Last reply 1 month ago
What on Earth…

So… I was diagnosed a little over 3 years over following a bout of ON. There had been other weird symptoms previously, but not enough for me or my GP to make any link to MS. Here’s what happened next:

Started Tecfidera.
Felt rubbish.
Had MRI which showed new lesions (albeit v small ones).
Switched to Gilenya.
Felt great.
Lymphocytes dropped to 0.15.
Taken off Gilenya.
Waited 4 months for Neuro appointment / any contact from the hospital.
Saw new consultant. Had to recap medical history.
In the meantime, had paperwork to renew medical driving licence.
Had another MRI.
Results back today. Medical licence declined pending further investigation into my ‘eye condition’. I can’t fill in the form because I don’t have an eye condition…
MRI described as ‘very good’ repeatedly by Neuro.
Dmt declined because lymphocytes are still low (0.7). Neuro says even if lymphocytes were normal, they would probably hold out on it because the side effects don’t outweigh the benefits…
Lumbar puncture ordered. When I asked why, new Neuro said: ‘We think it’s MS but we just want to rule anything else out.’
W.T.F.
What is she saying? I was misdiagnosed and have been pumping my body with all sorts of drugs for years? I’ve managed to do the impossible and cure myself?
So confused.

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nutshell88
1 month ago

Better than my case im perfectly fine even tho i stopped dmt 9 yrs by choice
Was daignosed 2004
Now they say maybe i was misdiagnosed 🖤 and must do genetic test
Started gileneya this yr after stopping dmt as i said for yrs


stumbler
1 month ago

@niccis , I suggest you politely decline the Lumber Puncture and ask your New Neuro to read your notes, pointing out that you were diagnosed back in 2015.


niccis
1 month ago

@stumbler I was diagnosed without a lumbar puncture and the new consultant says that’s very uncommon – is that right?


stumbler
1 month ago

@niccis, if your clinical history and MRI results indicate MS then a lumber Puncture is not required.

Have a look at the McDonald Criteria for diagnosing MS :-

https://www.mstrust.org.uk/a-z/mcdonald-criteria

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