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Possibly MS

Hi all… I’m new to the Site but have been a member for about a week reading all your stories which have helped me so much so thank you all for posting :slight_smile:

For me it started about a month and a half a go… I got pins and needles all on my right side - head to toe… had this for about a week and then woke up with double vison, stupidly went to work who sent me straight to A&E…

they said it was a mini stroke! And then that got the ball rolling with all tests! CT,MRI,Ultrasound… then I got the MRI results back which showed multiple lesions and then asked for a lumbar puncture. Doctor said that MRI showed demyelination which was possibly MS.

at the lumbar puncture the doctor said again that it was highly MS

i have my neurology appointment on Saturday…

my question is, do you all think with the small symptoms that I have that it’s MS? Is demyelination a sign of MS? And is it possible that I’m kind of in early symptoms of MS? (The relapse one?)

sorry for all the questions and I fully understand that you might not be able to answer but I’m just really panicking now x

hi siboo

it does sound like you have ms and if you have a past history of these symptoms you might (but not definitely get a diagnosis of ms). read up on the macdonald protocol).

you will have to wait until saturday when you see your neuro.

the type of ms is something they will test for.

i was given a high dose of IV steroids and it improved my walking so much that my neuro decided it was RRMS,

rest well before your appointment.

take someone with you to help you remember what questions you need to ask and to remember what the neuro said.

carole x

Hi Carole

​Thank you so much for replying…

i don’t have past history at all, never reported anything to the hospital before and never had any of the Tests that I have had recently ever.

im just hoping that on Saturday I will get a definite diagnosis as there is nothing worse than not actually knowing!

Lyns x

Hi Carole

​Thank you so much for replying…

i don’t have past history at all, never reported anything to the hospital before and never had any of the Tests that I have had recently ever.

im just hoping that on Saturday I will get a definite diagnosis as there is nothing worse than not actually knowing!

also my numbness is getting a lot better each day

Lyns x

Hi carole

thank you so much for replying…

i have no past history, and I have never had to have the tests that I had previously so nothing to go by on history?

will have someone with me on Saturday and will make sure I rest up

my numbness on the right side seems to be getting better by the day though, and no longer have double vison

all I have is numbness

lyns x

Hello

It does sound as though when you have the appointment it’s likely that you’ll get a diagnosis of MS partly because the MRI showed multiple lesions and demyelination. And then you’ve said that the Lumbar Puncture made the doctor say that MS was likely.

95% of people with MS have oligoclonal bands on their cerebrospinal fluid. This is what the doctors were looking for on the LP. And it sounds like what they found.

It seems that this has happened so fast it’s heartbreaking. So often on this forum, we are commiserating with people that they are stuck in limbo land for months if not years. And with you, it seems that the reverse could be true.

Obviously, what we deduce from what you’ve said is not a definitive answer. You will be getting that on Saturday from the professionals.

Something like 85% of people with MS have the relapsing remitting variety. Which is good news because there are now a whole load of disease modifying drugs available to reduce the number and severity of relapses. So more than likely, assuming you are diagnosed with MS at the weekend, you will be given some information about DMDs and given the contact details of an MS nurse who will be invaluable in helping to sort through the emotional issues and the choices you will now have to make.

Best of luck for Saturday. Let us know what happens.

Sue

I think many of us start with something that is relatively minor, just deeply weird and obviously not at all right. And scan evidence then sometimes shows that there was more going on in there than we knew about, it just did not all cause obvious symptoms. So yes, I’m afraid that that is something that happens.

I hope that you get some answers soon and am sorry that you are having such a worrying time.

Alison

Hi all

had my visit yesterday with the doctor and I do have MS. I have RRMS

i have several lesions and 1 big one which qualifies me to have DMT. I also have one I think near my spine?? Which is causing my 1 symptom of numbness (which is easing)

he has referred me to another MS doctor who can prescribe them so just waiting now for that appointment

the doctor said that I can carry on as normal, will suffer from fatigue but will be assigned a MS nurse when I get my

medication.

so that’s me now! I think I’m ok with it all? I say think as some days I’m ok and then some days I get really sad :frowning: which I presume is totally normal for us all?

Hello Lyns

As we said before, the appointment yesterday was more or less confirming what the doctor had as good as diagnosed already.

Its really good that you’re feeling OK with it. But do expect your emotions to bounce around a bit. That’s only to be expected as an MS diagnosis isn’t something easy to get your head round.

The really good thing of course is that you haven’t had a long period in limbo. So the shock of it is to some extent tempered by that.

Also of course, there’s the fact that there are so many disease modifying drugs (DMDs) that you’ll hopefully get started on something that works well for you and you’ll be healthy for years to come. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid This will at least give you an overview of what could be available to you. Exactly what’ll be offered will depend on the prescribing centre, on your disease activity and your own preference.

Keep in touch while you get your head round it. There are lots of people who will be around to try to answer your questions or just to empathise with you if you feel the need to rant and moan about things.

Sue

Hi all

hope you are all doing ok… just after a little bit of advice. Just had a letter through to say I have to go and have EP’s carries out? Visual and somatosensory potentials!

should I be worried? I’ve already been diagnosed and am just awaiting my appointment to talk to a specialist to go through what medication is best for me, and now this test! It hasn’t been mentioned before

thanks in advance for any info / advice

lyns

Hi, maybe the EP tests were in the pipeline before your got your diagnosis. I would contact my GP and check if you need to do these tests.

Best wishes,

Marjie xx

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