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Eligibility and funding for DMD’s - new diagnosis

MS unexpectedly gate crashed into my life in the New Year following vision issues.

Despite having no prior history (CIS etc) I have been officially diagnosed. For now at least my symptoms have resolved but emotionally I feel like I’ve been hit by a train. I feel like my wings have been cut. I feel like someone has stamped on all my hopes, dreams and plans which such violence that there is nothing left of them and they are lost forever.

Anyway, right now I am raging war against the NHS. While I recognise this is my way of trying to cope I am quite serious about getting DMD’s. The neurologist who diagnosed me said it is too early to tell what type of MS I have and that I may never need DMD’s. He wanted to wait and see. I wasn’t comfortable with this and given the speed my symptoms came and went I would argue I have the RR type. He had now referred me to someone who can assess eligibility and I’m waiting to hear when this will be.

Since all this has happened I have researched MS to the point of obsession and consider myself pretty educated. I had my first meeting with the MS Nurse yesterday which wasn’t very helpful to be honest and did nothing to reassure or clarify anything to me.

I know I am splitting hairs at this point but I feel my diagnosis should technically be a CIS and therefore probable MS. I asked the Nurse and she said Neuro’s can use there discretion and that’s fine except I cant help but wonder if I have been diagnosed with MS to ensure I fall outside the DMD criteria for both CIS and MS. I understand meds can be available following a CIS but before an official diagnosis. Since I have been diagnosed I assume this will not apply to me and therefore I am not entitled to meds until I have a second attack. This makes me very uneasy.

I asked the MS Nurse if I am able to self fund DMD’s and she said this isn’t an option either as they are only available through the NHS. Is this right? Surely if I have a diagnosis and I have the means to pay this should be an option.

I know DMD’s are not wonder drugs (clearly) and I don’t relish the thought of injecting god knows what into me either but I will push for what I feel is right for me. Can anyone advise please?

lts more important right now to check your vitamin d3 levels and vitamin b12 - just google vitamin d3 deficiency ms - and vitaminb12 deficiency ms. Also, try 'Could it be B12- an epidemic of misdiagnosis.

Don’t panic about dmd’s. Get yourself as ‘fit’ as possible first. Even if your neuro does decide you need dmds it is still paramount that you make sure you have high levels of both of these ‘hormones/vits’

There are many on this site who are on dmd’s. All with varying degrees of success. l am sure they will reply.

l have had ms for 30yrs and have never taken dmd’s as l have secondary progressive ms.

F

Dear Humbug,everybody who writes on, and looks at these Boreds knows how you feel.That may not be much of a help ,but you are not alone.What you will find is that you have your very own version of MS.The medics will insist on putting it into one of four classes.There will be broad similarities with what you are ‘enjoying’,but you are the world’s leading expert on your version.

Your hopes,dreams and plans are still intact,it’s just that you might have to approach them from a slightly different direction.Over the past 12 years I’ve found myself living every day as best I can,but with plans and schemes ‘simmering’ in the background.I’ve managed most of the plans with flexibility and attention to detail.

It’s very unusual for me to support what a Neurotic says,but yours is right in saying “Wait and see”.I know very little about DMDs apart from that they are expensive,shrouded in politics and appear to suit some peeps but not others.I or anybody else cannot tell you what to do,only suggest things and advise.

After I was diagnosed I got money from the Fire Brigade when I was pensioned out,and along with the wife ,made the decision to “Do things that I might not be able to one day”.Hence, a boat,a crazy Kit Car and jaunts to foreign climes.All gone now,but good memories and photos.I have no regrets about doing those things and should have jumped out of a plane.That’s not impossible,but is a bit more tricky now.

