Well I saw my neurologist yesterday finally, I had a lumbar puncture and full body MRI on 28th March and have not been right since. I couldn’t get to see my neurologist at all even though I was told to ring if I had any symptoms, first of all I had the ‘headache from hell’ for 8 days with dizziness and weakness in my left leg which i still have but its getting better I think. And to top it all off my doctor has now now find I have very high blood pressure when it always used to be normal, so now I am taking medication for that and I have been signed off work since the lumbar puncture and i’ve only been there three months . Anyway, I had my appointment yesterday with the Neurologist and I have been diagnosed with MS now and I am going to have to go on a course of steroids for 5 days for my weak leg and I will get an appointment for the ms nurse now, which means I will be able to get help right away if I have any more symptoms which is good. But I am to start treatment now, I can’t remember what she said it was called but I have to inject myself at home and it will give me flu like symtoms (don’t like the sound of that) but she says it will help slow down the progression of the disease. I have Relapsing Remitting type and she says I have it mildly, so hopefully I won’t get another relapse for a while but who knows? I would just like to know if anyone else knows what the drugs are I might be injecting and how bad are the flu symptoms and are they permanent and do the injections work in your oppinion?
So sorry about your diagnosis but at least you know what you are fighting now - and it looks like you are getting the support you need xx
I don’t know anything about DMD’s I’m afraid as I’m not diagnosed with anything but I’m sure you’ll soon get plenty of first hand advice from the others xxxxxxjenxxxxx
hi Claire. Sorry to hear about your diagnosis. I got mine 2 weeks ago. I know it’s all very daunting but you’ve come to the right place. The people on here are fantastic. First things first read the information on here em just diagnosed (there’s a link on the home page) it explains all about DMDs etc. Don’t Google too much as you will find lots of scary things I’d stick with the info on here. There is life with MS xxx
Receiving a diagnosis was a double edged sword for me and so I never know whether to say congratulations or commiserations to others…I think it’s probably a bit of both.
The injections that your neuro mentioned are dmd’s (disease modifying drugs). They’re not a cure and not designed to make you ‘feel better’ but are designed to help reduce the amount and severity of relapses and maybe to slow down the progression.
The ms decisions website is a good place to look for information on the various dmd’s available and will give you more of an idea of what to expect. I first started on betaferon and one of the side effects of that for me was ‘flu like’ symptoms. The betaferon nurse who taught me how to self inject advised me to take a couple of paracetamol about half hour before hand and suggested injecting just before going to bed - which does help.
A lot of people do find that their relapses are reduced over time when on dmd’s but like any drug it’s not necessarily the same for everyone. It really is up to you whether you try them and if you do then make sure that you’re clued up on it first.
What I would suggest is that you take your time adjusting to the news 'cos it’s a lot to get our head round. Stick to official sites like this one and the ms trust and steer clear of googling if you can as there’s lots of stuff about ms on the internet that is utter rubbish.
This site and the ms trust have various publications available to download, read online or order by post, which are worth looking at when you’re ready.
I found everything a bit daunting when I was first diagnosed and felt swamped with all the information and the speed in which things were moving, but once I got my head round things it became a lot easier and it will for you too. Just take one step at a time at your own speed. Maybe make a list of questions ready for when you see your nurse.
Apologies for the long post but I hope that some of it helps you!
Hi Claire Just wanted to lend my support to you. Debbie and Poll have given you sound advice which is well worth taking note of. Sorry for your news. You will probably be feeling shell-shocked at the moment and will need plenty of time to adjust to what you have just found out. Take it day-by-day and don’t think you could have done anything to prevent it. Just remember we are always here if you want to rant and rave or just offload your sadness. You will probably go through a period of grieving, for the lost you. This is normal - look up the 5 stages of grief on google! Thinking of you, Teresa xx
Hello from me too.I saw my ms nurse for the first time yesterday and have gone for copaxone as I would rather inject daily than run the risk of flu like symptoms.
The advise of going on the ms decisions site is spot on as it takes you through the options and allows you to work out what will suit your life best.
I’ve been on Copaxone for the last 4 or 5 months. It’s surprising just how quickly it becomes normal injecting on a daily basis. I do it in the morning and it’s fine.
The delivery of the drugs is easy peasy too - they just ring you every couple of weeks, ask a few security questions and arrange a day to deliver the next box! I have mine delivered at my work - who are absolutely fine about it.
Please do check the msdecisions website - it’s a great source of info about DMDs (disease modifying drugs). You do not have to take what the neuro and/or nurse have told you - according to the rules, you get to choose between the injectable DMDs. http://www.msdecisions.org.uk/
The interferons do cause flu-like symptoms in some people, but these wear off after a while for most people. I was on Copaxone first because I didn’t fancy the “flu”, but then had to switch to Rebif when Copaxone stopped working for me. Tbh, the first 4-5 months of Rebif were not a lot of fun, partially because I can’t take ibuprofen (which is supposed to be really good for the “flu”), but I haven’t had ANY relapses since starting in June 2011 so I’m really happy overall.
The injections are a doddle and you’ll soon get used to them, no matter what you choose. Managing the “flu” if you go for an interferon is a bit of a personal thing. I can’t inject Rebif at night because I can’t sleep when I do, so I inject in the morning (this also means that if I forget there’s plenty of time to remember!). I take 2 paracetamol with the injection and then 2 every four hours after that (to a max of 8 a day).
Whatever you choose, I hope it works really well for you.
Thanks so much to each and every one of you, I felt like i wanted to have a little cry at your kindness, bit over emotional at the moment . I will take time to have a look at the website you’ve suggested and try not to google to much. Unfortunately that’s all I have been doing lately, although I found some lovely ladies on youtube describing ms and I could relate to it somewhat as mine started with optical neuritis last August. I did feel like my life was over for a short while and I wouldn’t be able to do the things I love anymore, like my zumba. I haven’t been for 6 weeks cause of not being well enough but I will go back soon. And I’m actually normally very positive and I will contiue to try and be that way. Thanks for the advice on the DMD’s, I think I will probably try the Copaxone if it doesn’t give you the flu symptoms, don’t want to think about any headaches after the lumbar puncture.
Thanks again for all your advice and support, I’m so glad I have found some new freinds.
I think there are a lot of scare stories about post LP headaches. I was really lucky I found the whole process a breeze! Just a sharp scratch for the local anaesthetic, then pressure with the LP needle. I lay flat for an hour and then went home. All was fine so try not to worry. Teresa xx
Hi Claire, welcome and so sorry to hear about your diagnosis. We are all different when I was dx I had to know everything and googled anything to do with ms. You must do what’s best for you, I am on dmd’s I choose Avonex as you only have to inject once a week. I had flu like symptoms for the the first 3or 4 months but I am fine now. Keep positive and take care Karen x