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Some Good News At Last

If you’ve been following us here at The Patch for a while, you’ll know that TJ has been suffering from some truly awful symptoms that have been getting worse over the past year or so, to the point where we were seriously beginning to worry about how bad it would get.

We’ve been to appointment after appointment, fighting hard for a diagnosis and treatment, and TJ has struggled with balancing out the side effects of pain medications with the pain itself (which is better: being in unbearable pain and struggling to function, or suffering from lower levels of pain but still struggling to function because the pain meds make you so woozy and sick?!)

The nearest we have got to an answer is a “probable” diagnosis of Small Fibre (or Peripheral) Neuropathy. But as this kind of neuropathy is most commonly seen with Diabetes, which TJ does not have, the neurologists we have seen have decided to simply class it as “idiopathic”. This basically means they don’t know why he is suffering from these symptoms.

Two separate neurologists at two different hospitals have given this answer to us, leaving us feeling like we just have to accept that this is it. And as TJ has not responded well to the “typical” treatments, he has just been given one pain medication after another. The two which were most likely to help had such awful side effects he could not continue on them.

But what about the good news, I hear you say?

Well, today we saw a pain specialist at our local hospital and I cannot even begin to tell you how much I love this man for actually caring enough to look at every single option, including a referral back to the neurology department to try and find out why TJ is suffering from these symptoms.

Finally we have found a doctor who, of his own accord, agrees with us that it is ridiculous to give the diagnosis of “Idiopathic Neuropathy” when they haven’t ruled out every option. Out of the depths of his memory he remembered that exposure to certain metals can cause neuropathic symptoms, and as TJ used to be a plumber and first started getting the very early stages of these symptoms whilst still working in that field, exposure to metals such as lead could be an explanation. It might not be that, but it is certainly worth ruling out!

The doctor we saw today is writing to TJ’s GP to recommend a referral back to the neurology department to look into this further. But even more astonishing (to me) is that he also looked up the name of a neurosurgeon at that same hospital who he thinks TJ should see to discuss the possibility of a Spinal Cord Stimulator. The reason for this? Because, as the doctor said, even if we find a cause… “what next?” Finding a cause is only half of it. TJ is only 33, and so he has at least 30 working years left ahead of him. He needs to be able to live his life and work (like he wants to) and therefore we should be looking into all options to make that possible.

Isn’t it wonderful to find such a caring doctor? Especially after years and years of being fobbed off. I mean, TJ has already changed careers twice and gone through multiple “probable diagnoses” before getting to this point. It’s about time we got a plan in place!

Talking of plans, that’s another thing the doctor did for us. He created a two-year plan of action. He talked us through how useless the pain medications that TJ is currently on are for neuropathic pain. They just aren’t effective for this kind of pain and so there is no point in him putting up with the side effects from them.

Unfortunately the two which are well known to be effective for his kind of nerve pain are the ones he has struggled so terribly with, and the target dosage for these is much, much higher than the dose he was on before. However, the doctor explained how ridiculous it was for him to have been started on the doses the GP gave him, because they need to be started on a much lower dose and given several weeks for your body to become accustomed to them before that dose is increased. To reach the target dosage of one of these medications will take roughly 6 months, to reach the target dose of both together will take around a year. That’s a pretty long process… but it is a process we can begin to take. And that is a massive relief.

In the space of maybe 15 to 20 minutes we went from feeling totally helpless (and hopeless) to having hope that one day TJ may well be able to live a much happier and healthier life again. He may be able to do more with Little Man and me, to go for walks in the woods, and to work a full-time job without making himself so ill he has to spend the weekend in bed recovering. He won’t be totally pain-free, but he will be able to live his life again, and that is the best news we have ever received.

Our Consultation with the Neurologist

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…