This has all come about in the last 4 weeks after waking with a heavy arm, this progressed to a restless leg in the evening. The next morning I realized my left hand and arm were not working properly and that the left side of my face had dropped. I Went to a and e who said I hadn’t had a stroke and sent me home. I went to the doctor’s the next day who sent me straight back in and I was told I needed an MRI. This happened on the Tuesday and the doctor looked at the results straight away and advised he would need to speak to a neurologist as there was an area of inflammation which was causing my symptoms. They requested a lumber puncture which I had on the Thursday. Over the next 10 days whilst waiting for the results my symptoms got slowly better but I was so tired I couldn’t talk at times and found it hard to do anything. I was then contacted and told my lp results hadn’t been sent off and that they wanted me to have it re done. At this point I was so distressed. I had also had a lot of pain and headache s from the lp and had done some research into ms and felt that I wanted to speak to a neurologist before I had another. I was told this would take months on the NHS so decided to pay and see the same consultant privately. On Monday he advised that I didn’t need another lp and that from my MRI and the parts of the lp that were sent off that I had ms.I have multiple longstanding lesions and a new lesion that is causing my present problems. He has arranged for a ms nurse to contact and wants me to start betaferon straight away. I am so scared for the future and although my arm and leg are much better the fatigue is overwhelming. I went out for the first time to pick my daughter up from school but was in bed at 5.30 and most of today. I find that if I have a good day where I can make a cup of tea and do my daughters hair I pay for it the next day even if I lie on the sofa for the rest of the day and I don’t know if I should push myself when I do feel a bit better. My husband and children have been amazing but I worry about everything and find it hard to stay positive and panic with every tingle and pain especially in the middle of the night when I wake to check things are still working. I would love some advise on how to get through this and how to help myself i.e diet, vitamins and also about how to handle the betaferon as if it makes me any more tired I don’t think I’d get out of bed at this point. I know the outcome of my MRI could have been worse and that there are lots of people worse off than me but in the early hours its hard not to panic. Apologize for the long post but this forum has kept me sane over the last few weeks and I really value everyone’s experiences and opinions. Thanks Zoe age 38
Hi Zoe I can’t offer a lot as I am very recently diagnosed too. But what I have found is that vitamins d, b12, zinc and omega 3 help a lot as does Indian tonic water with quinine for the muscle spasms. I have a glass before bed and take another to bed to drink if I awaken. I know the panic and my gp has recommended a course of CBT, which after researching its affects, I am going to take up as it seems to have really positive affects on the majority of patients.
My first piece of advice is to tell you to try and let go of the panic and fear. Relapses are scary things whilst we’re in the middle of them because they feel like they will never end, but they do - slowly and with good and bad days, but they do. How long this might take is impossible to say because all relapses are different and all people are different, so try and hang in there. Hopefully you’ll start to notice small improvements soon.
The second thing I wanted to say is that your consultant should really have advised you that there are actually five DMDs (disease modifying drugs) that you can choose from - he’s not supposed to tell you which one to go on. You can find out all about them if you have a look on msdecisions.org. We all respond differently to DMDs, some of us doing brilliantly and some of us finding they don’t help at all and everyone else somewhere in between. They do have some side effects, but versus the damage that a bad relapse can do, it seems a bit of a no brainer to take them, to me at least.
Should you push yourself when you’re feeling a bit better? No. Rest as much as you can, avoid stress, prioritise your tasks and drop everything that’s not essential (e.g. eating is important, dust is for drawing in!), accept and ask for help and generally be really kind to yourself. It’s not being lazy, it’s conserving precious resources that your body needs to fight back.
As far as vitamins etc goes, do try and eat a healthy diet, but most of us take vitamin D3 supplements too (the norm is 5,000iu a day - the ones I get are quite cheap on amazon at the moment: Healthy Origins). I also take 100mcg of vitamin B12 a day too - unlike D3, there’s no evidence that it can help MS, but it’s good for cell repair and we certainly need more than our fair share of that!
One final thing: if you are being kept awake with various pains and sensory symptoms, you could ask your GP for something to help with these. A low dose of amitriptyline might make the world of difference for example.
Hi Zoe You have had great advice from everyone. I just wanted to welcome you to the site and lend my support. You must wonder whether you are on foot or horseback atm. Everything has happened so quickly. A dx of MS seems like a terrible thing at first but it really is not the end of the world. You have probably had this for a while without realising it and you are still the same person as you were before the dx. You are still you. You will come to terms with this, although it may take a while. Take things a little bit at a time and be kind to yourself. Lean on your loved ones and know that we will listen to you whenever you need to vent. Rant and rave if you need to, we don’t mind. Thinking of you, Teresa xx
Hi Zoe - you’ve had some great replies already. I would just like to add that I take magnesium - after advice from this great site - it’s been amazing and sorted out my leg stiffness I used to get every evening. Supportive hugs Min xx
I cant really offer much more advice than that you have already received. But just to tell I received a really quick diagnosis in march I went to casualty on the tuesday and was diagnosed on the friday. I am also 38 and a mother of 3 children. At the beginning I also slept most of the day and was in bed by 8.30 each night but this has improved and hopefully it will for you also. Just take your time try not to panic and rest when you need to. I know feelings can overwhelm you, I sometimes begin to panic about the future and think about random things like when the children will need life insurance and how my diagnosis will affect them. I have learned to try and rationalise everything but it takes time.
I have been on avonex since may and whilst fatigue is still my main problem things have definitely improved just give it time. I also have increased my intake of oily fish I dont know if its doing anything but it cant do any harm. I also have reflexology every month and this has been a godsend I just really enjoy it and it gives me a couple of hours away from the madness that is home.
I have also returned to work and I do 22hrs and I enjoy it. The most important bit of advice I received was from my diagnosising consultant who told me “just be good to yourself” I have taken him at his word and tried to do this.
Hi Zoe, I just want to add my welcome to the forum - although of course you’d rather not have to be here at all! Everyone on here is friendly and helpful - some diagnosed, some not (including me) but we’re all suffering similar symptoms and there’s always someone ready with advice, comfort and also fun!
With such a quick plunge into the ms world you must be reeling with shock and feeling this is all too surreal. You will find a way to live with this, even if it takes a while. Aim to think about the things that are good in your life and the things that you can do whilst pushing aside the difficulties and weirdnesses in order to stay on top and find a positive path for you and your family. Rest when you need to and before you need to! Stay off the internet searches, tempting as it might be. Stick with this forum and also the MSTrust website. It can become all-consuming otherwise which will make you feel worse. Carry on doing all the things you enjoy doing with your children, husband and friends. Kick ms in the ass!
