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Newly diagnosed after 2 years in limbo.

Hi Everyone,

I was diagnosed last week with relapsing, remitting M.S. after over 2 years in limbo. I have posted before on the old forum about my probable M.S. diagnosis being withdrawn after a negative L.P. result. This was even after a second MRI showed more lesions (peri-ventricular, sub-cortical and in the pons area of my brain stem), plus abnormal evoked potential results and an abnormal neuro exam (brisk reflexes, positive babinski, clonus and nystagmus). My original neuro said that after the negative L.P. it was highly unlikely to be M.S. and I was basically left in limbo to get on with things. He told me that I might never be diagnosed!

After 3 more disabling relapses last year, I eventually managed to get referred to another M.S. specialist for a second opinion in another hospital and after another MRI showed yet more lesions including one in the medulla in my brain stem, I was told without doubt that I have M.S. He was not at all concerned about the negative L.P.

I am now waiting to start D.M.D.'s and have been referred for F.E.S as my new neuro thinks it may help with my walking. I now also have a M.S. nurse and I am starting a course of neuro physio. All of a sudden I am getting lots of support and treatment.

I just wanted to let people in limbo know that it is possible to get a M.S. diagnosis with a negative L.P.
Keep strong everyone in limbo. I hope you all get answers. Limbo is certainly a horrible place to be and I think that only people in the same situation truly understand how it feels.

A x

Hi Amily,

Really pleased that you have now got a positive dx, just a shame it's MS.

Hope you keep well on your med's.

 

Janet x

That is great news! About time too! That stupid flippin' first neuro - GRRRRR!

Make sure and check out www.msdecisions.org.uk re DMDs if you haven't already chosen which one you want - lots of excellent info on there.

I'm so pleased you came back and told us your news; I've thought about you from time to time and wondered how things were. Going to bed happier now! Thank you!

Karen x

 

Hi Amily

Thanks for posting, and I'm so pleased that you're now out of the grey Limboland area. Many of us on here have been in that situation a long time, and it's certainly a horrible place to be in.

Although MS is not something any of us want, I'm so pleased you now have a diagnosis, a good Neuro, and a lot of support via MS Nurse & Neuro Physio. I'm sure you'll find them a huge help for every step of the way forward.

Take care & sending every good wish

Bren x

 

Hiya..sounds like at last you are getting the support you need..sorry the outcome is MS for you..two years is a long time to be waiting..glad you got that second opinion though.. Hope you wil continue to let everone know how you are getting on..and your journey is a positive one..:-)

Hi Amily,

Condolences but congratulations too (!). You must be so relieved and thank you so much for sharing the news.  I hope whichever DMD you choose works for you and am so pleased that you're finally getting the support that you need.

Take care hun,

Mags happy2xx

Thank you all for your good wishes. Karen - thank you for thinking about me - You were a great support to me when I posted before on the old forum.

I have thought that I had M.S. for a long while now. I couldn’t understand what else it could be, so at the moment I am just relieved to get the diagnosis and that at last I am getting some treatment and support.

I have felt very alone with it all over the last few years. I am sure many of you feel the same way. It was my neuro physio who referred me for a second opinion with the new M.S. specialist after he called to see me on a follow up visit. He was concerned that nothing was being done even though I’d had 3 more episodes. My G.P. said that he didn’t feel it was appropriate to see another neurologist because I had already seen a M.S. specialist who didn’t think it was M.S.

I wish that I had been able to start treatment 2 years ago when all the other tests (except the L.P. ) came back positive for M.S. I keep thinking that I might not have the problems that I have now. My walking is now very poor. I use two walking sticks and can only walk about 200 metres at most at the moment. I also have severe bladder retention and have to self-catheterise now.

I am determined to stay positive now though and get as well as I can.
Sending good wishes to you all. Let’s hope that they come up with a definitive test for M.S. very soon so that nobody has to spend time in limbo any longer.

A x