Answers at last!

New diagnosis and before diagnosis
1

Hey,

Just wanted to share. Spoke to Neuro this afternoon. Apologised/explained last night’s lack of contact.

Lumbar Puncture showed the antibodies, RRMS it is.

He is very surprised by lack of evidence on MRIs. Said all so far could pass as clear. So I’m very unusual. But there are a couple of tiny white dots (previously assumed not to be demyelination) and he said because of the VEP and LP results he is confident enough that actually that’s what they’re showing. Possibly old damage that has healed/faded.

Tefidera looks like it’ll be drug of choice, but could go for an injectable. Need to do a bit more research into which would suit best and then should see MS nurse in 3/4 weeks and can start then.

For now I am just so so relieved. No more arguing with doctors to try and make them believe me, no more tests (for a while) and I can actually begin to plan for the future.

I’ve actually cracked open a bottle of fizz! Pretty sure that isn’t the usual reaction but for tonight that’s how I’m feeling so I’m going with it. Don’t get me wrong I am completely aware of what this diagnosis is and means. But the relief after months of battling…I can’t tell you.

xx

2

Hi Charlotte

I read your earlier post and could see how unhappy you were at that point. (Sorry, ran out of time to post on there!)

So now of course that’s been superseded.

Congratulations. I know that might seem a weird thing to say if someone hadn’t been following your posts through the last months. But I know that what you wanted badly was an answer. Strange as it might seem, a diagnosis of MS is sometimes (and certainly for you right now) a very positive result.

Now of course, you can move on to the next step, which is a disease modifying drug (DMD). If you’ve not looked at it before, the MS Trust Decisions Aid is an excellent tool: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

You need to look at the various drugs, which have been put on the table for you, in terms of benefits (potential reduction of relapse rate), versus the costs (possible side effects). Also means of taking the drug.

Think about your lifestyle, can you fit Tecfidera into your life? Or would an injectable suit you better? For example Plegridy is a subcutaneous (just under the skin) injection once every 2 weeks. This could seem easier to take than a daily couple of pills that have to be taken with food. These are the kind of things you could be thinking of. (Tomorrow, not tonight!)

Well done on the fizz. It sounds like precisely what you need tonight. Just this evening you’ve gone from utter despair to jubilation. If that’s not good cause for fizzy wine, I don’t know what is.

Sue

3

Thank you for your understanding. It means a lot. I will certainly look into plegridy as I would prefer to inject if the treatment was equally as effective. Thank you xx

4

Glad you got your answers :slight_smile: I’ve finally made contact with my MS Nurse today who has said I’ll only get drug therapy if I meet the criteria. Nothing like the NHS looking after it’s own is there!

I must be honest, 3/4 weeks post-diagnosis i’m jaded. Having woken around 3am with a completely numb hand, not even fingertips but entire hand, which has scared the life out of me, I’ve simply been prescribed even more Pregabalin.

Then had a very nice chat with a Nurse who though lovely, explained that my symptoms are merely “niggles, little irritations that come and go” as opposed to relapses or flare ups. I have full confidence that she knows her stuff, don’t get me wrong.

Today I have realised that actually, a lot of this disease is going to be self management, and also that the diagnosis is actually the easy part. I’m already pretty sick of it all.

5

How would you not meet the criteria if you’ve been diagnosed with RRMS?! Surely that is the criteria for treatment. I know there are different criteria for different types and strength of drug but surely you will be offered something?!

Sorry to hear about your hand. I’m sure the nurse was trying to be kind and reassuring but it’s hardly what anyone would describe as a ‘little niggle’ if it happens to them. I know how you feel. It’s slowly dawned on my over the last couple of months that if my eyes were ever going to get better then they would’ve done by now. It’s almost unimaginable to think they’ll be like this for ever. They’re not awful every day, but they do hurt EVERY day. So I totally get what you’re saying about realising it’s going to be self-management. There is going to be a lot to learn how to put up with.

I’m so glad you’ve had contact with your nurse though and that you liked her. Do you have an idea of which drug you want? My nurse rang today which surprised me, not used to people getting in touch promptly! We are having our first formal chat next month to talk through things in more detail. She was very enthusiastic about tecfidera and less so about injections.

Do you have another conversation arranged with yours? Xx

6

Sometimes people don’t satisfy the criteria for a drug as it’s all about 2 relapses in the last 2 years. Also, neurologists have their own beliefs about which drugs are best. Or even any drug therapies. We are all to some extent reliant on the beliefs and thoughts of our neurologists and MS nurses.

