New hope for neuropathy

My small-fibre neuropathy has been slowly worsening for a long time, but I’ve just had some treatment that seems to bring an improvement to my symptoms.

The main neuropathy problem has been the loss of sensation to touch and temperature in my hands and feet and some mild burning pains all over, mostly in my legs. I was getting more clumsy and a tiny bit unsteady – and there seemed no way of preventing the steady deterioration.

I’d been taking Lyrica, a nerve painkiller, which had been working well. Unfortunately the drug is on the banned list for power flying, but I was able to carry on gliding. The side-effects made me very fatigued and sleepy, so I wasn’t in the best of shape. Jan and I were due to go to England soon for a holiday and to visit friends. I decided to cancel my ticket because I didn’t feel fit enough for international travel. Jan will go as planned.

Now for the good news! My neurologist applied for me to have some intravenous immunoglobulin treatment. It’s expensive, so she had to write a submission to the people who approve these things. They approved, so I was lined up for a night in hospital and a couple of infusions. She suspects that my neuropathy may be a recurrence of the Guillain-Barre Syndrome I had in my twenties.

I had a comfortable room at Strathfield Hospital and a briefing by the hospital doctor and my specialist before the treatment began. I was hooked up to an infusion machine and a 400 ml bottle of Privigen containing 40g of human immunoglobulin (Immunoglobulins, also known as antibodies, are glycoprotein molecules produced by plasma cells – white blood cells). The idea is that if my problem is auto-immune, the new cells will replace my dodgy cells that are attacking my nerves. (I think – nobody seems willing to spell out exactly what is wrong and how this might work!)

I had a couple of those bottles infused very slowly for a start, and then a bit quicker. They checked my vitals every 15 minutes for a start. All went well until about 7pm, an hour after the infusion had ended, I had some violent tremors that lasted about an hour. Very scary. I was also left with a headache and back pain – common side-effects. Next day I had another couple of 400ml bottles, this time without the shakes. They kept me in for a second night just in case.

Three days later, some feeling began to return to my hands and feet. Wow! I was so pleased. I still have some pain, but I feel less fatigued and more mentally alert (probably not saying much in my case!).

One week later, the improvement seems to have stabilised. It’s not clear if the improvement will persist or fade away. My specialist told me I should have immunoglobulin infusions once a month for a few months. I guess it all depends on the results. But so far the treatment has brought an improvement in my symptoms, and a bigger improvement in my state of mind!