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Recently diagnosed and not sure where to turn

Hello everyone,

This is the first time I'm talking about this so hope I make sense. I just came on here hoping to get some perspective, as I have not really known who to talk to since a consultant diagnosed me 2 weeks ago.

I was referred to an MS specialist after roughly a year of symptoms and 2 MRIs showing multiple lesions. In the appointment, the consultant told me that the timeline of my symptoms indicated that the MS is quite active and he therefore recommends starting treatment as soon as possible. He talked me though several different drugs and told me I would be contacted by an MS nurse. He also recommended a lumbar puncture and 3rd MRI, in his words to gain further information to help us choose the most appropriate treatment.

Now it's 2 weeks later and I have received appointments for the lumber puncture and MRI, and a leaflet about drugs from the nurse. I think maybe I was hoping to actually speak to a nurse to get a bit more clarity, and the fact that they've just sent a leaflet and booked me in for more tests is making me slightly hopeful that maybe the diagnosis isn't definitive yet. I don't know what I was expecting really, but I feel like I'm now in limbo.

I thought people on here might be able to offer some experience to help me understand what's going on a little better. What are people's experiences of lumbar punctures? Has anybody refused one and, if so, what were the implications? I don't generally have a problem with medical procedures but this is one that does make me anxious due to a bad epidural experience in the past.

Sorry if these are questions that have been asked before! I'm just a bit overwhelmed by the whole thing and have seen some really supportive threads on here so thought it was worth reaching out.

Thank you for listening x

hi regi

tell the hospital that it is important to have an experienced doctor do the lumbar puncture.

ask your gp for something to calm your nerves.

i think that you are entitled to refuse the LP.

as for the leaflet, even if you had a face to face consultation with your ms nurse, he or she wouldn't make the choice for you.

read up on the drugs, the ms trust do a good leaflet, you can ring and ask them to send it to you.

if you're ms is highly active you could be offered lemtrada.

the side effects may well sound scary but it is  very effective drug.

they all have side effects and different levels of effectiveness, it's a matter of weighing both up.

it is you who must make the choice.

the most basic dmd's are the injectibles, beta feron and copaxone, others too but i don't remember them.

then come the new oral therapies : gilenya, aubaggio and tecfidera. (again there are others)

the big guns are tysabri and lemtrada which are by infusion. (again there are others)

i started on copaxone (daily sub cutaneous injections) but got bad site reactions so switched to tecfidera.

both were easy to take.

get reading!!!

Hi Regj I had a lumbar puncture last week - was EXTREMELY nervous! Have had 3 children but never had an epidural so didn’t know what to expect. Kind people on this site put my mind at rest - saying that the thought is worst than the deed.. and in my case this was definately true! It was nothing more than a tad uncomfortable. Drink coke before and after - and touch wood your experience will be the same - I had no headache following it either. Good luck x

I have MS

Hi Regj

To be honest, I don’t think you need the LP or the 3rd MRI. The specialist has decided it’s MS, he has based his diagnosis on the lesions showing in the MRIs, your symptoms and his neurological examination. 

It sounds like he’s going for belt and braces with the lumbar puncture and the 3rd MRI. There are clues I believe in the CSF which don’t just say, yes it’s MS or no it’s not. The basic thing they are looking for is Oligoclonal bands. But some people with MS don’t have them in their CSF. So for that reason, if you didn’t want the LP, refusing it wouldn’t change the diagnosis. There could be other things the neurologist is able to tell from the LP. But assuming you go ahead, make sure you lay down flat after the test for at least a couple of hours and drink plenty of real Coke, the caffeine and sugar help you to not get a vicious headache. So take a bendy straw (so you can drink coke while laying down). 

In terms of disease modifying drugs (DMDs) have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/m... The idea of DMDs is that they reduce relapses and the severity of relapses. But every drug has expected relapse reduction rates and side effects. So it’s a case of getting the drug that best attacks your MS, fits in with your life, and has an acceptable risk of side effects. Assuming your MS specialist is getting further tests in order to check exactly how active your MS is (ie, how many and how serious they might be), chances are you will be offered Lemtrada or another of the drugs suitable for more active MS. 

It’s a shame your MS nurse has just sent you information rather than talking through options. I suggest you familiarise yourself with the various drugs available and talk it through with the neurologist after the next tests. Be guided by him, but make sure that you are happy with the choice you make. After all, you have to take the drug and live with any side effects. 

Best of luck. 

Sue

Thank you all for taking the time to reply. The information was really useful. I decided to go ahead with the lumbar puncture as the risks were relatively small, and drank loads of coke as per your advice so hopefully no headache!

As for the treatment options, now I'm going to stop procrastinating and start reading.

Thank you so much for the support.

just been told i have aggresive ms i am at loss how do you cope with this

I'm not sure Tracey, still trying to get my head round it all. I find it helpful reading the discussions on here as it just makes it all feel a bit more normal and less scary. When I speak to friends and family it all seems awful, but on here I am reminded that there are lots of people out there dealing with the same symptoms, fears etc.

Have you been given information about where you can go for support?

