Please can I ask if anyone else has been given differing information from the neurologist and rheumatalotogist. I had neurology appointment today and have been told that I have not had any TIA's (been admitted via A &E with TIA's, GP has them as TIA's and so do rheumy) that they are TIA like episodes caused by vasculopathy which is a spasm in the blood vessels and that Lupus causes this.

However he also said my Lupus is not active and it was only once I left that I thought how can it not be active but cause these spasms.

He also said that my headaches have got nothing to do with any of this and that I have a contracted neck muscle, he says this last March and said I needed physio. I paid privately for 2 sessions and was told that nothing was wring and I was wasting my money, they wrote to the neuro and told him this.

Today he has said the same thing and also made some medical reference to my forehead (can't remember the term) and said that I have a line on my forehead which shows I have an over active muscle and this can cause headache. He is referring me to a head che clinic where they are trialling Botox injections, great I hear the ladies say it will get rid of my wrinkles, alas no it will be injected in the back of my head!

He is also arranging for MRI as nearly two years since last one. And he is recommending that I do have further Rituixmab but I have cyclo (had one round of this in late 2009).

I would greatly appreciate people's thoughts on all this and also would like to know if anyone is treated at Leeds.

Many thanks for reading my question.


2 Replies

Sorry that should say that I do not have any more rituximab, rheumy has me down to have annual maintenance treatment but neuro thinks not too to have cyclo instead.

Sorry for error in question and also the typos!


Hi I have sle but i also have tremors in head neck and hands/legs I was diagnosd with dystonia at 15 and had botox from 18 on and off for 20 yrs yes 20yrs, I had the injections every 3 months in my neck I found that It gave me about month and half peace but it gave me headaches/stiff neck problems swallowing etc. There wasnt anyother option at that time so i went with it but all im saying i suppose is see if the good out way the bad. Through having so many injections over the years I think its caused other problems the nero doc was only really interested in doing the jabs and missed the lupus symtems even thou I kept asking if he had any ideas. Good luck


You may also like...