Hi, I was officially diagnosed with ms on Tuesday, I have been going through the motions since July and thought I had excepted the diagnoses before then because I had been told I most likely did have it in July but actually hearing those words seems to have really effected the way I’m feeling, I don’t feel like me anymore, I can’t stop thinking about what might happen now. I have had a numb arm fo a couple of weeks as well and now I’m thinking is this a relapse because the first symptoms I had was numb legs which I got put on steroids for because it was a relapse but who do I contact now I have officially been diagnosed, I am really confused by the way the diagnoses has made me feel.
Hi Julie Anne
sorry that you have involuntarily joined this exclusive club of ours.
It takes time to sink in.
then time to get used to this new body.
Keep your GP up to date with new symptoms and for help with symptom management.
It’s worth letting your MS nurse know as well,.
I know first hand the confusion you are feeling, On the plus side you are no longer in limbo but on the minus side you are having to come to terms with having MS.
You will have times when your legs refuse to behave. Bladder torments you and a myriad of other body parts acting up.
Your safety is of paramount Importance so if you are unsteady on your feet get a walking aid (a stick/cane/crutches).
Keep looking on here because you will learn a lot from other peoples experiences.
Feel free to ask advice because most of us like to be of help.
Look after yourself
Carole xx
Hi Julie and welcome aboard this friendly ship!
Being told you actually do have MS is quite alarming. Most people have a bit more time to get used to the idea than you did…but even so it is a shocker!
Different folk go through similar symptoms but not necessarily in the same order. There is no set pattern, even within the same types of MS. It will take a while to sink in and find your own way of coping.
Providing you have good support and get used to the right meds, things will feel more settled.
Life with MS can still be good, just different.
Everyone should have access to an MS nurse…ring your GP surgery and ask about this.
Sounds like you have the RR type of MS. There are some good meds to slow progression and reduce relapses.
Well do our best to support you here.
Boudsx
Thank you so much for your replies, I haven’t been appointed a ms nurse yet, would you be able to tell me if new symptoms mean my ms is getting worse and whether I will get the sensation back in my numb arm ?
Hi Julie Anne
there is no way to second guess MS and what it will do next.
Your MS nurse who works closely with your neuro will guide you on this.
what you must do is to live the best life that you can.
One of these days you will find yourself feeling happy, Hurray you are still you.
carole xx
I’ve literally just got back from the hospital having been diagnosed today.
Nothing has changed. Everything has changed. It’s going to take a little while to get used to this.
Hi Julie Anne, I’ve also recently been diagnosed with RRMS in July 20. I had numbness in my right hand prior to my diagnosis last July, this actually started my journey so it does sound like a relapse, I was advised a relapse can last between 24 hrs and 3 weeks. My numbness lasted about 3 wks. My GP first suggested MS in May and I was formally diagnosed in July. I managed to stay in work, albeit I was working from home but felt I needed some time off work to get my head around things. I was also referrred for Counselling through the MS Nurse and this helped me a lot.
Take care
Lesley
Hi, I’ve also had the dreaded news today. I’m feeling really down about it as I’m in my mid thirties and have 3 young children that depend on me and I want so badly to be happy and healthy for them. I’m worried about how it will effect me as my mother has MS and I see how she sufferers. I’ve been offered tecfidera any advice I’m so worried about taking it.
Hi Sofiac, I am really sorry to hear that, it must be horrible for you after seeing your mum suffer, hopefully with the new medication that is available today things will not be as bad now. I have been offered tecfidera as well and I have decided I will try anything that might help to keep things at bay and slow it down, it is going to take a month to get the medication, please let me know what you decide and how it goes.
I’m worried about the side effects and the risks. Are you going to give it a try?
Yes, I’m more worried about what will happen if I don’t try and I think all dmd’s have side effects and risks but I can’t live with this and not try to slow it down at least.
Well covid or no, there are still people getting diagnosed with MS almost daily. MS doesnt care about covid…its funny (not the haha kind) but whilst folk cant get a GP appointment, or a dentist one, or a podiatry one, they can still get told they have MS. Its a relentless little sod!
I`m sorry our membership is growing but like I said, MS is a relentless little sod!
