Last reply 9 months ago
Those 3 letters!

Hi there, I have just been diagnosed with P.M.L. scary sh-t!!! 1 in 1000 chance and I was the chosen one!
Needless to say my Tysabri infusions have ceased. I am currently paralysed on my left. Help!!!
Claire x

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9 months ago

@clairechiz can I be an old fogey and say I don’t know what P.M.L. stands for!๐Ÿ˜

9 months ago


“Progressive multifocal leukoencephalopathy (PML) is a rare and usually fatal viral disease characterised by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).”

9 months ago

@clairechiz omg chick thatโ€™s not good

Did they not test your immunity to it before you started the meds?

I thought that they did to ensure that you wouldnโ€™t or couldnโ€™t develop it?

Did they ever warn you that this could still happen or that there was a risk of it, despite your initial blood test indicating that u had sufficient immunity at the start?

If not, then I would sue them

But thatโ€™s for another day, at the moment you will just be wanting to feel a bit better and get a handle on it all…

I read that they deal initially by flushing the meds out with blood transfusions? Are they doing or made arrangements for this?

I hope so flower as this will surely help a little.

Chick, find out as much as you can …
and do NOT stop hounding your neurologist to do everything he can you relieve some of your present symptoms and give you some strategies, advice and symptom relief

You need to do everythin you can to support your immune system flower in the meantime.

So lots of antioxidants lots of rest, and just take one day at a time lovely๐Ÿ’•

9 months ago

Dearest &clairechiz I didn’t know what the 3 letters stood for, nice Stumbler has explained it all, I’m so sorry for you the ms is enough to deal with without something else as well,I’ve had to deal with Breast Canceras well but I’ve just been discharged from the Oncology department after 8 years soIve got something

9 months ago

Got cut off, so there is hope, I’ve survived 26 years with the beast and cancer as well so keep your spirits up, we’re all routing for you. Sending love and good thoughts๐Ÿ’‹๐Ÿ™๐Ÿป๐Ÿ‘๐ŸŒž๐ŸฅŠ๐ŸŒ„๐Ÿ›๐Ÿ”œ๐Ÿƒ๐Ÿ’Š๐Ÿฅ‚๐Ÿ‘‘

9 months ago

@mermaidia11,when I started Tysabri I knew I was JC positive and so at higher risk but I was relapsing a lot so it seemed worth the risk! I did have 18 months relapse free!
I was monitored closely for changes.
It has been caught quickly but has caused damage that is probably not going to reverse.
Plasma exchange was ruled out as I was “well” so no need.
Scanning me every 3 to 4 weeks now to keep a close eye . Scary!!!

9 months ago

@grandma thank you so much for your good wishes. Yep as if MS alone isn’t enough!! Im sorry youve had an extrs battle as well. We have to dig deep to find that bit of extra fight don’t we?
You take good care Cxx

9 months ago

I am sending my kind regards. Try to keep some positivity. Take care.
LJl. X๐Ÿ™…โ€โ™€๏ธ

9 months ago

@clairechiz you are strong to have coped with the relapses that led you to tysabri and for what you are going through now. The decisions we are forced to make weighing up risks against the need to manage MS sometimes feels like the hardest burden to me. Concentrate on the things that help you stay positive and do look after yourself. Stay strong xxx

9 months ago

Oh hun, as if MS isn’t enough eh? I hope you do go on to make a good recovery, the damage may heal itself in time. Look after yourself and keep on fighting that fight xxx

9 months ago

@clairechiz, how are you doing?

9 months ago

Dear @clairechiz,

I am so sorry for you. I’m glad they at least caught it early, and are looking after you. Stay strong, and keep fighting. You know you have the love and support of all of us who do daily battle with this disease.

Best wishes, and much love.


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