I’ll let you get on now,but I will say that you must not be an Egyptian…In De Nial

Good luck,

Wb

I was diagnosed after a cis in October that I’m still not recovered from. As I had other lesions my the consultant diagnosised ms. I think it depends on the consultant and the amount of other lesions, do you know how many you have. I like you read up on everything so know exactly how you feel. I was offered dmds and tried but this made all my symptoms worse and I have just had another MRI and await a visit with my consultant this week to see what’s going on and discuss. I also feel like life is over, especially as I haven’t recovered to a point where I am living a normal life.

I think I would base my decisions on the amount of other lesions in the brain if I was in your shoes, if this is low you may not ever have another attack so I would hold off dmds, but if like me you have more than 5 the risks increase and I would push for them if you feel strongly about starting. You could always get a second opinion from another hospital and pay privately as I have a friend who lives in the same town as me but is at another hospital and her care has been completely different to mine and is not on dmds and has had no follow up MRI after 18 months, she though has Managed to carry on normally and is much more positive than me and I think this is to do with the fact that her consultant handles and words things differently , she also never reads up on ms and in a way i think the speed of diagnosis and the fact that we both read everything hasnt necessarily helped me with anxiety and depression. I have read that with a cis you should have a new MRI after 3 months, but it obviously is very dependant on the hospital. I hope you get some answers and would be interested to hear how you get on. Zoe

to all you people newly diagnosed. life is not over, its only just starting.

hard to chill out i know but you will get there. im sure when the time is right your neuro will offer you what he conciders the best route for you.

good luck mtt

I have a sneaky feeling that your argument is going to have to be with the next neuro you see. Do you know who this is? Is he/she an MS specialist?

It’s not common knowledge, but not all neuros can prescribe DMDs. Perhaps the one you’ve seen to date can’t?

If your symptoms went into remission after your attack, then I cannot understand why the neuro told you that it’s too early to tell what type of MS you have. The wording “primary progressive” means that it progresses from the start - and that means no remission. It also does not tend to start suddenly. So it’s not PPMS (or PRMS) which only leaves RRMS as a viable option. Perhaps he meant that your MS might be too mild for DMDs, i.e. not meet the criteria? How bad was your attack? If it was bad enough for him to diagnose you after just that single attack, then how can it not be bad enough for DMDs? Or perhaps he meant that because you’ve only had the one attack, you don’t meet the “two attacks in two years” criterion for DMDs. But why did he then diagnose you with MS and not CIS/probable MS?

It all sounds a bit of a mess :frowning: And, tbh, rather than than try to deny you DMDs, I reckon this neuro has filtered worded up :frowning:

If I were you, I would find out who this next neuro is and prepare for a DMD debate. I think it might also be wise to ask if alternatives to MS have been properly ruled out - there are various causes of one off demyelinating attacks and I’m not sure I would trust the first neuro to have done the job properly!

Have to agree with mick too - life with MS might be different than planned, but it can still be a good life.

Karen x

Hi, I just cant believe how quickly you have been diagnosed after just one attack. I had my one and only attack over 4 years ago and still the medics argue over my diagnosis. I recovered well after that attack that my GP thought was a virus. But it seemed to trigger spasticity in one leg appearing months later which has progressively got worse. One neuro thinks radiation myelopathy (from treatment that I had in 1990). Another thinks possible MS or CIS. I have had 2 MRIs both showed only one lesion in cervical spine. I have had 2 negative lumbar punctures too. I am due another MRI in a couple of months. I too feel frustrated that it is very much a wait and see what happens next approach that they are taking with me. It is hard to tell if decisions are being made with patient or budget in mind - in other words would they give you the DMDs now if they were cheap?

My physio really thought botox would help my spasticity. She even said that she had seen several patients for whom the Botox had reversed the spasticiy cycle especially for those who only had a CIS. She said that it could be given in small doses in up to 3 muscles on one leg. I got very excited about this and was referred to a neuro who did the botox. He said that he thought that it would not work me so didnt give it. The physio was surprised. I am left wondering was the reason really budget!

Regards

Moyna x

I was also diagnosed after one, in my case pretty mild, attack. I was referred to a neuro by my GP and had insurance cover so saw a neuro and had an MRI quickly. The MRI showed lesions and I was diagnosed.