I am sorry you have to go through this. I know how you feel. Stay strong.

tracey

aggressive ms probably means highly active.

have you been offered a choice of DMDs {forgive my lack of question marks - the key fell off}

i would assume that they will want you to try an aggressive drug to fight it.

try your utmost to stay calm as stress only makes it all worse.

you are at war with ms and if you have big guns on your side, that is good.

carole x

I have MS

Tracey

As Carole said, aggressive probably does mean ‘highly active’. 

A diagnosis of MS is scary enough on its own, without being told it’s more aggressive than ‘normal’. 

The differentiation of active means that you have a bigger choice of disease modifying drugs (DMDs). As with all drugs, the more potential benefits has to be weighed against the risks of side effects. 

Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid The ‘Highly Effective’ Lemtrada and Tysabri are generally only prescribed for people with very active MS, with Tysabri, it’s often only after ‘failing’ on one of the other DMDs. Your MS nurse, once you’ve been given one, will help you to get through the decision making, and with symptom management.

The important thing is to not panic about the label of aggressive and remember that there are drugs to fight off relapses and a whole life ahead of you. 

Keep talking to us on here, we’ll do our best to help with your fears and questions. 

Sue

I have MS

Tracey, Regj

As a relatively newly diagnosed person I just wanted to drop you a message to say that you will get through this bit.  My diagnosis came completely out of the blue -  the labels and what they could mean terrified me.  I catastrophised and assumed the worst possible outcomes, tried to get my boyfriend to leave me and looked up costs for dignitas in case I needed a trip to Switzerland in short order. 

Through this board (and Shift MS) I have learnt that MS is not the disease it once was: there has been significant progress over recent years in reducing relapses, with new and more effective drugs now licenced and more drugs in the pipeline.  The updated ABI guidelines on treatment should also mean that people are getting earlier access to these drugs - and are therefore better equipped to preserve neural reserve.  There are also more drugs and complimentary therapies available for dealing with MS symptoms than before.

Whilst my initial relapses were "mild" (numb toes and groin, vertigo) my early MRIs showed my MS clearly had my CNS in its sights.  I had lesions throughout my brain, on my brain stem and all down my spine (every part of the C-spine save C4 and 2 lesions on the T-spine). A second MRI 3 months later showed new lesions. It was the fear of what this could mean for my prognosis that helped me accept the risks of "aggressive" treatment and to embrace lifestyle choices to help me keep as much of my neural reserve as possible for as long as possible.

I decided I was more scared of MS than of the side effects of treatment - and jumped (numb) feet first into lemtrada as my first DMD.  I received Round 1 in August 2016 at Kings College in London and Round 2 in August 2017.   The treatment was fine and so far I've had no ill effects (although I'll need to be monitored for a number of years yet).  Positively, I've been relapse free and my latest MRIs show I have had no sub-clinical progression since starting treatment (and some of my lesions have reduced through natural repair now the brain is no longer under attack).  I've just returned from a 3 week honeymoon exploring beautiful Namibia (as the boyfriend who didn't leave me is now my husband) to a promotion at work  - and life is feeling bright. I've also decided to celebrate the anniversary of my treatment (next month!) and feeling so fit and well with a 100km walk along the South Downs to raise money for the MS Soc.   Whilst none of us know what tomorrow holds, building a savings account for Switzerland has worked its way back down my list of financial priorities (someway behind a new car, a puppy and a healthy happy early retirement!)  

So what I am trying to say is that I now describe my MS as a shadow that is always with me - and credit my treatment for keeping the sun high in the sky so that it casts little shade on my life.  At least for now - and that is what counts.  Hopefully there will be a cure or better treatment before my sun starts to set.

The period after diagnosis is brutal and scary (and it feels like you have a whole new language to learn).  There are a number of choices that need to be made re. neuros, DMDs, lifestyle changes, supplements etc etc. There is no right or wrong choice for anyone - we all have different risk appetites and this disease is different for all of us.  The only right choice is one that feels right for you.  In the meantime, cry/scream/eat chocolate/drink wine/punch things - do whatever it takes to make yourself feel better - but most importantly be kind to yourself - and keep hope.

I hope that at least some of that waffle helps?  Good luck with your choices.  you will ge through this bit and you will be grand.

xxxx

I have MS

Congratulations on the nuptials Katy. I hope you had the honeymoon of your dreams. 

You have always written such amazingly positive posts on the benefits to you of Lemtrada. I’m so pleased that your treatment has worked so well for you and that you are still popping in an sharing the benefits of your knowledge with others. 

(Well done on the promotion front too.)

Sue

Katy, as the wife of someone recently diagnosed can I than I you for taking the time to write your journey. It's helped ground me significantly just by reading your words.

I have MS

 Curious - that’s so lovely to read. Make sure you take the time to look after yourself as well as your partner. Xxx

Katy, thank you so very much for your post it has made me feel a lot better after a really bad day. You are an inspiration x

I have MS

You are very welcome Regj.  Good luck with everything. X

I have MS

Thanks Sue! I found the boards so helpful in my first few months (and still do) so it’s good to be able to contribute! Xx