Welcome
@Gradzy i hopebyou find this forum enlightning and fun. I am in the same boat as you but i have lost all faith in medicine. It goes back about 3 years ago i was feeling veey bad neuropathy symptoms and woke up and discovered i was paralysed from the arms down. To cut a long story short they diagnosed me with fnd even though i had a spinal tap with a elevated level of protien which in my mind is a sign of inflamation and damage. The worst part is no one told me of the diagnosis i found out by reading the report and secondly either they did not read or totally ignored the csf test.
One thing I've learned over the many years since my health nightmare started is that it is wise to ask to for copies of all test results.
Insist that you are given a copy, examine them for yourselves, research online how to interpret them and how to check for established reference levels. Because your GP or consultant can make a judgement that certain things aren't significant when they are, often because they're low but 'in range' or even too high/low but are dismissed. They can also just interpret them badly, perhaps because they've misunderstood your symptoms.
This doesn't relate to the neurological diagnosis but I had another major diagnosis during this same nightmarish saga (that is ongoing). When I received this diagnosis it triggered a memory that I had asked for this particular thing to be checked for roughly 4 years prior. I went into my papers and found that test result, only to discover to my anger that it was 'within range' but definitely on the low end of the normal range. I was angry and resentful of this discovery because my GP had merely told that the result was normal and I naturally dismissed that condition as the explanation for my symptoms.
During the intervening almost 4 years my relevant symptoms had grown and grown and by the time I was diagnosed I had dropped well below even the NHS's healthy range. Now, I understand that according to the NHS guidelines my GP was relying on, he didn't consider me out of range and 'sick'. Now there is a criticism to be made here of these reference levels and how they are misleading they might be because of different people become sick at different levels within the established reference range, but I'm trying to leave that to one side for now.
But it seems to be me that if I am at the low end of a wide normal range and I am complaining of relevant symptoms that it would be sensible to alert me to keep an eye on my symptoms or at least to advise me to come back for a follow-up test in say 12 months, whilst reassuring me that the result is fine if they insist. Monitoring would have allowed him to see if my levels had stayed the same, or moved down into the red zone.
Obviously I know now that at some point during those two tests, 4 years apart, my levels of this marker had started falling (perhaps had been falling already for years) and continued falling perhaps gradually, because I had also felt a gradual increase in symptoms over that time.
So in my view there was a failure there to alert me or to schedule a review to monitor for a possible health problem, all because of this obsession with 'ranges' and the sense that patients aren't entitled to a fuller picture of what is happening to their body. If I had been told that I was low-normal at that point then I would have either asked for yearly monitoring by the NHS or I would have happily sought private blood tests to monitor the situation myself via somewhere like Medichecks.
In which case - given the large decline -I would been able to catch myself dropping below the reference level and been diagnosed and treated earlier or much earlier. It's just very frustrating to realise that this information was sitting there right in my printed test results, which I hadn't examined at the time because i trusted the GP when he said they were normal.
I was made to suffer with these symptoms longer than I needed to, possibly years longer, because of this rigid focus on reference levels and not wanting to give patients full context to their results. It's often just 'fine' or 'bad' when it comes to blood markers with the NHS, and sometimes you can be on the low end or right at the boundary to 'deficient' and not be told.
Because of this experience, others like it, a long history of having my symptoms either explicitly or implicitly dismissed as being the product of my mental health (long, long before FND was mentioned by neuro)
and a variety of examples of medics clearly doing their work in a sloppy manner (not following guidelines, not doing appropriate tests, not asking the right questions, ignoring symptoms and more) I have sadly learnt to not automatically trust what any medical professional says to me.
