And that’s my new Medical Driver’s Licence arrived by post today 
Hopefully by the time it needs renewed in 2025, I’ll have a diagnosis!
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I saw my consultant today.
Lumbar puncture results “unremarkable” although still waiting on one test result to come back from the lab.
Bloods taken today for genetic testing.
Neurologist suspects these will be inconclusive as well, which will then result in a “Functional Neurological” diagnosis.
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What a journey you are on.
It must be so difficult.
I am still waiting but no real systoms or issues at the moment.
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If they come back ‘unremarkable’, will it be a ‘functional neurological’ diagnosis or a ‘we don’t know yet’ diagnosis?
As my current neurologist has said, 10% of neurological conditions are too rare to have a recognised pattern and therefore a diagnostic name, because what they are able to see or test in the CNS is very limited whilst you are still alive. You’ve seen one of the most experienced functional neurological consultants and he didn’t think you really fitted the ‘functional neurology’ pathology.
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My other fear is I get no diagnosis at all (and the impact that has on my employment and claiming benefits, “you have no diagnosis, that means there is nothing wrong with you”), and no treatment and to just see my GP if my symptoms get worse.
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Yes, having no diagnosis, yet having ongoing symptoms that limit what you can do, does make it difficult when dealing with others. Are you managing work OK at the moment? I remember they found a new role for you. If you are managing, and your symptoms remain stable, then hopefully you won’t have to deal with the benefits system or need further discussions with your employer for a good while.
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Thank you, yes, I am managing work at the moment, in a different role. However I suspect that may change soon. Potentially the role that I’m currently doing may cease to exist soon.
The only thing I do hope if it comes down to that, is that I get offered some form of medical retirement, rather than just paid off through redundancy.
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letter from neurologist today about lumbar puncture results
“glucose was 3.2/4.3, protein 0.78 (mildly raised - unlikely of any significance), white cell count 2, red cell 0 and oligoclonal bands are awaited.”
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any idea if that is normal? what does oligoclonal bands are awaited mean?
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It means that the neurologist hadn’t received the test results for oligoclonal bands in the CSF fluid from the lumber puncture. Hopefully he should get those soon.
Apparently all the other results were normal, or not to be concerned about.
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Just to add to the “fun and games”, looks like I’ll be getting made redundant from work in the next two weeks 
Very sorry to hear this. If you are made redundant, hoping for you that it turns out to be a blessing in disguise, and that there is a better job out there just waiting for you. But not having a diagnosis and not having job security are both very destabilising, so I imagine you are feeling very stressed at the moment.
What a nightmare. I also wondered, having read through your posts, that it might provide closure on this particularly job.
Being unemployed will no doubt add additional stress but if you get redundancy, may provide a little breathing space.
It might be worth speaking with Citizens Advice and discuss help and options.
All this said, there is still the uncertainty around your diagnosis. It has effected so many decisions and sounds like as you are still suffering will continue to do so. What are your next steps?
Anyway, I phoned the neurologist secretary up yesterday, to chase the genetic blood tests up. It will be months apparently before I get the results back.
With regards to work, possibly not all doom and gloom, as union rep and area union rep are on the case.
And since the Adult Disability Payment Benefit is now available for Scotland (This is Scotland’s version of PIP), I’m starting on an application for that. While I may not be entitled to anything, “shy bairns get nowt” as my Scottish grannie used to say. But if I do get it, at least that’ll help with cost of living increases, particularly if hours get cut at work.
Keeping my fingers crossed for you.
Well a letter from the neurologist today. He is of the opinion that it is likely that the rest of my tests will come back negative or inconclusive. As a conseqence he thinks it is likely that I have a “Functional Neurological Disorder”.
So no follow up appointments.
No more testing.
Potentially some physiotherapy.
Just discharged with an “assumed” diagnosis of Functional Neurological Disorder.
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Well that’s a bit of a slap in the face with a wet fish, isn’t it?
Has your neurologist mentioned to you neurosymptoms.org? It’s a really good site for explaining what FND is and what it isn’t. If that is what you have, I hope you might find it informative snd reassuring.
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Not very helpful is it. Looks like it is a diagnosis of exclusion in your case rather than a diagnosis of FND based on postive features, which is not ideal. But maybe having a ‘named’ condition even if it is just an assumed diagnosis for lack of alternatives will help with external people such as the benefits system and employers, even if it is not definite. They are the ones that like labels. Will mean you are covered under the Equalities Act. Hope your GP is an open-minded one though.
When they have done a range of tests and are running out of ideas and have no definite answers, they will just stop and discharge the patient, so leaving you on your own. I’ve not been discharged but seem to be in the ‘don’t know what to do with this one’ folder, and left to gather dust!
Do follow up the physiotherapy, or continue on your own. I know you’ve had some that wasn’t that productive, but movement is why we have brains, and is one of the best things for maintaining brain and body health. The brain is very plastic, but takes much longer to rewire than physiotherapy for deconditioned muscles. Whether it is FND or disease or damage to the brain that has upset the wiring, rewiring is often possible.
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I was aware of the neurosymptoms website, after doing research myself over the past year or so. However the neurologist has not given me any information at all, just a “diagnosis” and a discharge.
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Further update.
Letter from neurologist yesterday, CSF Oligoclonal Band test came back negative. So more evidence that FND is the likely diagnosis. Although the genetic blood testing is still to come back (which can take months)
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