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Diagnosed... I think!

Hi all, it’s been a while since I last posted. Just under two years ago, August 2011, I was really ill for about 5 months, I had dizziness, sickness, couldn’t walk, couldn’t use my left arm and many more symptoms. I had an MRI and an LP which both came back positive for MS. I also had a VEP which came back negative. I was told it looks as though I have MS but that we would ‘have to play the waiting game’ (this was the neuro’s exact words), as he couldn’t diagnose until I’d had two attacks. So July this year, my left leg started to go ‘funny’, I have tingling and numbness, and then constant cramp in my right leg. This last about 3-4 weeks. I have also been having major lower back pain and pain in my hips, On and off. My left hand still tingles from when I was first ill. Anyway, that’s what’s been going on up until now. So today I had another appointment with the neuro, he told me that based on my previous result and me now having had two attacks in two years, That I should now be starting treatment as I am only young. I was a bit shocked to be honest, I knew this day would come but I didn’t think this would be it as my symptoms were no where near as bad as the first time! He has referred me to an MS Nurse who will discuss treatment options with me. He did not say which type of MS I have. From experience, does anyone know if I’ll actually get a letter confirming the diagnosis? I’m guessing that was his way of saying I’m diagnosed as if not surely I wouldn’t be starting treatment.

Hi Tiger,

I’m sorry to hear of your diagnosis, but rest assured you’re not alone - many of us have trodden the same path.

If you’ve had distinct epidodes, and also you’re being put forward for treatment, I would say there’s barely any doubt you have RRMS. There are few/no treatments for progressive types of MS, and they don’t take the form of distinct episodes, from which you recover, so I have little hesitation in saying it must be RRMS.

Yes, you should certainly get a letter confirming the diagnosis. It may take the form of a copy of a letter that is not actually to you, but to your GP, telling them the outcome. That’s what I received.

Since you are young, this may not apply, as many people only take out insurance as they get a bit older, but do double-check whether you have any critical illness insurance. MS is typically a covered condition, but the time limits for claiming can be quite tight (mine was just three months from diagnosis). So if there’s any chance at all you might have a policy, don’t delay digging out the paperwork, and checking exactly what it says.

If you are a driver, you also need to inform the DVLA, and (though this advice often seems to prove controversial, for some reason), your motor insurer. They CANNOT use your diagnosis to push up the premiums, so don’t worry about that. You just need to make sure you’ve fulfilled your obligations by keeping them informed. They may say they don’t care - which is absolutely fine. But you can’t be in the wrong if you have told them. Worst case is if you didn’t tell them, and got into an accident. They might claim it invalidated your insurance, because you hadn’t disclosed ALL material facts.

Hope this helps,

Tina

x

Hi Tina, Thank you so much for your post. I find it very helpful! I saw the MS nurse yesterday and he gave me a bit orange folder full of information. He also mentioned it was RRMS as you also said :slight_smile: I have now notified DVLA. I do have life insurance however they only pay out if you have had symptoms for 6 months according to the policy. My first attack was 6 months but then my second was a couple of weeks. Will give my car insurance company a call today. There is just so much information to take it, I don’t think it’s sunk in yet to be honest, as I wasn’t expecting a diagnosis so soon! But then in a way I’m relieved to have a diagnosis as unfortunately some people have to wait years :frowning: P.s I did get the letter too but it was all in doctor talk! Kelly x

Hi Tina, Thank you so much for your post. I find it very helpful! I saw the MS nurse yesterday and he gave me a bit orange folder full of information. He also mentioned it was RRMS as you also said :slight_smile: I have now notified DVLA. I do have life insurance however they only pay out if you have had symptoms for 6 months according to the policy. My first attack was 6 months but then my second was a couple of weeks. Will give my car insurance company a call today. There is just so much information to take it, I don’t think it’s sunk in yet to be honest, as I wasn’t expecting a diagnosis so soon! But then in a way I’m relieved to have a diagnosis as unfortunately some people have to wait years :frowning: P.s I did get the letter too but it was all in doctor talk! Kelly x

Hi Kelly,

If you still have tingling in your hand from the first attack, you qualify on the 6 month time line as it has been on going for more than 6 months.

It doesnt matter if it wasn’t called ms at that time as it now turns out that the cause of the original attack was indeed ms.

I claimed as soon as I was diagnosed as I still had issues from my original attack 2 years prior and they eventually paid out and refunded all the premiums we had paid whilst the claim was ongoing.

Good luck

Shuffler

Hi Shuffler, Thank you for your post - That’s great to know! Just out of interest, how long did the whole claim process take? Did you do it by telephone or wrote to them? Kelly

I phoned them for the forms which they sent by post.

It took about 4 months, but that was because they queried some thing on the original policy application.

I was given the choice of a lump sum or monthly payments.

Good luck with the process.

Thanks Shuffler! I called them Monday and they took details over the phone. Received the claim forms yesterday. Fingers crossed the claim goes through! X