At that time, in 1999, there were no dmds, so I was told to go home and come to terms with my disease. I saw a slow decline for the next eight years but had no relapses. I was offered beta interferon, but the stuff I read about it at the time said that it reduced the number of relapses someone would have, but would NOT slow their rate of decline. Since I wasn’t having relapses, I couldn’t see the point of taking it. My neuro agreed he would do the same thing in my position.

I started having disabling relapses something like a year after that. I started on Tysabri a year and a half ago. Tysabri slows both rate of relapse and rate of decline, on average by two thirds. It can have devastating side effects and this is more likely if you have been on some of the other dmds. That’s my understanding anyway, but it’s not usually mentioned when people are offering you dmds.

If you want to get a second opinion, I can give you the name of one of the best neuros in the country. Pleny of neuros are just rubbish - the one who offered me beta interferon is - not saying that because of his offer to me but because of other other dealings I and other people I know with MS have had with him.

Hi hamburg, let me first of all say welcome and try to offer some reassurance that you will be ok, you can still do things, you will manage and you will keep going. I’ve never found the ms nurses much use either but if there is one thing I have learned with ms nurses over the years, they DO NOT like involving themselves in anything to do with the private sector, at least the ones I have seen dont. I can’t see why you couldn’t self fund dmd’s yourself tbh. When I was newly diagnosed (end of 1995) I wanted to take the newly licensed betaferon. The nhs weren’t prescribing it and I asked about self funding. Although I never went down this route because the nhs did let me have it, the impression I got from neuro was that yes , I could have had a private prescription there and then. It’s a licensed drug, why couldn’t you have it on a private prescription. But your problem is that the neuro is saying you aren’t eligible, if you’re not eligible, then you won’t be eligible ln the nhs or the private sector, since you dont meet the eligibility criteria. Also dmd’s are expensive, and it will be a long term commitment, of course i dont know your financial situation but imo , you really need to get them on the nhs if possible. You say you are now waiting to be referred to someone else, so wait and see how this goes. You could see a neuro privately if you could afford it, which it sounds like you could, this would be quicker and let you see the neuro of your choice. If that neuro agreed to prescribe you dmd’s, then he would probably refer you back to being a patient of his on the nhs and then you would get your dmd’s on the nhs. I know they do this because I saw my first neuro privately, he referred me back to him on the nhs and made a special case for me to get the newly licensed betaferon. What a great neuro I saw! Cheryl:)

I was also diagnosed after one episode but unfortunately couldn’t get DMDs until they became available on the NHS. I then went straight on Betaferon as soon as I could.

I don’t know about the other DMDs but Betaferon can be prescribed after a single episode/relapse and it is well documented that it is better to get on then as early as possible. Relapses cause damage so it makes sense to try to prevent them as much as you can.

Best of luck with whatever they finally let you have.

Val

Thank you for all your comments :slight_smile:

If your symptoms went into remission after your attack, then I cannot understand why the neuro told you that it’s too early to tell what type of MS you have. The wording “primary progressive” means that it progresses from the start - and that means no remission. It also does not tend to start suddenly. So it’s not PPMS (or PRMS) which only leaves RRMS as a viable option. Perhaps he meant that your MS might be too mild for DMDs, i.e. not meet the criteria? How bad was your attack? If it was bad enough for him to diagnose you after just that single attack, then how can it not be bad enough for DMDs? Or perhaps he meant that because you’ve only had the one attack, you don’t meet the “two attacks in two years” criterion for DMDs. But why did he then diagnose you with MS and not CIS/probable MS?”

Exactly and this is what I can’t understand. My attack wasn’t that bad in the grand scheme of things I guess although it was terrifying at the time. Basically over a three day period I developed double vision and then Nystagmus in one eye. My vision became very poor. My coordination and strength remained ok although I did feel off balance when it was at its worse but not to the point where it affected my mobility. I’m ok now.

