Newly Diagnosed - so many questions

[spluff]

Hi all,

Sorry for a long post - but have a million thoughts racing around my brain…

I was diagnosed with MS last week and as you can imagine its still fresh and raw…

Just a few questions & thoughts:-

1. The neurologist said that she wont do regular MRI scans and will wait for relapses…

a. How do you know what and what is not a relapse? I get different things happening every day and just wondering what and when you can say its relapse? What happens if i miss things as relapses, therefore the DMDs arent working effectively!

b. I watched a video that says regular monitoring is good because even though you dont feel like you are getting a major relapse then with regular MRI scans you can see the activity of the MS and decide if drugs are working. I guess this is down to cost etc but can I force regular MRI scans to monitor the progress of my MS?

2. Drugs - so many choices…

a. I watched a youtube saying that the quicker you take the more effective DMDs the better as you will be getting less disabled and less brain shrinkage. There is some extra risks with these DMDs but I would be willing to take that risk (you can get monitored aswell). The drug they are talking about is Tysabri. Can I force to get this drug as my first?

b. I am also very worried about injecting often - I am really scared of needles if cant get on Tysabri straight away - can I be offered another tablet form (is it as effective?)

3. MS Nurses

a. I was diagnosed and had to chase up an appointment for MS Nurse which is now 6 weeks away - I thought this would be a lot quicker as being newly diagnosed have so many questions… Also the main point is that I was told it is so important to start taking DMDs quicker to have the best effect.

4. Headaches

a. Im suffering every day with a headache in the corner of my eye - it keeps varying in intensity. My neurologist says she doesnt think its MS related. Is this true? I never had this before? What can I do - its the worst thing I am feeling at the moment and driving me crazy!?

Thanks for you advice…

[alison100]

I am sorry about your dx.

Your questions:

1

Relapses: I’m sure there is a technical definition of a relapse, but many of us get the advice, ‘if it lasts for more than a day, make a note; if it lasts for more than a week, get on the phone’. As for what constitutes a relapse in terms of severity, the medics tend, it seems to me, to set the bar higher than people with MS do. If something isn’t causing you significant problems, they’re not usually very interested.

MRIs: Most of us don’t get another MRI unless there is some particular reason, such as checking that what looks like a relapse really is only MS and not something worse. I think it is getting more common to have one at significant points like changing drugs just to check that they have a fairly recent base-line on record, or to aid decision-making. But in my experience the medics are generally happy to accept the way you are presenting clinically as a good picture of how your MS is doing and how your DMD is performing. The exception that I am familiar with it is…

2

…Tysabri.

If you are offered Tysabri it is bad news and good news. The bad news is that you have highly active, rapidly evolving RRMS (as do I) and that is every sort of bad. The good news is that you qualify for Tysabri, although it carries risks that are only worth taking if your MS is really aggressive and you have to fight fire with fire. There are plenty of MRIs if you’re on Tysabri. But if your MS isn’t behaving aggressively enough for them to be recommending it to you, that is excellent news.

The first-line DMDs have moved on a lot since my day (I was on Avonex for 10 years), so I don’t have anything to add on those except that it is good that there are more choices available than there used to be.

3

MS nurses

Generally brilliant: always overworked. Even if you are in the throes of a relapse, they can be hard to get hold of. If you’re not, delays like the one you describe are pretty normal, I’m afraid.

Getting on drugs early

When they say this, they tend to mean get on them as soon as you can rather than taking a ‘wait and see’ approach and leaving it for years. Sooner the better, obviously, but don’t stress out if it takes a few months - the wheels are in motion and that is the main thing. A few months’ delay (at least) is probably pretty normal and has certainly been my experience.

4

Can’t help, sorry. What does your GP say?

And finally…

An MS dx is a horrible shock to the system, and it is perfectly natural to get going straight away with the fight-back. Any delay feels like for ever, I know. But I’m afraid that the need for patient waiting that tends to happen pre-dx does continue post-dx! Just try to take things one day at a time and try not to stress out too much about the detail. You have your dx, and you are on the road to getting yourself on a DMD. The main things are in place already, or are on the road to being so. You have an awful lot on your plate jut dealing with the news of the dx; don’t waste too much of your precious energy trying to speed up the NHS: it works at its own pace and it does get there in the end.

Good luck with it all.

