Well, the consultant said that with the positive lumbar puncture there was no doubt in his mind that I have multiple sclerosis. So now I have to contact the MS nurse to discuss possible medication although he recommends that I see how I go without for now. But I think I would at least like to have the information to hand. Then I’ll see him again in six months time.
So, at the moment, I’m glad I know what’s wrong but having a consultant tell you that you have MS kind of makes it all too real. So I’m not too sure how I feel really.
Hi, just say I’m thinking of you. It’s horrible isn’t it. I was told last week that the tests will confirm MS (haven’t had them yet). Still, the future starts here, let’s make it a good one. Many best wishes to you xx
It will take time to sink in, but at least you have answers now for your symptoms.
We each have lots of other questions to ask, so why not join the everyday living forum where you can ask away as there are lots of msers who have experienced lots of varied symptoms, some unexpected, some text book, but who can offer their guidance. I know I wouldnt be without the support of my now very good friends.
Welcome to the club of extra special people on these boards who can give you luv, support & care and share your journey.
Congratulation and commiserations Lynne. I know that may sound a bit harsh but your out of limbo now and in my experience that is the worst place to be. Take yourself out and have a good night. It takes time to sink in, even when the dx is expected. I have found the support here invaluable. Best of luck, Chis x
Hi Lynne I thought that you might get this dx today. I’ve been thinking of you and wondering how you got on. You have mixed feelings don’t you - relief that you know what you’re dealing with at last, sadness that you do actually have this horrible condition. Give yourself time to get used to this dx. Just live day-to-day and don’t think too much about it, just get on with your life as it’s still the same life which will just have to accommodate some new elements into it. I understand how you feel, I was only dx in Dec but chin up girl, you’ll be fine! Take care, Teresa xx
Just to echo what others have said. It is horrible knowing you have got MS but at the same time at least you know what it is that has been causing you symptons. Hope you keep well. After my diagnosis back in 1997 I had 6 years before my first relapse and have only had 2 major ones since. There are more treatment options now too and hopefully when you get to meet an MS nurse they will be able to discuss this with you.
From what I remember of your symptoms (although my memory is rubbish!!!) and those 30+ lesions, I would vote for getting onto a DMD (disease modifying drug) sooner rather than later. They aren’t a cure, but they should help to reduce the number of relapses you have and reduce the severity of those you still have. They can also help to slow the onset of disability.
The best place to read up on the options is the msdecisions website. I’m guessing from what the neuro said that you will be limited to the injectables (Avonex, Betaferon/Extavia, Rebif and Copaxone): the “first-line” DMDs. (If someone’s MS is particularly aggressive or they continue to relapse while on an injectable, they become eligible for Tysabri or Fingolimod (Gilenya).)
Even though you were expecting the diagnosis, it may well hit you like a ton of bricks at some point. Try and hang on to the fact that we DO get through it. There IS life after diagnosis - and it can still be GOOD!
No words of wisdom as I am still a newbie in limbo but just wanted to say I am sorry about your DX and I hope you can get through it with lots of support, practical help and also understanding.
Thanks everyone. At the moment I’m not sure whether to laugh or cry. I’m sure as time goes by it’ll get easier to deal with. It’s all just a bit new at the moment. The consultant, obviously didn’t have a great deal of time to go into all the medications in depth but he did say his MS nurse is brilliant and could spend loads of time with me explaining them all. If it means I can avoid things getting worse for a longer period of time then medication is worth considering. He did explain about NICE guidelines for DMD’s, which I was aware of.
So next week I’ll phone the nurse and take it from there.
Lynne
PS, I’ve got a trip to Disneyland Paris in September to look forward too
And, in-between the “Oh ****” and the “thank heaven I have a Dx” feelings …
Remember that if you drive, you must tell the DVLA, and if you own a car, you must tell your Insurance Company. One little bump and the consequences could be inconvenient (to say the least).
Now plan on doing all the things you want to while you can (like I know that there are three parts of France that I will not get to see - but I am still planning one trip to Normandy this year).
Am pleased you now know what you are dealing with. Just wanted to wish you all the best. We went to Disneyland Paris in February so if you want any advice just shout. 12 of us went including a disabled adult and 3 disabled kids. Do you get dla? Take care Xx
Thanks everyone for the kind messages. Today, the reality of it is sinking in a bit more. I’ll contact the DVLA next week and my car insurance company.
I’m really looking forward to Disneyland Paris, we have been for about 15 years. I don’t think I would qualify for DLA yet. I’m ok to walk for a reasonable distance but I do get very tired quickly. So I think I’ll leave that for now.
I’m sorry I hope you didn’t think I was belittling your diagnosis or sounded mercenary when I mentioned dla. It’s just because if you did you can get passes at Disney and it makes life easier. Sorry if I offended anyone.
No offence taken what so ever! Athough I think you can get a wheelchair at Disneyland Paris if you need one. So if I get really tired I’m sure my husband will be pleased to push me round! He’s probably load me up like a pack donkey!
Thanks hun, I have a habit of speaking (and typing) before I think!
They do have wheelchairs but check in advance, when we were there you had to prebook. My almost 3 year old niece came with us and we made her walk most of the time so we could use her buggy for all the bags lol.
can i ask you how you got on with the lumbar punch, as i have to go for one this thurs and very anxious about it, did you have to wait long for results.
thanx joanne {i am a newbie going through diagnostic test}
can i ask you how you got on with the lumbar punch, as i have to go for one this thurs and very anxious about it, did you have to wait long for results.
thanx joanne {i am a newbie going through diagnostic test}