Neurochick, if your MS nurse wants to denigrate your genuine sensations that form part of the ‘pain’ spectrum as ‘niggles’ and ‘irritations’, put her straight. They are uncomfortable, bloody horrible sensory symptoms that deserve more than just a jiggling of your existing prescription. Pregabalin is used for pain. Are your hands actively painful despite the Pregabalin, maybe it’s not the right drug, or maybe you need something else as well? If so, see if you can get a different drug, maybe Amitriptyline might help?

Meanwhile, see if you do fit the criteria for DMDs. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/disease-modifying-drugs-dmds If you satisfy the criteria, then you are entitled to an appropriate drug therapy.

Meanwhile Charlotte, your MS nurse is certainly on the ball to be phoning this quickly. Good. But don’t be shoved into the drug she prefers if you want another. Tecfidera is certainly a good drug, and one that suits many people. It has a good relapse reduction rate (50% on average), but it does take some getting used to. If you end up trying it, see if you can start super slow. The normal dosage is half dose the first week, then full dose thereafter. But it’s easier on your stomach to start with one half dose in week one, then 2 half doses week two, 1 half and one full dose in week three and two full doses in week four. You have to sandwich each dose between food types, preferably relatively starchy. If this doesn’t appeal and you’d prefer a lower relapse reduction rate with less side effects such as an injectable, (mild flu type reaction mostly, managed with paracetamol), then stick to your guns. It’s your choice, not the MS nurse’s that counts. You fit the criteria for either drug.

Regardless, you can always change drug later. So if you begin one, and dislike it, ask to change.

It’s a big thing to be diagnosed with MS. It’s definitely better to be diagnosed than certain you have it but be in ‘limbo’. But there is still a steep learning curve. It takes years to be as knowledgeable as many of us on this forum (23 in my case!). So don’t feel that you have to know everything all at once. Keep asking the questions. Keep helping each other and keep reading.

Sue

7

Congrats on finally getting your diagnosis. I say congrats because I felt relief and pleased it wasnt the HSP they`d labelled me as a few years earlier.

I`d spent 22 years searching and wondering.

It is a blooming huge relief and worthy of popping a cork to celebrate! Some folk may not understand us, but we get each other.

Good luck with the DMDs.

#Boudsx

1 Like
8

Sue thank you for this really informative bit of writing! I found the “not fit the criteria” comment a little bit rude really. I’ve seen a neurologist once in January about this. Since then i’ve had issue after issue (though the diagnostic process has been fast). He thinks I’ve had this for around 3/4 years as initially the symptoms I had I didn’t see a G.P for and just parked them.

Charlotte thats really interesting that the MS nurse spoke unobjectively about the treatments going. Oddly enough, my one also said that the neurologist decides then the nurse is the one who sorts all that out. I always try to keep in mind issues around funding too (I’m NHS but my other half is private sector health) so I know that there are lots of variables.

I’m going to start researching the different treatments. I am 47 and also take 2 other medications long term so I want to get the most fitting mix. Really loathe the idea of stomach side effects though.

9

Thanks for your replies and advice Sue and Bouds. It’s so nice you both get it :slight_smile:

Ive certainly got a lot of reading up and learning to do. It’s just nice to know now that it’s all going to materialise into something actually happening this time and not just researching bits and pieces here and there without really knowing what to be looking at.

Nurse also reassured me that drugs can be changed so there is no pressure to get it ‘right’ first time. I can always change my mind and these drugs should be ok to switch between without any nasty rebound effects etc.

Thanks for the dosage tips Sue. I will definitely be using that approach if I do opt for tecfidera. I loathe the idea of the side effects too but trying to remind myself not everyone gets them so fingers crossed it won’t be as bad as I’m imagining it might be! X

10

Charl84

Glad you have some answers, and that you are feeling glad enough about it to drink fizz. I posted during week but phone posts not been working so appearing invisible. Anyway all has been said much better than me, good you are philosophical about and all the work has started to get you on your road

Glad fizz not off the menu too, cant tell you how many times whilst googling about MS I have been obsessively checking whether its still ok to drink if diagnosed !!

Hope you are as well as can be x

11

Hi

Drinking is OK when diagnosed with MS. But, there are some medications it’s not a good idea to mix with alcohol (always check the labels for contraindications as well as side effects). Also, if you’re at all unsteady, booze will make it worse.

Saying that, I’ve always drunk, not to excess (usually!) and safely.

So it’s not MS per se that means it’s not possible to drink. It is a choice that many people make, ie, it’s healthier and some diets rule it out.

Sue

12

I’ve actually read that some studies have showed a benefit of (moderate) alcohol consumption for ms. There’s not too much I’ve read I like the sound of but that was one of them so I’m choosing to believe it