Last reply 9 months ago
Newly diagnoised

Hi all, ive been diagnoised for about 3 weeks now, im just wondering where does it go from here? Late last year i had a attack and was off work for 3 months due to having un ordinary symptoms which involved my co ordination, speech, sensation.. i just felt helpless. After having numerous mri scans and blood tests the doctors pinned it down to two things, a possible ADEM attack or if a attack happens again they will diagnoise me with MS. I have just recently had another attack and symptoms and slowly disappearing but i still have the tight feeling in my face but everything else is ok. My questions are where does it go from here? How can you tell what type of MS you have? Any help and comforting wilp be highly appreicated.

Thabkyou!

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stumbler
9 months ago

@dan37 , you’re probably still in a state of shock at the moment. It’s a big diagnosis that you have received and you slowly need to learn about this condition, so that you can understand the way forward. So, I’m glad you found us here at Shift as we can help with this.

Anyway, back to your questions. I would presume that you have Relapsing Remitting MS (RRMS), as you have had relapses and then you have recovered.

There’s some useful information about RRMS here :-

https://support.mstrust.org.uk/file/store-pdfs/Relapsing-remitting-MS-WEB.pdf

So, where does it go from here? Well, a lot of that is down to you and a lot is down to your medical support.

You can adopt a healthy lifestyle, if you do not have one at the moment. A healthy, balanced diet, a moderate lifestyle (avoiding extreme highs and lows), some exercise (dependant on your fatigue levels at the time) and avoiding stress.

The last point, stress, is very important as it is felt to be a major agitator of MS.

Your medical support (Neuro, MS Nurse and Doctor) should provide advice and guidance in managing your MS from a treatment and ancillary health services perspective.

Your Neuro, apart from delivering the diagnosis, should have given some indication of the way ahead for you. This may have been delegated to a specialist Nurse Practitioner, someone who specialises in caring solely for MS Patients.

I would have hoped that you were given an introduction to your MS Nurse and an appointment being arranged. Your MS Nurse will discuss the management of your MS, and your symptoms. There should also be a discussion about adopting a Disease Modifying Therapy (DMT).

As for a prognosis, well MS is an individual condition. No two cases of MS are the same. But, now is not a bad time to be diagnosed as there are a range of DMTs now available, with more in the pipeline. So, a future involving a wheelchair is no longer a definite.

It would be useful if you could fill in some of the blanks regarding how your Neuro left this diagnosis with you, and the next steps suggested.

In the meantime, continue to do your research into MS. But, avoid “Dr. Google” and focus your attention on creditable websites, e.g. the MS Trust, MS Society, etc..

And, do feel free to post any further questions you may have.


grandma
9 months ago

Dear Dan37, as Stumbler says it’s a shock and everyone is different. Don’t. rush around changing things, you will learn in time what needs to be altered, be it eating habits, things with kids, sex life, partners, job changes, I could go on but you get my drift, I am a veteran of 24 years since diagnosis and I’m still here, fighting MS and Mr government where necessary but not getting stressed about it cos that’s no.good for the MS. Keep your chin up, we’re here for a question, a moan, a cry or a celebration😍 Jill


dan37
9 months ago

Thankyou for your comments, tbh i am still in shock of being told and been saying to myself ‘why me’ but its life at th end of the day and being positive is the only way at the moment. I have another constulation in july and have had a telephone phone call with a MS nurse. I have been finding steriod tablets have been helping my symptoms alot. I am currently on week 3 of my 7 week cause of taking 7 tablets a day amd decreasing by 1 tablet every week untill im down to 1 tablet a day then none. I have found prednisolone (5 mg) have helped with my symptoms but i can be fine for roughly 4 months then symptoms worsen. I dont know what you mean by DMTS but i am sure i will be looking into it. Hopefully when i go back to the MS nurse she can help me with the right treatment to take.

Thankyou for the time to reply to my message. It has helped me massively to keep positive as with everything else in life atm its going so great.

Thankyou


stumbler
9 months ago

@dan37 , I’m confused by the Steroid strategy that you have been given. They’re normally prescribed as “high dosage” Steroids, where we are given a massive hit over 3-5 days :-

https://www.mstrust.org.uk/a-z/steroids-methylprednisolone

I’m not sure whether “drip-feeding” the Steroids would have quite the same impact as the big hit approach. Section 1.7.7 of the following NICE guidelines is my rationale :-

https://www.nice.org.uk/guidance/cg186/chapter/1-recommendations

This does make me question your Neurologist. I wonder whether MS is not his favourite area of Neurology and perhaps there is an MS Specialist that covers your area. Perhaps you can ask your MS Nurse about this as they should know the answer.

