I find it hard to believe that the neurologist discharged me last week. He has decided that my symptoms (permanent numbness down the right hand side, ongoing migraines) should be dealt with by his colleague in the specialist headache clinic. No reference to whether what I’m experiencing is due to being on methotrexate (MTX) injections last winter. (I’ve researched it and am totally convinced that this is due to the MTX as I never had migraines or numbness before December). The nerve conduction studies and MRI on my brain all came back negative which is reassuring but there is no sign that these symptoms are abating. He suggested trying Gabapentin once I have been on Sulphasalazine (trying to get the rheumatoid arthritis stable) for about 3 months. Frankly, having read the potential side effects, I am not feeling encouraged to try it, as I have a lot of those problems already (such as breathing problems, eyesight issues etc!). So, having been discharged from his clinic I have no idea how long I’ll wait to see the headache specialist. I saw her briefly a couple of months ago as an in-patient but that doesn’t count as I’m now an out-patient again. So confusing.
At the end of the appointment I tried asking him about Postural Tachycardia Syndrome (POTS) as I know lots of people with Ehlers-Danlos Syndrome have it, and that it could explain the low blood pressure, feeling dizzy, palpitations and so on. But he simply said ‘We don’t deal with POTS in this clinic’ and ‘These symptoms are troubling you. Have you considered cognitive behavioural therapy?’ before shaking my hand and sending me on my way. I was stunned to see that he had ticked the ‘treatment’ box on the yellow outcomes form that I had to hand to the receptionist as he had suggested that I take Gabapentin in 3 months’ time, not now, and it is rather misleading. I had mixed feelings leaving, from relief that I don’t have a sinister condition to frustration that the neurologist thinks these symptoms are ‘just migraine’ – permanent numbness and one arm being colder than the other is not typical for migraine. In the meantime, life carries on and I just take it day by day until the next health appointment.