Confirmed ms- no lp. Which treatment to go for ???

Neuro confirmed today on my 2nd appt after one MRI that I have ms. Not the mildest type but not the worse. Enough to need treatment. She said I’ll see an ms nurse who will discuss treatments with me. My symptoms are every day! Off balance, achy, fatigue,urine/bowel urgency. Can anyone tell me what oral treatments have been successful for you please ?

Thank you

Emma

Whether it is successful or not is a contentious point. Safe to say that whilst i have had no relapses since starting TECFIDERA, this is not to say that the same might not have been true had i started on a different drug or none at all!

Unless something is supposed to cure a disease or remedy symptoms (and Tecfidera claims nether) efficacy can be speculated upon.

However, clinical trials suggest Tecfidera is the best oral DMD out there (the original poster specified ‘oral treatments’) and the side effects (for me at least) have been mild to virtually nonexistent.

Good luck.

Thank you for your reply

I will research that drug - the best would do me just fine :slight_smile:

Hi Emmakay

Sorry to hear about your diagnosis. It will take a while to get your head round.

Meanwhile have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

It lists all the various treatments and might be quite helpful in guiding you towards the one which is best for you and your life.

As you have been given the contact details of an MS nurse, get in touch with him/her and get their opinion on your options.

Best of luck. I hope you get started on one soon. Avoiding relapses is the key to retaining health and mobility. In your situation, you should also start looking at what exercise you do and/or are able to do. Getting your core as strong as possible is vital to a future which you need to remain as able as you can.

Sue

Thank you for your help and advice

Unfortunately I have done no exercise other than walking (which is tiring) for almost a year. I used to run miles and miles and do workouts at home.

but I’d really like to be able to do something. It’s just I don’t feel safe, not only do I not have the strength but I have lost the confidence. I did try yoga but the oap’s put me to shame !

ill work on it thank you

Maybe once you get an official diagnosis, you can also get a referral to a good physiotherapist. Together you can work on an exercise regime that will help you to improve strength and stamina.

There might also be an MS therapy centre near to you where they run exercise classes. Pilates is supposed to be one of the best for building core strength. Or swimming regularly will help. If nothing else, you can talk to your GP about referral to physio, hydrotherapy, maybe local authority gyms.

If I were newly diagnosed today, I think the most useful information I could have been given is to work on building core strength. Mine has been rubbish throughout my life (!) and when physios first mentioned ‘core’ I had no understanding what they meant! If you are unlucky enough to have potentially disabling relapses, you need a good core to regain abilities. I didn’t and I’m now quite disabled. Of course, I was also unlucky in time as well. You have access to DMDs that just didn’t exist 20 years ago.

Sue

That’s all great advice thank you

I am sorry that you were unlucky with time and didnt have that advice back then.

This MS rubbish is just a pain in the backside! Invading us without an invite!

Hi Emma,

What type of MS have you been diagnosed with? You need to know what type it is to treat it properly.

That`s my understanding of it.

Based on your symptoms (which are the same as mine was) it sounds like PPMS but that`s just my opinion.

If it is. I just take Vit D3 and Vesicare 5mg (for bladder frequency/urgency).

How do they confirm the type?

symptoms? Scans? Time between problems?

Scudger is there a reason you are not taking any other medication?

Hi Emma,

I think with PPMS the drugs are not required as much as RRMS. If I can avoid the drugs I will as all I keep reading and hearing about are the bad side effects. To be honest my symptoms are quite mild (at the moment) so I am only taking supplements if and when I need to. I`ve just discovered Magnesium as recommended by a few people here (for RLS) and I am now getting my 8 hours beauty sleep (undisturbed). Up until now I was up most of the night drinking tea and thinking too much. I take Vit D3 because my MS nurse told me to.

As I`ve said before, I have had my symptoms for 15 years, maybe longer and being diagnosed last year has answered many of my questions.

I think you should be told very soon what type of MS you have.

Sorry to hear your news but at least you are in treatment now! Hope all goes well…still a waiting game and hopong for a miracle for me…

Hello Emmakay

If the neuro is suggesting you talk about disease modifying treatments (“DMT”) then it means that he thinks you have RRMS. This is the type of MS most people (c.80% I think) are initially diagnosed with (especially women). RRMS stands for “relapsing remitting MS” and basically means you have attacks of symptoms (relapses) which you may recover from over time (remittance) either in full (hopefully!)or in part. Relapses may be mild or severe - and the damage they cause could be permanent (and continue to be felt even in remittance) or temporary - or prone to flare up when you are hot/cold/stressed/tired etc.

