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katchan

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About katchan

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    Wiltshire, UK
  1. Hi, I am seeing my consultant next week! Do you know of any trials, etc., concerning en coup de sabre? Or anything else such as experts, as my consultant has been trying to find out with no luck as yet. Kate
  2. Hi, I am after some advice as I am not seeing my consultant for a few weeks. I have en coup on the right hand side of my forehead but in the last few days have noticed that I now have a dent inside my dent and my right eye is painful, feels like I have been punched. I have been off the mycophenolate for about a month now as my consultant said that was the only way they could see if it was working. Feeling a bit scared of what is happening, any advice greatly accepted.(have only had en coup for 17 months and came on very quickly). Kate
  3. Hi again, Well went to see the neurologist, told me he thought En Coup was really boring and without even examining me told me I am suffering with severe migraines and gave me some antidepressants to control them. I feel really let down by the NHS, feels if they don't know much about something just chuck some pills at it and hope for the best. I'm seeing my dermatologist soon so maybe will talk through with him, fed up of feeling like a freak!! Kate (katchan)
  4. Thanks Amanda, I have blood tests every 4 weeks and all have been fine, I have never considered that it could be my medication making me feel this way, I will mention this to my consultant next week. I have a scan booked soon and suppose I am a bit scared as two of my close family have brain tumours so am probably being a bit paranoid. Will keep you updated on what the consultant says, thank you for the advice. Best wishes, Kate
  5. Hi Everyone, A lot has changed since the last time I posted. As you know my en coup de sabre came on very suddenly at the age of 33. I have been on mycophenolate for nearly a year now which my consultant wants me stop for a month in March to see if it has been working. I have been suffering with severe headaches for a few months now with numbness in my face and arms and extreme fatigue. I have been referred to a neurologist who I see next week, not sure if this is all connected or not. I will be glad when I get some answers, if any one has had similar I would love to hear from you, Best wishes.
  6. Hi judyt, It would be great to be able to talk to some one with the same condition in the UK; it was really good to find this forum and the support here seems really genuine. Let's hope they can do some more research into en coup de sabre to make it easier for those in the future and find a drug that actually works and not just one that they think may help a bit x
  7. Hi, I'm Kate and live in Wiltshire. I was diagnosed with en coup de sabre in February; it seemed to come on over night; my doctor was very good and got me in to see a consultant within 2 weeks. I had a blood test, biopsy and MRI scan which just confirmed the en coup de sabre. I am presently taking mycophenolate twice a day for this; don't know if it's doing any good but I see my consultant every 6 weeks for check ups and he takes photos to compare hair loss and dent progression; it seems slow but who knows what will happen. He told me that this is very rare and would possibly not find anyone else with the same condition in the UK which was scary as having an illness that you know very little about and being alone with it is not a nice thought. I am 33, married and have a son of 3 who luckily does not have the same condition. It would be great to talk to someone with en coup de sabre who knows what I'm going through.
  8. Hi, I was diagnosed with en coup de sabre in February 2012 after I found a dent on the right hand side of my forehead one evening. A few days later I noticed quite a lot of hair loss so went to my doctor, who was bamboozled by this, and sent me to a dermatologist. A couple of weeks later, after an MRI scan, blood tests and biopsy, they told me I had en coup de sabre. I am currently on Mycophenalate (Cellcept) for this and see my consultant every 6 weeks to check the progression of this disease. My consultant was trying to find some one else in the UK with the same condition but as yet as failed to do so. As I was only diagnosed a few months ago I do not know a lot about this and would love to talk to some one with the same condition as it is very lonely and a bit scary when you don't really know what is going to happen in the future with this. Any advise would be gratefully received. I am female, 33, and live in not so sunny Wiltshire!
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