I wrote yesterday about going to see a neurologist and thought I would let you know how I got on.
First of all it was a major drama trying to get to the hospital, I had to take the afternoon off work and had arranged for someone to cover me. The person who usually covers my lunch from 12-1 was poorly so my manager said I would have to work through til one. I tried to tell her that my apt was at 1.15 and I would need time to travel to the hospital, she said if my apt was at 1.15 then 15minutes travel time was enough, explained that the hospital is at least a 45 minute drive and she said she technically only has to give me my apt time off so what was my problem... I swear to God I would have be able to explain quantum physics to a toddler better than explaining anything to this woman!
I arrived 20 minutes late for my apt but luckily they were running behind so I could still be seen.
The nuero had got me to complete a headache diary for 6 months so we went through it to try and see if I was any better, even though I get headaches almost daily they dont really bother me they are just a pest.
I explained about having dizzy spell, blurred vision, pressure and rushing in my head when standing, but he was only interested in the headaches.
This is what he suggested to me:
1. I stop taking anti-inflammotories
2. I stop taking all painkillers. Paracetamol, co-codamol, tramadol and dihyrocodeine.
3. I stop taking steroids.
4. I stop having steroid injections.
Obviously I thought this was him having a joke but when I asked him if he was serious he assured me that he was.
He also said that lupus patients do not normally suffer from migraines or headaches so the 2 are not assosiated.
He said he doesnt think my primary problem is lupus, he thinks I am having migrains. I told him I thought that the pain was supposed to be awful with migrain and the headaches I get are only niggly.
All in all it was a bit of a disaster, I told him that I would most definately not be stopping any of my medications as professor D'Cruz has worked very hard getting me to a semi stable state and stopping medication would surely send me into a rather big flare.
He said he is not there to control the lupus he is only able to treat headaches, I said surely he should be looking at the whole picture rather than just one symptom.
We went round and round in circles and in the end I asked him to discharge me from his care as I do not think he is experienced enough to deal with such complex medical conditions.