diagnosis date given

New diagnosis and before diagnosis
1

finally get my diagnosis tomorrow afternoon … mixed feelings

I should have had them before xmas but have been given a bit of a run-around since before xmas…phone this day, phone that day, letter for appointment in post, no letter - no appointment, ring this day, ring that day, ad infinitum.

Now I finally get to find out what is wrong with me … scared but pleased that after 5/6 years of being told there is nothing wrong with me I will know what I am dealing with

2

hi

im really glad you are going to get it sorted at last!

its awful not knowing whats wrong and people not believing you.

it may still take a while to sink in though but at least you will have proved a lot of people wrong and thats going to help other people in the long run.

so thanks from me xx

best wishes

mandy xxx

3

Good luck!

Let us know what happens.

Karen x

4

Good luck for tomorrow hope all goes well x

Deb

5

Good Luck tomorrow - let us know how you get on, Teresa xx

6

Good Luck, hope they have answers for you.

7

good luck :slight_smile:

8

Ditto to all the above, but do let us know how you get on. Good luck.

Janet x

9

thank you all for your messages, just got back from hospital.

Progressive MS

it came as no real shock and I have to say that although I have been in bits for weeks, I knew what he was going to say. It was coming on here and reading comments and symptoms of people etc that prepared me for today…I was able to take the news much more easily than if I hadn’t come on this site and had it sink in over those weeks.

thanks to all who contribute to these forums, you made it a whole lot easier for me in recieving the diagnosis today

thank you

10

hi

im glad you’re not in the dark anymore, it must be good to know exactly what you’re dealing with.

thank you for sharing your story too, it can help people to know that sometimes the answer does come eventually.

take it easy on yourself and just get used to having a “name” for your condition.

lots of love

mandy xxxxxxxxxxxxxxxx

11

Sorry about the diagnosis - even when it’s expected it’s still a blow

At least you know for sure now though - that really does make a difference!

Karen x

12

Hi Sorry to read your news, but it does feel something of a relief, doesn’t it because you now know the MonSter you’re fighting? I was dx PPMS on Dec 14 so I know just how you’re feeling. Stay positive, Teresa xx

13

So sorry for the bad news, what a bugger. Very best wishes to you and yours xx

14

Really sorry to hear about the diagnosis. Can only reiterate what others have said and stay as strong as you can.

G

15

Hi Positive Thinker

Sorry to hear of your diagnosis. On the up side you now know for sure what you’re dealing with now, and that’s important. It means that once you’ve adjusted to the news of actually receiving the dx itself you can start to move forwards.

Stay chipper PT

Debbie xx

16

Hi

Just wondered, may I ask if you know, what the criteria are for getting the diagnosis of PPMS?

Reason I ask is that I fervently believe I too have PPMS but am getting nowhere with Neuros and doctors (usual story).

I have had problems on and off since I was 15 with loss of feeling in legs, pins and needles, feeling very weak, mind-numbing fatigue and then five years ago all those things happening all at once, together with loss of bowel control, bladder problems, vaginal numbness, clumsiness, double vision, burning pains and perception problems and dizziness.

Most recent episode started on Christmas Day whereby I collapsed with usual symptoms plus new one of pain in back of right eye. Am off to Opthalmic Consultant in about an hour actually.

Just wondered though how you actually get to a diagnosis of PPMS as someone on this site recently said that most people with PPMS may never get a diagnosis, which really perturbs me.

I have asked my Neuro for an MRI but was told no as he didn’t want to expose me to radiation.

I am currently trying to get another appointment with him to say that I will pay for MRI myself if he will just refer me (I have a printed application form for an MRI at Nuada in London ready to take with me for his signature and referral but am expecting yet another battle).

Any thoughts/help with the diagnosis protocol would be much appreciated.

Thanks Dianne

17

I am sitting here with my mouth hanging open! Your neuro told you that MRI would expose you to radiation?! What a pile of ^"^+'~!!! MRI scanners are MAGNETS! They do NOT emit radiation. What does this neuro specialise in? Because I really truly hope it isn’t MS, because he hasn’t a CLUE!

Sorry, utterly shocked and very angry about that! (Btw, I have a doctorate in neuroscience and have used MRI extensively - I know what I’m talking about here!)

Re diagnosing PPMS, here are the latest McDonald criteria (the criteria that all neuros should be using to diagnose MS):

PPMS May Be Diagnosed in Subjects With:

  1. One year of disease progression (retrospectively or prospectively determined) [i.e. worsening symptoms for a year, looking back, or predicting forwards]
  2. Plus 2 of the 3 following criteria:
    A. At least 1 T2 lesion in at least 1 area characteristic for MS (periventricular, juxtacortical, or infratentorial) [i.e. at least one lesion visible on MRI that is next to the ventricles (the lakes of CSF in the middle of the brain), next to the gray matter (the outer edges of the brain) or in the cerebellum (the wrinkly bit at the back and underneath the main bit of the brain) or spinal cord]
    B. At least 2 T2 lesions in the cord [i.e. at least 2 lesions visible on MRI in the spinal cord]
    C. Positive CSF (isoelectric focusing evidence of oligoclonal bands and/or elevated IgG index) [i.e. a positive LP]

If you want to read the full details, google Polman et al (2011) Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria.

Good luck with the fight!

Karen x