid this disease makes you feel ( although I also appreciate that everyone’s MS is different)

rant over and I wish you well in your plight for answers/treatment

x

The standard reply I have received from Edwina Hart’s AM office. Busy doing nothing. It’s so wrong!! Dear Ms Couch Thank you for contacting me on this very important issue and I appreciate the concerns you raise. As an Assembly Member I am unable to sign a parliamentary Early Day Motion and please be aware that health is a devolved matter within the competence of the Welsh Government. The Welsh Government is committed to ensuring that those affected by MS or any other kind of neurological condition have timely access to high quality services and support to live with their condition, irrespective of where they reside and whether these services are delivered through hospitals or in the community. The Welsh Government will further demonstrate its commitment to making a difference with the publication of the Neurological Condition Delivery Plan this month (May). By setting out this framework of expectations, we can achieve high-quality care and improved population outcomes for people with a whole range of neurological conditions. The Welsh Government takes an evidence-based approach to making new medicines and treatments available in Wales; this means there is a consistent approach, whatever the disease and the medicines involved. It is committed to fund all evidence-based, cost-effective medicines approved by the National Institute for Health and Care Excellence (NICE) and the All-Wales Medicines Strategy Group (AWMSG) and is supporting AWMSG to undertake more timely appraisals. For those medicines and treatments which are appraised by NICE or AWMSG and are found not to be nether clinically nor cost-effective, AWMSG will work with the manufacturer to develop a Wales Patient Access Scheme that will help them overcome the cost barrier. Thank you once again for contacting me and please be assured that I will be raising this issue with Health Minister Mark Drakeford in all relevant discussions. Yours sincerely Edwina Hart AM