The other key types of MS are PPMS (primary progressive MS) and SPMS (secondary progressive MS). Basically, SPMS means that a person who initially had RRMS is no longer having periods of new MS activity (new relapses) or times of remittance and their MS damage is just progressively getting worse. PPMS means that a person’s MS never relapse/remitted and was progressive from Day 1. As mentioned above the fact that you have on-going symptoms which do not appear to have abated for a period of time does not mean your MS is progressive - it may just mean that your body is taking time to recover from a relapse even when you are in remittance. There is no real hard and fast to tell which type of MS someone has (although a university in Australia may be close to developing a blood test I think, this isn’t available yet) - just time and clinical experience and observation.

From what I have read, I’m not sure there is a better type of MS to have. Relapses can be mild or sever, short lived or leave permanent damage - and create a cloud of uncertainty. Progression can be fast or very slow.

The one thing that may make people want a diagnosis of RRMS over SPMS/PPMS is access to DMTs - and the sense that there is at least a way of fighting back and helping your prognosis. At the moment all DMTs licenced in the UK are designed to reduce the number of relapses someone with RRMS has (e.g. tecfidera is a “more effective” DMT and is seen to reduce relapses by c.50% (although the figure could be higher or lower than this in any one individual depending on whether they are a responder or not)). As such, DMTs are not licenced for people with SPMS/PPMS.

So if your neuro wants to talk to you about DMTs then he is prepared to treat you as having RRMS.

FYI - there is a new drug called Ocrelizumab/Ocrevus which has just been licenced in the US for PPMS. Trials have shown that it can help slow progression by c.25% (I think). It is not available in the UK yet (where it is being trialled for all sorts of MS I think (it has also been shown to be highly effective at reducing relapses in people with RRMS)) - but it is great there there will hopefully soon be something for people with progressive MS.

Hope some of that is helpful? I was only diagnosed June last year and can fully well remember trying to get my head in the game for what it all meant. I was fearful of a diagnosis of progressive MS (whilst my symptoms are close to non existent (occasional numb toes) I had a rather busy brain stem and a number of spinal lesions) as I really wanted to access a DMT(which I did, and opted for the rather hard core and risky (but highly effective) Lemtrada. Not oral, but happy to discuss if you think that may be an option for you)).

Kat

Thank you for all the information Kat, it is really helpful to us newbies.

Thank you so much kat for you detailed reply. I am grateful. I took a jump and rang the ms nurse today- I said that I am being referred and does she think there is a long wait?

She took my details- called me back and said neurologist wants me in asap so I’m booked to discuss treatments in a couple of weeks.

Hopefully things can look up, i had a bad morning but a good afternoon :slight_smile:

i am trying to relax and I am off out tonight for a facial!

i am going to look in to lemtrada and possibly call on you for more advice

Thank you again for your help and I hope that you fe keeping well yourself :slight_smile:

Yes hopefully in 2 weeks I will have tablets to take .

I hate waiting! That’s why I called ms nurse myself today.

what stage of waiting are you at?

Had 1st mri showing brain and spine lesions lots of them. Waitinh for repeat mri bloods and lp on 6-8 wks .i am certain its ms though although praying it is not and lesions will have disappeared ( that doesnt happen though does it!

Emmakay, Guzlover,

You are very welcome. I spent a lot of time on the board trying to get my head in the game early last year and found the support of those who had gone before invaluable in coming to terms with the diagnosis and making decisions I felt I would be able to stand behind on a “no regrets” basis about my lifestyle and treatment in the longer run. Its nice to be able to play it forwards.

As you ask, I am keeping very well at the moment. One positive thing from MS is that I have learnt to appreciate this and not take it for granted. Every gym class, parkrun, and hike feels even more of a victory than it did before - metaphorically giving my MS two fingers. Ironically, I am faster and stronger than before the diagnosis. Fingers crossed DMDs, selfcare and luck keep me this way for a wee while yet xxx

Worried123 I am so sorry. From my understanding no they do not go away but I am not factual on that. I didn’t need a lumbar puncture- my ms must be clear as day. I have. I have and cried. Why me ? I was fit and healthy. I’m 32 I’ll need a wheel chair. I’ll need care! And yes - although I still get upset after just a couple of weeks I am actually feeling a bit better. I think it has helped that people actually believe me that I do have a problem. When people can’t see the symptoms I thought they just thought I was exaggerating. Now I can be taken seriously. And if you said that to me 2 weeks ago, I’d have cried and said go away!

So please- just think, if you do have ms, worrying will not take it away, so try and relax and love yourself for who you are x

This is where I really miss the ‘like’ button! If I were starting out again, Tecfidera would be my choice, for sure.

Alison