Last reply 7 months ago
More waitingggggg

Hi everyone I was diagnosed by a neurologist after having a Mri as having Ms In October 2018 and after a 3 month wait today was the day I had been finally waiting for and was meeting my Ms specialist neurologist for the first time which I assumed I would be told what type of MS I have and a look at medications, then he did all the normal physical tests and looked in eyes, and showed me my scan and said I have a few small lesions on brain and one in neck and even though he thinks it’s MS he wants to be totally sure and wants to repeat my Mri and now do a lumber puncture, I couldn’t believe it everything is such a long wait, he feels some of my symptoms are Ms and some are not, I told him my eyes have been blurred on and off last couple months, and all the other symptoms I have had, every time Ive had a eye flare up and had a appointment with opticians thy dnt see inflammation he said that’s strange, He said he wants to do all these tests to be sure, and he does not have a next free appoitment until July, he said he’ll write to me my results of blood tests and lumber puncture and Mri but he can’t physically see me till in 6 months time as he’s so booked up to discuss ms and if I need drugs or if it’s a wait and see approach I couldn’t believe it ,I have a ms nurse which I’ll see in April,I’ve really called around a lot of people in London about if these waiting times are normal and about possibly changing neuros, but IVe been assured by quite a few people my neurologist is very well known and very good at what he does, I was a lil bit surprised when he said we will see if you need treatment or if it’s more of a wait and see approach, I just had to say to him well do u have a idea what stage it would be if its definitely ms, he said prob relapsing,what are you thoughts everyone? I’m just scared that the ms will get worst and all these delays are not good, I’ve been told to stop stressing as I am really bad at that and I have put on a lot of weight last year which I need to get off and wondering if that is contributing to my symptoms?

I’m Frustrated did but going to try and calm down think I have no choice.

Thank you X X

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stumbler
7 months ago

@melmel1 , it is a frustrating situation, but you’re not the first one to go through it.

In order to formally give you a diagnosis, our medical professionals have to be absolutely certain. A diagnosis, once given, can’t be un-given.

So, yes, do try and calm down. That would be the best treatment for you at this time. 😉


melmel1
7 months ago

@stumbler Thank you, I need to stay calm and have a cup of tea lol X


grandma
7 months ago

Your only choice is to pay. Can you afford to pay for a private consultation?


melmel1
7 months ago

@grandma not really I could say if I pushed to get it but I asked one place he was like 300 pound for consultations 150 pound a time for blood tests 950 for a mri I was like woahhhh, and I was told I’d only be referred back to the NHS anyway if treatment was needed I don’t know how true that is. X


vixen
7 months ago

@melmel1, this is a sorry state of affairs. Yes, the LP should yield a definitive diagnosis if it is MS. Why any specialist thinks it appropriate to diagnose people by post is quite beyond me. This has come up a few times on here and is very upsetting. OK, so he is a doctor of high repute but, if your LP and MRI gets done, can’t you be referred to someone else? My sister is transferring from her hospital across to mine, both in London, and that hasn’t taken 6 months for an appointment. The sad fact of life, is that you are going to have to fight and pester to get seen. That’s what makes us MS Warriors. So, great that you’re having a LP and MRI. If it is MS, there’s nothing you can do to alter what is going on. BUT, it is a fact that stress is bad for us and could make sysmptoms worse, so you are going to have to try and keep calm. You’ve come so far, stay strong, look after yourself x


edmontonalberta
7 months ago

@melmel1

I know this is not what you want to hear – from what you wrote it appears you do NOT have MS. Yet you have started almost a dozen threads on this site in less than a month!

May I suggest you keep a diary of how your physical ailments are affecting you on a daily basis. Read through other treads on this website – educate yourself on potential treatments; then wait for the doctors to give results of the tests.

If you have MS, they will tell you which type it is. Once you know that, we can assist in the different options for treatment. Until then, research & a diary would be a more valuable use of your time…


melmel1
7 months ago

@vixen thank you for the supportI will look into it and try and stay calm xx


melmel1
7 months ago

@edmontonalberta I know what your saying and I prob have gone overboard with the threads but only out of fear and I was told I definitely had MS so all this re doing the Mri and having to do a lumber puncture was a total shock as I was told I had Ms. Anyway a waiting game now.


grandma
7 months ago

I know it’s no consolation, but you seem to be in what we call ‘limboland’ a horrible place to be. As you’ve already had an MRI, and any neuro can look at it, I don’t see the problem with being transferred to another neuro who has got a shorter ‘list’ but I agree with @ Vixen the more you make a pain of yourself,telephone calls, e-mails, letters, get your local mp involved, anyone you can think of to bolster your case. Good luck👹🥊


melmel1
7 months ago

@grandma thank you I will try and keep pushing X


jolea
7 months ago

Hi.
Calm down you will be ok.
Just relax it is so difficult. They need to be certain about MS and it can take a long time.
Good luck and chill.
Stress and MS do not mix well.


melmel1
7 months ago

@jolea today I’m calmer lol how are things with u? X

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