Crossroads

This week I feel like I am coming up to a fork in the road.

On Thursday I am getting the results from some DNA testing that I had done.  These tests were suggested to me by a specialist who had told me he could and would help me with the nerve pain in my legs.  When he rang me to tell me that he didn't feel that surgery was an option, I was devastated.  Now that sounds weird, being upset that I couldn't have surgery, but after having the exact same progression of nerve symptoms in my legs as I had in my arms, and knowing the relief on the recovery table after my ulnar nerve transposition surgery, being told that he wouldn't operate on my legs was devastating.I felt like he was fobbing me off, like countless doctors have done over the past 20 years when dealing with my pain.  But we insisted on having another follow up with him, and he convinced me that he hadn't forgotten me, he had actually been researching me, and that he strongly felt that this was the answer.

Hereditary Neuropathy with a tendency to Pressure Palsy.

It's hard to say, let alone get your head around.

The specialist I had to see to have this DNA testing done had an absolutely lousy bedside manner.  He read my notes, and hardly asked me any questions.  When hubby and I put things to him, we seemed to be interrupting him.  He did all the nerve conduction tests in his office, and told me straight up that it wasn't going to be HNPP, but he would do the blood test anyway, since I was there.  He also told me that any relief I got from the ulnar nerve surgery was most likely circumstantial, and that I wasn't actually experiencing true nerve pain!!

So I left there absolutely devastated.  To have so many therapists work with me, and say that they felt conclusively that my nerves were compromised, this guy was just a jerk!!

That same week, a good friend had found a Public Forum into Chronic Pain, and I was booked in to go.  It was then that I was able to ask my questions, and tell them how I had pushed and pushed for so long, trusting my knowledge of my body, knowing that the pain wasn't in my head.  They then used my example in the response to several more questions telling them to keep pursuing the answers.  At the end of the night, I spoke to the MC who was a researcher specialising in lower limb and ulnar nerve neuropathies, and he said that I definitely sounded like I had HNPP!!  He said that I sounded like I had a classic case, and he would be very surprised if my DNA blood tests came back negative.

So I had to sit and wait.  I had my appointment in September, and all I could do was wait. 

Then I got a call from the specialist, saying he had my results, and could I come in the following Thursday.  I have no idea if they just didn't realise I had an appointment already, or if something came up in the tests.

I started looking at different hereditary neuropathies, and discovered Charcot Marie Tooth Disease.  I couldn't believe how perfectly it fit, not only the nerve issues, but also IBS and failing eyesight. Type B also presents with nerve conduction velocities within normal ranges.  I was so angry with this specialist, who wrote me off, even when his reasons were so inaccurate.  I kept researching, trying to find less significant causes, but I keep coming back to this.  

So now, the crossroads.

On Thursday, I will enter a new phase of my life with pain.

The first option, is the doctor tells me that nothing showed up, that everything is "perfect" (as I keep being told),  In this scenario, I have to resume the fight, to get back to other specialists and insist they help me find the true cause of my pain.

The second option is the doctor will finally give me a diagnosis.  An actual name for my condition.  Something that when people ask me what's wrong, I can say a convoluted name that they've never heard of, but it certainly doesn't sound made up.  And then I can work out how to live my life with it.  What the prognosis is, how other people have dealt with it, possible medical interventions.  I can find support groups, other people who have the same thing as me.

It is so hard to know which way to pray.  Both ways are going to be hard.  Both ways are going to have their toll on my family.  As always, I am asking God to heal me, but I also accept that He has His plan, and it will come about.  The only thing I know, I will trust Him through this.