LP Results.

New diagnosis and before diagnosis
1

Hi everyone,

I’m unsure why I’m posting really. But I’m feeling a little down today. I got a letter from the DVLA today about giving them back my license and renewing for a 3 year medical review one. It was what I expected in all honesty but it’s hard to explain to the people around me that it still hurt.

But on top of that I called my Consultants Secretary as they advised me to, to get my Lumbar Puncture results today. I called them up and all they said was that a letter had been sent out to me. And I basically have no idea what this letter will contain. (i mean of course the results) but I don’t know specifically what it will say.

I mean I’m basically expecting it to say what we all expect but I guess I’m just not feeling prepared. Even though I should be. Feeling a little alone in it all. And yes, I don’t even know.

2

Hi I won’t get my LP results until April, when I see my neurologist, plus I am still waiting for my second MRI appointment so I know what it feels like, as for driving I have not done anything because I am waiting until April to sort it out. Hope you get some good news.

Kay

3

so what happened hun?

4

I really wouldn’t worry about the 3 year medical licence, that’s all I’ve ever had since I started driving (due to epilepsy). It just means you’ll have to fill out a questionnaire every 3 years (which they’ll send out to you in the post before the licence is due to expire) and they’ll send you the new one :slight_smile:

5

Hi Kay,

I see my neurologist again at the end of March, so it’s very much a waiting game for me too. I think the waiting, and basically being in limbo is one of the worst times.

I mean in all honesty, my neurologist hasn’t asked for a second MRI, but mine was light up like a christmas tree which as he said shouldn’t be at my age and for a none smoker. So I’m pretty certain it will be a complete definitive answer of MS. I mean I’m expecting it, but I guess I’m not as prepared as I thought.

I can’t fault you, I only contacted the DVLA as my neurologist advised it. I mean I was expecting to have to have a medical license but it still kinda hurt you know?

I hope everything goes well for you! I’m always around if you need to chat.

Di

6

Nothing really, I just wondered what this letter about my LP results might contain?

But i also had a very down day the other day, was in pain, exhausted and I let everything get on top of me. I guess I’m not coming to terms with this as well as I thought.

7

Thanks for the reassurance, I think it just kind of “surprised” me in how I’d feel about it. I knew it was coming, but it still hurt. I think it was mainly because I went from having a license with no restrictions to this. Was I guess the shock of the unknown, plus a bad day, and overthinking all getting on top of me.

I don’t think I’m handling this as well as I thought I might or others expect.

8

You said you were getting your LP results i just wondered if they came. x

9

Hey have literally appeared today.

Test is positive so I definitely have MS. Not surprising but still doesn’t hurt any less if I’m honest.

10

Hey Diggo

So, welcome to the club. Officially that is. You can now legitimately wear the T-shirt that says ‘I’m not drunk, I have MS!’ (Even if you are drunk!)

The emotions you will have been experiencing over the last weeks will probably continue to seesaw for a good while. Let them. Don’t try to ‘see the positive’, ‘come to terms’, or ‘accept’ the bugger. MS is crap and it’s a damn shame you’ve picked the unlucky straw. Give yourself time to feel sorry for yourself, get angry, swear (a lot if you’re anything like me!), feel bereft, shout ‘why me?’ Generally live with the feelings.

Then the time will come when you start to read everything you can about MS. To learn how to fight the beast. Try to stick to reputable sources, such as this site, the MS Trust and NHS. Some people swear by dietary methods of beating it, there’s a bunch of books that advocate one diet or another, if you feel like giving one a go, there’s many people on this site who swear by one diet or another (I’m not one of them, but that’s because I like food and restricting my diet any more than I absolutely have to seems unnecessary and cruel - to me!)

Try to get some exercise. The stronger you are in your body, especially your ‘core’, the better you’ll be able to bounce back from relapses. You could ask for a referral to physiotherapy for an exercise plan.

Do look at the disease modifying drugs I mentioned and gave you the link for in my last post to you. I’m pretty sure you’ll be talking about them when you see the neurologist in March, so a bit of familiarity will help.

And if you don’t receive details about an MS nurse soon, phone the neurologists secretary and ask about a nurse.

Best of luck. Try to enjoy the weekend, give yourself some extra chocolate (if you like chocolate), and/or nice food and wine (if you’re more of a food person). Don’t drown your sorrows too heartily, it won’t help and will probably make you cry.

Of course, keep coming back here, I’m sorry to say it but you’re one of the MS family now. So if you want to talk, have questions or thoughts, feel free to air them on this forum board, or on Everyday Living.

Sue

11

Hi Sue,

Thank you. You are the first person that seems to understand that I don’t have full control of my emotions, and can relate to feeling angry etc etc. I know I was expecting this but having to read it still hurt like hell. I am now classed as disabled. The reality is I have no idea how to handle that and because it’s all invisible the people around me don’t understand, hell they all know about the MS but it’s like cause it’s not seen they forget or don’t bother.

To be honest I did all that when it was first mentioned, I went to the MS trust, here and NHS as you said. I also have had several people tell me they all know someone with it of various tales but it’s hard to explain to people that it’s an individual condition that’s different for all. Also I very much am like you, you only live once and so I’m [removed by moderator] well definitely going to eat what I enjoy! I mean can’t be any worse than having MS.

I have quite a physical job in all honesty, so I’m tired all the time lately since returning to work. So I’m definitely exercising.

The letter I got today with my LP results also states the drug he wants me to try. It’s called Tecfidera, and I don’t have specific details (as in date etc), but the letter was also sent to an MS Nurse named Kate, and my neurologist has said for her to talk to me about MS and about the DMD, and if it is decided I want to start that then to start it (unsure how etc but that’s all logistics).

Thank you so very much Sue, I probably will get some chocolate, and I agree as much as I may want to drink my sorrows away I know that’s not the best option. At least I’ll be busy with family and work this weekend, but thank you very much.

Di