To newbies and those who fear a diagnosis of MS is round the corner, I know it is frightening news, but there are oldies amongst us here, who have had MS for 15, 20 and more years…in my case its 23......youll still be you…with a difference.
Look after yourselves.
Granny Boudsx
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So, there’s 4 of you, Julie Anne, KA, LM20 and Sofiac. All very recently diagnosed.
It could be a better gang to join, maybe one of your choosing, but you are all very welcome to the club.
Some facts about MS: about 85% of people diagnosed have the relapsing remitting type. (The other 15% have progressive MS, either primary - so progressive from the outset; secondary, where the individual started with RRMS but over time this became progressive, with no relapses; or progressive relapsing, still having occasional relapses, but with general progression too.) RRMS is characterised by relapses (sometimes called attacks, or flares), when some part of your nervous system comes under attack by the cells of your own immune system. It’s an ‘autoimmune’ disease, one of many where the cells of the immune system; normally supposed to fight off enemy invaders to the body (bacterial infections or viruses) instead decide to have a go at the healthy cells. In our case, the cells attacked are the myelin, which coats the nerves of our central nervous system. It’s kind of like electrical wiring coated with plastic to protect the wire, if it gets nibbled by a mouse.
Relapses can affect any part of you, from having a dead arm, to pins & needles in your leg, spasms, cognitive malfunction (what we often call ‘brain fog’) and eyes (generally known as optic neuritis). A relapse can last from 24 hours (minimum) to weeks or even months. Often recovery from a relapse is so slow you feel like it will never end until one day you realise symptom X is feeling better.
There is no cure for MS (yet, maybe one day), nor for relapses (ditto). What can shorten the length of time for recovery (aka remission) for a relapse is high dose steroids (a 3 day intravenous or a 5 day oral course). I have generally used the cost/benefit when looking at relapses and the use of steroids. If a relapse is very painful, disabling or affects my eyesight, I’d be prepared to take steroids. If the relapse is sensory and not too bad (liveable and workable with), I would live with the relapse without steroids. The reason is that steroids are pretty nasty to take, they can make you hyperactive, unable to sleep, jittery, unable to relax, and to top it off, once you’ve finished the course, like you’ve been kicked all down the street by a horse. (And they give you a nasty metallic taste in your mouth!)
One thing about steroids you should watch out for is that you don’t have a urinary tract infection (UTI) before starting them. What the steroids do is attack your immune system (that’s causing the relapse) and can make any genuine infection or virus much worse. GPs are sometimes not really on the ball with this so they won’t suggest testing your wee before starting steroids, so you must.
A useful website regarding relapses is https://mstrust.org.uk/about-ms/ms-symptoms-and-relapses What this webpage starts with is that ‘everyone’s experience with MS is different’. That is so true. While we might share symptoms, we’re probably not going to share all our symptoms.
Equally, we won’t all become disabled by MS. Many of us will go for years without showing any signs of MS, most of the time. (I know I did!) Others will have more long lasting symptoms. Remission from a relapse can be complete or partial, as you have more relapses, more damage is being done and the more symptoms you can’t shake off.
Which leads into the next important thing, disease modifying drugs (DMDs). To avoid as many relapses and keep them as mild as possible, you can (and most people would say ‘should’) take a DMD. We are lucky today in that there are many good drugs available to help reduce the number and severity of relapses. If you’ve not started one yet, have a look at https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid
I think Copaxone is a good drug to start on. It’s a daily pill (2 actually): you could try and see if you can have a slow start. You are normally given half dose pills for the first week, then the full dose from the second week. It’s a good thing to start on one half pill per day on week one, two half doses for week two, one full and one half for week three, then the normal 2 full dose pills for week four. This keeps any side effects to a minimum. These are minimised by taking the drug with food, so with breakfast in the morning (if you like it, porridge is a good one, take the pill halfway through so it’s cushioned, or toast with peanut butter), and with dinner in the evening.
Tecfidera reduces relapses and their severity by about 50%. So it’s a better drug than many. Again, I use the risk/benefit metaphor, the risks are the side effects and the benefits being the relapse reduction rate.