Disease Modifying Therapies (DMTs) are drugs to alter the course of MS, by reducing the frequency and severity of future relapses. As ever, more information here :-

https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf


dan37
9 months ago

Sorry i havent explained myself properly. I Was on a 5 day course of steriods when i had my very first attack but i have found when my symptoms worsen if i take prednisolone (5mg) it helps to control my symptons and gets me feeling back to normal but i have been advised to go on a longer course of this, which i am now on week 3 taking 5 tablets a day then decreasing by 1 every week untill i have none, if that makes sense? Im at that stage of i dont know whats right for me yet as in July i will find out.


vixen
9 months ago

Hello @dan37 I’m glad that you’ve found Shift early on. There are lots of people around your age that are on Shift. My advice would be to concentrate on your recovery for now, which you’re doing through steroids. When you feel better, mentally and physically, things will become a little clearer. I was diagnosed RRMS a year ago and really don’t understand what this means, as every day is different. But I’m comfortable with my daily routine now and I’ve learnt to live in, and enjoy one day at a time. It’s great that you have an MS nurse, depending on where you live not everyone has this access, so this will be of great value to you. Once you’re better I’m sure the neuro team will have a discussion with you around treatments, and there are plenty of posts around these! All the best, focus on recovery and don’t push yourself to do things at this time.qll in good time x


dan37
9 months ago

Thankyou @vixen it means alot!


stumbler
9 months ago

@dan37 , your present course of Steroids is in contravention of the Guidance provided by NICE. Who was it that prescribed it, your Neuro or GP?

Yes, Steroids are used to address the symptoms of a relapse. It does this by addressing the area of inflammation on your Central Nervous System (CNS) that is causing these problems. Once the area of inflammation is addressed, the Steroids keep working with you to recover the damage (symptoms) caused.

Whilst I am not medical, I believe that anything less than a high dose hit just isn’t effective.

Steroids do not alter the outcome of a relapse. They just make that outcome happen quicker.


daybyday
9 months ago

MS is one of those things that, for good and bad, can conjure up a lot of questions and thoughts. But as others have said, take your time to concentrate on your health, to heal, to figure out just what your days might look and feel like, or require. Don’t try to rush anything. Listen to yourself and be kind to yourself as well.

I was diagnosed in summer and I have been making incremental adjustments for various things since. Learning to be okay with leaving an event a bit earlier to go home and rest. Adjusting some of my food habits. Taking several supplements for a couple of numbers my doctor wanted to see higher. Recently, I write a small note on my calendar (on my phone or otherwise) on how my energy was on a given day. You’ll learn your own process in time.

Seeing docs and nurses as your care team are important too. And if you have questions – never hesitate to ask them. There are no questions too insignificant when it comes to health.

This is a beginning of a journey none of us asked to be on, but we’re here, so the path now is to take care of ourselves and our own individual needs. Your feelings are important and shared among many. Welcome.


dan37
9 months ago

@stumbler i was prescribed by my GP because i felt they helped me recover but that was only for a week and then i was fine for months then went down hill again so the GP has said about doung a longer course of 7 weeks and i am on week 3 taking 5 tablets a day.. thankyou for the supportive comments it means alot. It does suck being on this end of the stick but we all have to remain positive and keep batting!


stumbler
9 months ago

@dan37 , that explains it. GP’s aren’t the best placed to try and manage MS. This is the province of the Neuro and your MS Nurse.

Trickle-feeding steroids into you doesn’t help, which is why the NICE Guidance says a high dose in a short space of time. This protocol is alien to a GP!

Additionally, your Hospital records will be out of synch. Steroids shouldn’t be given more than twice a year, so your Neuro/MS Nurse may be working with incomplete information on future decisions.

You need to rely on the MS Nurse more, as they have the ear of both your Neuro and your GP.

It’s all a learning curve. 😉


sarahjay
9 months ago

Hi Dan, just wanted to say hi and that it’s not necessarily going to be as bad as it feels to you right now. I was diagnosed roughly three years ago and the first year was horrible, dealing with the fear of the future, experimenting with my diet and deciding what drugs to try. MS was pretty much all I thought about and I often felt tired, lethargic and depressed. I’m on techfidera now and haven’t had any new symptoms since my diagnoses, I’m still well and it’s now fading into the background for me mentally and physically. My right leg and ankle gets tired sometimes, it used to be that I could feel it after walking for 15 minutes but yesterday I walked for 4 hours and it only got tired by the end. I started weekly swimming lessons a year ago which I think has helped massively with my overall health and outlook. I picked swimming because it was recommended by my osteopath who was diagnosed with MS 45 years ago, ditched his stressful job, took up swimming and has been well ever since. Maybe just a coincidence but it was a good enough one for me! Plus you can’t trip over your feet while swimming. 🙂 I can also recommend hypnotherapy and midnfulness to deal with the fear and an elimination diet just to check if there’s anything you’re eating that your body doesn’t like. Good luck.


isaacson72
9 months ago

I wonder if the low dose steroids make you feel better because they pump you up and make you a bit hyper? I know when I’ve taken low dose steroids for whatever reason in the past (pre-MS), I did feel like I could conquer the world. Maybe that’s why you feel a bit better, although I agree with Stumbler, it isn’t doing anything to help the MS as it’s the high dosage hit that helps.

I was diagnosed a couple of years ago and I’m still trying to adjust to it. You learn things all the time. Relapses are one thing, but I’m also just learning about the progressive side of it… it’s like it just keeps on trucking, even when you think all is well & you have no active lesions. It’s a little scary but the advice given on this site is wonderful! Big things – avoid stress and try to keep a positive attitude. And vent all your concerns here!

Good luck to you. xo


grandma
9 months ago

I just wanted to say I’m so glad Sarah jay mentionef swimming, it really is the best all round exercise you can do, it keeps everything going, you can do things in the water you can’t do on land, and you don’t even have to be able to swim, just floating in the shallow end, or hanging on to the edge and moving your legs around, it all helps. I know I’m a bit of an advocate for swimming but give it a go😍

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