My MRI showed two areas of inflammation on the brain and the lumber punch was positive. All I know is they did ‘full bloods’ and they call come back clear. There was question mark about my thyroid and this will be checked again in three months. I asked about my vitamin levels and he said they were ok.

There was a mix up with my bloods however and they were lost for a while. They were evenly found under a different patient’s number. I hope they were my bloods.

I don’t think the neuro who diagnosed me can prescribe meds hence the referral to someone who can. He only reluctantly agreed to this though following quite forceful negotiation on my part. Basically he said the lesions are small and it might end up being ‘mild’. I don’t think there is any such thing as mild MS personally and I know one of the lesions was/is on my brain stem and from what I have read this is not particularly good news. I fully intend to take it up with the new neuro.

The MS Nurse has been anything but helpful. When I first spoke to her some days ago I was really struggling and I told her I wasn’t coping. I was sobbing down the phone. I asked if there was anyone I could talk to / she could sign post me to etc (for emotional support) and she said she couldn’t advise until all the paperwork had been sent over. Frankly I find this appalling as I was / still am in a really bad way. Yesterday’s home visit wasn’t much better. She gave me no reassurance at all. I told her my only experience of MS was someone who had been badly affected to the point they were being tube feed and completely paralysed. She didn’t comment apart from saying we would be having a different conversation in 6 months time. I rang the MSS helpline after and that helped a lot although they couldn’t really advise re DMD’s, funding etc.

I can access counseling through work luckily and I have an appointment on Thursday. I’m hoping this helps as the need to talk to someone, to just verbalise how I feel is overwhelming. I know life goes on and I’m probably not being rational at the moment but the shock of going from normal to diagnosed in less then three weeks has completely floored me and I can’t seem to get back up.

Sewingchick – if you could give me that contact that would be brilliant thank you.

Zoe - I hope you recovery soon. The MS Nurse I spoke to said it can take a good 6 months or so.

Hi,

I was diagnosed in 4 hours - possibly the fastest diagnosis ever! This was 12 years ago and I started Rebif (beta-interferon 1a) pretty soon after, as I’d had about 8 bouts of odd illness in that year, all of which lasted around 6 weeks or so. My neuro was quite sure that it was RRMS and he was correct.

I was lucky though - this was in south-east Asia and the MRI tech was from the UK and knew exactly what he was seeing and pulled me out and injected Gadolinium. I had about 5 lesions, one of which was glowing and active. My lumbar puncture was positive for oligoclonal bands as well. I also had double vision and nystagmus just like you.

We used to pay cash for the Rebif, but once we returned to the UK, it was available on the NHS. I’m still taking it even now and I’m still RRMS. In fact, I’m going to try to go back to work this year.

It may seem like the end of your life and you will have some bad times and good times to come. The goal is to try to stabilise the MS so that relapses are reduced. Each relapse leaves a scar, so taking a DMD, or one of the newer drugs may work really well for you - it has for me.

It’s been a roller coaster ride, but I didn’t imagine that I’d still be okay some 12 years after diagnosis and 20 years since my first attack. I have been at times really ill. I had a 9 month-long relapse in 2005 and a bad one in 2009 (but I wasn’t on Rebif then, as we’d moved countries again).

Many people here have been through what you’re experiencing now. It’s a good place to start to find others to help with advice. Well, to be honest, it’s probably the best place. I do hope your next neuro appointment goes well. xxxxx

Update

I saw a new neuro today who said at the moment it’s a CIS and can not yet be formaly diagnosed as MS! This is what I have said all along despite being clearly told by the other neuro that it was. Not happy. He does not want to give me DMD’s either saying there is little evidence they do any good at this stage. I feel like a sitting duck.

He suggested having a contrast MRI in 3 months and take it from there. I have already informed the DVLA, had to disclose MS to work, see OH etc. Sorry, just wanted to moan. On the plus side I still feel well right now.

More bloods taken today too :frowning: