Hello everyone! I’m sure you come across similar posts the whole time, I’ve read quite a few here myself. At the moment though I feel I need some support so I’m sharing as well. I’ve been diagnosed with relapsing remitting multiple sclerosis today and I just feel so shocked. I’m in my early twenties and I found out I have this by optic neuritis on the right side of my eye! After all the testing they indeed found those lesions and then spinal tap finally confirmed it what was already highly suspected. I will have to discuss about treatment options next week. I’m very glad about my doctors equipe but I can’t deny feeling a bit lost. They told me not to search anything on the internet and to just ask them directly or mail/call them which I’m finding extremely hard to do but I think they are right. Well how can I accept something like this? For the moment I’m definitely more worried about the psychological impact. Physically I do feel fine so I’m lucky! I can definitely notice my body feeling tired or electric sometimes but maybe that’s just anxiety. They told me I do need to pay attention to how my body feels. Psychologically though… How does one get used to it? How do you tell other people? How do you explain to others when dating? If someone wanted to share their experience I would kindly suggest them to do so. Thanks for the attention
You know, it doesn’t matter how many similar posts we read, for you, this is all about you and your life. So in a way, it’s as individual a post as you and your MS are/will be.
I am sorry you’ve been diagnosed with this horrible disease and had to find your way here. But you are welcome to the forum regardless.
I totally understand the medical professionals telling you not to look things up, but to ask them for information and guidance. But that is easy for them to say and difficult for an intelligent and curious human being to do. We, on this forum, do advise people not to randomly google symptoms as not every site is reliable. In fact, I’d also suggest you take everything individuals on this forum tell you with a large pinch of salt too. We can only tell you what we’ve experienced, been told and/or read ourselves. However, you can rely on the information you get on this site (look at the tab at the top marked About MS) and on the MS Trusts webpages (try typing in MS Trust and whatever symptom or therapy you want to know about, an example would be Fatigue).
Another example is this: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid It’s an aid to help you learn about disease modifying drugs (DMDs). It may help you to be familiar with the various drug treatments available to people with RRMS in advance of your conversation next week. The aim of DMDs is to reduce relapses and the severity of relapses. Your diagnosis appears to have come about following a relapse which manifested as optic neuritis. You can judge DMDs by their benefits (average relapse reduction rates) and their costs (potential side effects).
The chances are, you will be given a choice of a few different DMDs. The choice at the moment is likely to be limited due to Covid (the more a drug suppresses your immune system, the less likely you are to be offered it, also, the more invasive treatments and those which are only given to inpatients will probably be off the table at present). One good option that you are almost certain to be offered is Tecfidera, so look at this drug amongst the many others.
Once you are taking a decent DMD, relapses will hopefully be few and far between. You will probably find that you retain your health and physical condition for many years to come, so won’t look as though you have MS. Don’t anticipate serious disability to afflict you for many years, or even, at all.
This means you could find yourself hardly needing to divulge your MS to all and sundry. It’s as well to tell your employer in case you need to take time off while you get used to the condition and whichever DMD you take as well as for medical appointments. Telling your family and friends is something that only you can decide when and how much to share. You will find some information about telling people here: https://www.mssociety.org.uk/care-and-support/everyday-living/family-and-relationships/telling-people-you-have-ms/telling-your-family
In terms of meeting new partners / dating, again that will be a matter of timing and individual situations. You might find it easier as time goes by. Then again, life, relationships and dating will probably all change post Covid!!
We on the MS forum are generally happy to answer questions about our own experiences with MS, there are plenty of other people in a similar situation to you, being newly diagnosed. There are also the old timers (like me!) who have had years of MS experience to fall back on!
Best of luck, don’t try to absorb everything all at once, you may find yourself feeling really quite angry and aggrieved that this has happened to derail your life. That’s not unusual. Don’t attempt to ‘accept’ or come to terms with MS in a hurry. It’s a bugger of a thing, and I for one am still angry 23 years in.
Ssssue has provided some great info, diagnosis time is a very big deal. The positives are that you now have a name for stuff that has caused you some issues, you can discuss options with medical professionals and you can start to learn how to manage your new ‘normal’ . You will learn a lot about yourself and others, and despite any bad stuff you will be amazed by how resilient you are. This is a good place for support , empathy and info. Another site is called ShiftMS, where there are some youngsters and some good videos.
All the best
Yes I was shocked to this is only natural.
You have already been given some excellent advice. I would like to add in to have a read of NICE guidelines and MS. This is because it is the doctors bible with rules they should all be following. However it is a heavy read I suggest take it in stages.
Also if you are driving you must by law inform the DVLA. They will ask your consultant if you are still safe to drive and if so you will be issued with a 3 year licence - this was a shocker for me - but my licence is still going.
Hi all, I was wondering if anyone could give me some help/ advice. I’ve been under the neuro team at charing cross now for a year after suffering from leg pain, tingling/numbness. I had an MRI scan which detected a lesion on my spine. I had a 2 scans on my brain, 1 showing a potential lesion and the other not showing anything, therefore they are re doing all tests this year to detect any changes. I haven’t been diagnosed with MS as of yet, however my consultant has stated she is treating me with MS and has given me a diagnosis of CIS, I was wondering if anyone has had this? Since last year my symptoms have progressed, I get a lot of spinal pain, electric shock feelings throughout my body, and I’m currently suffering with ovarian cysts which seem to be having an affect on my neuro pain. Is anyone able to give me some advice on managing this or even if my symptoms are common. Thanks in advance. Reanna
I thank you each one of you for commenting on my post:) It means a lot really! It does take a while do get used to it but I see I’m not alone, I see a lot of brave and inspiring people living with this and that gives me strength. Thank you from my heart!
Hey there! I’m sorry you are going through this it seems though. I suggest you to post a new topic so more people will read this! Wish you the best
Thank you. So sorry, new to this & trying to understand it.