Letters from the Front Lines

Submitted by deb on Sat, 08/06/2011 – 23:52

There are times when a member says just the right thing, producing a post which is simply too good to let slide into obscurity. This is one of those posts;
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Hi “A”,

Many of us are on this path – You are at the place signposted, ‘Anger and Frustration’, near to ‘Death to these Idiots’, but if you keep moving forward and don’t linger there too long, you will find the other places, ‘I suppose I can see where they are coming from’ and ‘I’m in this for the long haul’. There is a particularly nice place to stop on the way, though it is easy to get lost and miss it, called, ‘Actually I am doing ok all things considered’ and ‘I may never get to the bottom of this, but I will keep moving forward’.

Joking aside, we have all been there, coming away from an appointment sad, angry to the point of bursting, confused…feeling abandoned and with a sense of ‘what was the point of that?’

I too have no genetic mutation. I am treated for PP and empirically the meds work for me. My daughter has now had a positive CMAP, so each time there is a little more news from my end, they perk up a bit more. I have had two positive CMAPs, but without that magic genetic code, they are still scratching their chins and going hmmm. Before genetics was possible, the CMAP would have been enough.

I too used to feel that this lack of definitive diagnosis was a slur on my character – ‘What – don’t you believe me?’

But I see it differently now. They don’t know *so much* about these types of disorders. New things are being realised every day. Often symptoms don’t fit a *known* expression of an illness now, but I think they accept that in the future there will be an explanation. But they can only work with what they know now.

Stay calm at appointments, explain you need help for whatever it is that you may have. Don’t be hung up on receiving the diagnosis you think applies. It may well be you are wrong, and their skepticism will point to them finding the right one. Prof __________ had an idea about something as I talked to him, and I found that he had run some copper tests. Something I said had made him wonder. And if it turned out I had a copper neuropathy, I wouldn’t be mad at him for deciding I didn’t have PP. He is also looking at gene sequencing for familial hemiplegic migraine.

But he treats me for PP. He wants to be sure, in the absence of a known mutation, and in the meantime, looks for anything else he *can* look for, to be sure he hasn’t missed something else.

I still feel frustrated – I want to *know* by their gold standard what this thing is. But it makes no difference if I know or not. I still have to take care of it daily. We are helping them unravel things. That doesn’t always leave us feeling all warm and fuzzy and cared for, because this is difficult stuff.

There is a fabulous paper by Prof Dimitri Kullmann at the Instiute of Neurology in London. Everytime I feel down, I read it. In it he frankly confesses how much they don’t yet know about channelopathies. I will try to locate it and post it.

The point is – a refusal to confirm a dignosis is no stain on us. They are not sure, but doesn’t mean they can’t help. How we come across to them makes a lot of difference in how they listen unfortunately. I have honed my consultation skills over the years and I do it a lot differently now. It is hard to be dispassionate and detached, but they can’t deal with a patient who is emotional, angry or going off at a tangent – I used to do all of that!

Let your anger out, but don’t let it stay. It is too detrimental to us. Better to use the energy to understand more about these disorders, so we can be on the same page with them.

“B”