Alison

[spluff]

many thanks for you reply and comments - really appreciated

1. Relapses - I am going to find it really hard to know when I am going to get one as things come and go all the time - obviously optic neuritis was a definite relapse but increased tingling which lasts a few days then goes and then numbness comes and goes… I am going to be wondering what is a relapse all the time

2. Tysabri - I know its recommended for aggressive MS but i cant see why it can not be offered when its slower and unknown - we all know MS is unpredictable and if taking it earlier would delay/stop symptoms and disability then why not take it earlier? I know there is risks (but these can be monitored)

3. Thanks understand now

4. Headaches - my GP has tried various painkillers, and neuropathic drugs (Lyrica and Gabapentin), antihystamines (Naproxen) and i even tried massage and acupuncture. Nothing works - it is driving me crazy and i feel like im hitting a brick wall on this now… This is my worst symptom - MS or not (i can live with the tingling, numbness and blurry eye)… I just want some kind of help on this

[alison100]

@spluff

2. Tysabri - I know its recommended for aggressive MS but i cant see why it can not be offered when its slower and unknown - we all know MS is unpredictable and if taking it earlier would delay/stop symptoms and disability then why not take it earlier? I know there is risks (but these can be monitored)

Every drug decision is a balance of probable risks and benefits. They try to prescribe the least-risky thing that will do the job for you. You need to be in a lot of trouble for that thing to be Tysabri. Let’s hope you aren’t.

The doctors’ aim is to keep you as well as you can be while keeping you as safe as you can be. There are no perfect answers, but they’ll do their best for you.

A

[Paolo_Smythe]

Dear Spluff. I am sorry that you have been compelled to come in here but, well done!

As crappy as the news of your diagnosis might be, you seem to be taking the ‘MS bull’ by the horns and instead of sitting back and feeling like a victim, you are already up, engaged and looking to make a fight out of it.

GOOD FOR YOU! I am convinced that the best thing you can do to deal with this disease, is carry on regardless and see it simply as a new challenge to be embraced.

Times may get tough (as they do for everyone) and these forums are a treasure trove of good advice, kind hearts and idle banter!

But with all this being said, there is one observation you simply must learn to accept if you are able to keep your chin up; there will forever be more questions than answers. You seem to know this already, but it is worth repeating.

And so… as I feel that i too have been diagnosed quite recently (not even one year yet) and for what it is worth, here my ‘answers’ to your Qs…

1. MRIs are expensive and tough to schedule. You get them as a diagnostic tool and that is that. Unless you are Richie Rich in which case, get one installed in your house! Fact is, things probably won’t change too much. In any event, you can have lesions which cause no symptoms and symptoms due to invisible lesions! And so…

2. Definition of a relapse. When lesions do change to some degree you will feel it (in god knows any manner of ways and severities). My last major relapse (which provoked diagnosis,) flared up and was fading fast over the span of six weeks. I am still not symptom free and sometimes new things pop up and are gone within a few days. The overall picture however, is one of remission.

It is this broader context of ailments and challenges which dictate whether you are remitting or relapsing. As for monitoring the effectiveness of the drug of choice… well drug mechanisms are as unknown about as the nature of the disease itself and so to say whether it is good, bad or indifferent is nigh on impossible to tell. If you feel better, is it coz of the drug, or a natural dip in lesion activity?

All you can really do is keep a diary and observe your ‘overall feelings’.

3. Tysabri - from what i know, this is a hardcore drug for when your MS is going bat shit crazy and nothing else works. It is second line in that it is reserved for those who need it. I hope i am never one of those. For sure in theory, it might sound like a ‘big gun’ drug early on will put you in good standing for the future. But the balance of ‘risks : benefits’ suggests you should try gentler therapies first. Also, there are alternatives to sitting in hospitals wired up to a drip for endless hours, or having to stab yourself with a pen every day. I would recommend tecfidera, but the UK has other pills available. Sooner is better though.

4. MS nurses. I cannot comment on the UK ones as i live in canada. from my experience, they are wonderful, caring and very accessible people. but frankly, with my being a pragmatic bugger, i have very little need of them. in truth, they seem very eager to collect lists of symptoms and drug side effects and thus seem to be as much data collectors as they are counsellors. i might be a bit unfair in saying this, but i know that whatever they are getting paid for this job, it isn’t enough.

5. Headache. could be MS. could be stress. could be not enough water. could be you simply need a paracetamol. treat it as you would without the diagnosis.

good luck. keep up the fight and do your best to simply carry on with life as per usual. MS is an opportunity to live your life to the fullest and to its absolute best!

[Inactive_User]

hi spluff

you have had some very good replies.

just to add my bit - there are injectable dmd’s and oral ones.

tecfidera seems to be the most prescribed recently.

this needs monitoring too with regular blood tests.

the best advice i can offer is that you won’t always feel like this.

ms seems to fade into the background once in a while and then pop back up (boo)

as for relapses - before taking any action the ms nurses will want to be sure that you haven’t got an infection,

urinary tract infections seem to be the most common so keep an eye on your pee. check the colour (dark is bad).

get a urine test done if you are unsure.

keep coming on here with any new questions or for reassurance because we like to help because we have all been there.

carole x

[humbug]

More neuro’s are now instructing more regular MRI’s and coming around to the idea of treating to NEDA (no evidence of disease activity).

Tysabri has its risks but is very effective. There are other effective meds too and its worth reading up on them. Lots of research now suggests the sooner you get on a DMT the better, the more effective the DMT the better. You need to think long term.

Keep a diary of your symptoms and make sure anything you think might be a relapse is documented with your MS team.