There are stronger drugs, but with the potential for more side effects. Then there are weaker drugs, so less side effects but with greater relapse reduction rates. It all depends on you, your MS, your neurologists preferred options and what you personally are prepared to risk.
You should all have the assistance of an MS nurse to help you navigate your way through MS. If you’ve not been allocated a nurse yet, try phoning your neurologists secretary to ask for the contact details of your nurse.
Lastly, can I caution you all against randomly asking Dr Google for help, information and knowledge. It’s very tempting to start googling, but honestly Dr Google got his MD from a fake university. Stick to this site (use the button marked ‘About MS’ at the top of this page. Or try typing in the subject you want information on and the words MS Trust (for eg look at ‘symptoms’, or ‘fatigue’).
Obviously you can also ask us, just keep in mind that we aren’t medical professionals, we just know what we do from years of having MS (almost 24 in my case, lucky me, it was my 30th birthday present from the bad fairy godmother!) So take our advice lightly, remember that everyone’s experience of MS is different, ask your MS nurse for advice, look at reputable sources of information and keep in mind you are the boss of your own MS.
Best of luck.
Sue
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Thanks Sue for your post. I started on Avonex about 8 weeks ago and so far so good with the side affects. I was given a choice of 3 and opted for this one with the knowledge i could change if this didn’t agree with me.
I also enrolled on an Understanding MS course run by the Menzies Institute which I found really beneficial, it’s a 6 week programme and I would encourage anyone recently diagnosed to look into this course. It’s Australian based but I still got a lot out of the course and you can do it at your own pace, although they suggest 2 hrs pw.
Lesley
Thanks Sue. It feels like a lot of things are clicking into place for me with this diagnosis. I’m 43, female - looking back, I had my first attack in 2009 (my right hand went really weird for a couple of weeks but I put it down to RSI/over-use/stress), then very mild things here and there, mostly odd aches and pains. Then this summer (ie 11 years later) I had a severe headache one day and the right side of my face went numb. MRI in September, got the results yesterday and there are a few lesions. So looks like I’m quite lucky so far? Also looks like stress/burnout is a major trigger for me, which i am urgently trying to address. I run my own business so work from home, and will be doing what I can to shift the work/life balance as much as possible. I’ll be seeing the MS Consultant and nurse in the new year, and will have a contrast MRI after Christmas. My partner is being amazing, and tbh everyone else around us seems to be much more freaked out than we are. As far as I’m concerned, this is going to be something I live with for a very long time, with (hopefully infrequent) episodes of what I like to think of as ‘health bullsh1t’. I’m also incredibly glad I took steps to get healthy at the beginning of the year - lost 2 stone, got back into biking and weights, eating healthily and cut back on drinking. I feel like I’m in a good place to move forward. Fingers crossed.
Thank you so much for your reply Sue, you have answered a lot of my questions and as much as I wouldn’t wish this on my worst enemy it’s nice to hear from other people who have been living normal ish lives with ms and it doesn’t have to change everything.
Thank you granny Boudsx for your reply, it doesn’t all seem so daunting when someone who has lived with it for 23 years is telling you that you can still be you because at the moment I’m not feeling like me anymore.
Hello, I’ve just been diagnosed with RR MS today. I had numbness/pins and needles down my left side in June (sensation in left hand still absent) I had a neck MRI in August followed by a brain MRI with contrast 2 weeks ago. After going over my medical history, the neurologist suspects that I have had MS for about 11 years. I have just turned 40 and my youngest son has just turned 2. I’ve spent the past week hoping it wasn’t cancer, and initially I had a sigh of relief when they said MS this morning, but now I can’t stop crying and I am scared. I don’t know what to do first, and I don’t know what disease modifying drug to choose, if any. The neurologist gave me a few booklets and said a nurse would call, I’m so confused.
Hi, It’s horrible isn’t it. I am still trying to come to terms with my diagnoses as well, I am having good days and bad days, I am trying to think positively by thinking it isn’t a death sentence, and dmd’s have got a lot better over the years and are still getting better. Nobody knows what is round the corner or what they might have to face in life at least we have got a diagnoses and can start trying to deal with it. I hope you get some answers from your ms nurse when you speak to them. Take care.
Oh our Sue is good!
Boudsx