You may remember that in November last year I wrote about us finally seeing a GP about TJ's sensory disturbances (And Now We Wait). He's been having pain and some sensory issues since 2008 but in the past 12-18 months they have progressed quite significantly and in October TJ went for nerve conduction tests and then we followed up with blood tests and a lot of waiting…
The GP finally agreed to refer TJ to see a neurologist in January and to speed up the process we decided to go private for the initial consultation. That was today. It feels like a long time coming.
We discussed all the symptoms TJ has been experiencing, all the pain (which keeps him awake at night and stops him from doing a lot of things he'd like to do) and all the sensory stuff (like not being able to tell if the washing is still damp when taking it out of the dryer). And we discussed the various medications he has tried in order to deal with these symptoms, the tests he has already had, our fears over what it might be and the affect all of this is having on TJ as an individual and us as a family. And the consultant took it all on board with complete sympathy and sincerity, which was very welcome.
He carried out a thorough physical exam and then sat us down for a chat – to say we were nervous is an understatement, but we were ready to get some answers. The problem was there are currently no answers and may never be any…
According to the neurologist, it may be that we never find a specific cause for TJ's symptoms. In fact his actual words were, "if I were a betting man I would wager that we'll never know exactly what is causing these symptoms". However, the consultant also put a very big emphasis on the fact that this does not negate the fact that TJ is suffering from some rather extensive symptoms and managing these is a priority.
He explained that TJ's symptoms do not suggest anything major such as MS, cancer, diabetes etc, which we would have expected to have progressed much further and faster than they have, and whilst that doesn't rule out things like MS completely it makes them highly unlikely. He also explained that a lot of the tests look at large fibres in the nerves, whereas a lot of people have issues with the small fibres which are rather more difficult to study and find a diagnosis for, and this may be where TJ's issue lies. Although apparently TJ's symptoms are rather more extensive than the typical small fibre neuropathies.
The consultant was very sympathetic in the fact that not being able to diagnose the problem can be frustrating, but explained it is still a good sign that it isn't anything major which would likely progress further and further as time goes on. This is hopefully as bad as it gets and our aim now is to work on finding the best way to manage the symptoms.
To be honest we had already considered this as a possibility. TJ used to work on a neuromedical ward and so has already self-eliminated a lot of the more typical conditions. He'd also eliminated some of the less common conditions, purely based on the symptoms he knew these would cause had he been suffering from them. But it is a relief to hear that from a specialist in the field. It is also a relief for TJ to hear a specialist qualify what he is going through, as all too often it is far too easy to question what you're experiencing and believe it may be "all in your head" even when you know that is not the case.
So our next step is to go back to the GP and discuss the suggestions made by the neurologist with her. He mentioned that we could go down the route of CT scans and a lumbar puncture, but as these may not provide any further clues to a diagnosis we may decide we'd rather not go down that route. It is something to discuss with the GP. He also said that we can discuss the treatment options with the GP and start with the one that seems the "least undesirable" to us first (which worries me slightly as to what he is going to suggest, but we'll wait and see).
All in all we are both very pleased with the consultation. The neurologist was extremely sympathetic to what has been going on, how TJ has had to change careers twice because of this and how it is holding us back as a family as well as limiting TJ in what he can do. Hopefully we can find a treatment plan which works far better than the few suggestions offered by the GP so far and can move forward with less pain and more freedom.
But for now we have a little more waiting to do…