Really sorry to hear about your diagnosis. My advice is (when you feel ready) read as much as you can (imo Barts MS blog is by far the best resource in the UK), know NHS England policy, NICE guidance and be as proactive as you can.

You will be ok.

[Alysea]

Not much help, I was diagnosed in September with progressive possibly they can’t tell you right off, Ms nurse I’m still waiting I’ve been referred like 4 times, got annoyed waiting and emailed them, still waiting so not a good experience for me.

sorry I’m not much help sorry about dx.

[spluff]

I am so overwhelmed from all your responses and really appreciate your advice and support Its great to speak with others who understand

I am trying to be strong and gather as much advice and information as possible to try and prepare myself and give me the best chance to be as well as I can be in the future. It is hard to be here and I wish we all didn’t have to be and I hope that one day soon there will be answers to this

2. Tysabri - I think I read somewhere that the first line drugs they offer are not as effective and only reduce relapses by 33% for only 2 years? What happens after 2 years? I really like the hit it hard fast theory and understand the risks involved…

3. Headaches - the headaches are not related to eyestrain I feel (I have had optic neuritis) - I have tried all kinds of pain killers - none work! - I feel there must be some kind of nerve right in the corner of eye near nose and the pain radiates around that area - I have a feeling it could be related to my shoulder/neck but not sure. Ive tried headpacks on my shoulder and neck and they seems to ease the pain. If someone helps me work this one out I will be the happiest man in the world!

4. My symptoms seems worse in the middle of the night - I often wake up with numb hands or my hands feel harder to move fingers… Also I am waking up every morning with a really dry mouth - never had this before - is this MS related?

5. My neuro has said my MS is mild at the moment… My initial diagnosis was 1.2 years ago with optic neuritis and then 9 months later I developed l’hermittes syndrome (still have this 3 months later). I have had sensory feelings for around a year before my optic neuritis. My MRI showed a few new white spots on brain but not too many. They couldn’t find any white spots on my spine (which is strange considering my l’hermittes). Every day I get varying tingling and pins and needles numbness in my hands and feet and the crazy electric shocks when I bend my head down,

[Inactive_User]

A lot has been said about Tysabri, for no good reason I feel. You will not be offered it as a first line medication. You will likely be offered Tecfidera, which is effective in reducing relapses by up to 50-60% and also slows the disability progression. It’s an effective first line medication with very few, more subtle side effects like flushing and stomach upsets in some. Many take it without issue and it proves to be effective. Vitamin D is strongly recommended and Vitamin B12 and Omega 3 oils are recommended based on who you speak to and what your diet is like. Diet can be important, as can moderate exercise to help with fatigue.

The pain you describe could be the trigeminal nerve. It is in the right location for it. It’s nerve pain, so common painkillers won’t really touch the pain. If it persists, then discuss it with your consultant, but you could hold off for your MS nurse.

You seem to have had many of the symptoms that I had upon diagnosis, although I’ve had an additional relapse to the right side with weakness and numbness. I presented with Optic neuritis and L’hermittes.

Your MS nurse will be a lifeline and the medication you choose should help slow the relapses. Much has been done recently in MS drug therapy and there are many more options for us.

I hope you manage to bring your pain under control soon, or at the very least find out the cause.

J

[Inactive_User]

So sorry to hear about your diagnosis. The feelings you describe are perfectly normal and I think we can all empathise with them. I remember feeling a mixture of fear with one of almost relief that after a year of all the diagnostic tests, they’d finally confirmed what it was. My work had been quite unsupportive when I was going through the diagnostic tests (‘it’ll just be a trapped nerve’ said the HR Manager!) and I can remember thinking, ‘this’ll show her’, which was really silly because it was me who was affected but I thought that she may take me a bit more seriously afterwards, which thankfully she has.

Following my diagnosis four years ago, I felt that I wanted to be as pro-active as I could and volunteered as a ‘guinea pig’ with the King’s research team. I’m so pleased I did this and, based on my experience, would recommend it. Initially it was a blind trial of Avonex/Daclizumab but now I know I’m on the trial drug, Daclizumab and have just finished my third year. The team at King’s are wonderful - really concerned and obviously monitor us really closely. I have to attend for my jab once a month, when they ask me a series of detailed questions to make sure I’m OK but every 6 mths (I think), I have a series of tests - physical, blood, manual dexterity, concentration etc.and MRIs every year or two years. Each new symptom is investigated and if I have any concerns at all, they are more than happy to clarify things or pass me on to people who can help.

The other day, I seemed to have a skin infection and it was quickly arranged for me to see a Dermatologist to consider if it was a reaction to the drug (it wasn’t and I was treated very well). I’ve been fortunate not to have any relapses since my diagnosis. Were I not on the trial, I would just have an annual short meeting with my NHS Neurologist and MS nurse. I know it’s not for everyone (and the mthly visits can be a bit of a pain on my day off) but I am really pleased I joined and have made some very good friends there too.

Very best wishes x