Hi Everyone
I had put a call into to see my Rhuematologist again as even though I only saw her for first time 7 weeks ago, during the UK bank holiday I became very unwell, blinding headache, blurred vision and dreadful joint pain. She fitted me on her list as an emergency on Friday.
Long story short, after initial exam, I was rushed off for an emergency MRI of the head. I had lost my Peripheral vision by about 70%, had numbness down left had side of face and weakness on same side. She wanted to rule out blood clot, but said I had/was having a mini stroke. Now this is down to the Antiphosolipid (Hughes Syndrome), the joint pain and rash, Lupus flare.
After MRI I was taken to a ward and copious amounts of bloods taken, the results were back within the hour, Vitamins D E and K were very low, so had injections there and then for those, plus I have to take oral meds for all for a month. I am unsure if these deficiencies are down to Lupus?
I was also given a steroid shot which is long lasting for 2 weeks to try to calm down the joint problems, I am sorry, but it was so manic I forget what it was called.
As I also suffer from renal disease, IGA Nephropathy, have had this for over 10 years, for the first time ever, I am now spilling protein in my urine, so now have to be worked up all over again by my Nephrologist, appointment to be confirmed.
I do not know the result yet of the MRI for clots, but the plan is to start me on a trial of Heparin, but she did not want to start this until input from Nephrology, plus, I am on aspirin now already low dose, and they had a dickens of a job to stop me bleeding just having had blood taken.
Naturally no one wants to hear they have had/are having mini strokes, but TIA's apparently usually pass without event, but can be a precursor to a major stroke, hence the MRI etc.
I was very frightened by it all on Friday, I had only gone along expecting an adjustment to my Lupus meds perhaps, and was in a way looking for reassurance. I thank heavens I went and thank heavens for my Rheumatologist, after 15 months of being dismissed and passed from pillar to post, to have someone actually on the ball is for me, a huge deal.
My bloodwork from my first visit, have definitely confirmed APS and SLE, sorry she did say how SLE was firmly diagnosed via bloods, but again I did not take it all in.
I have to go my GP on Monday for full medical review, thank heavens also for my wonderful GP, and I am back into hospital at Rheumatology for conductive nerve tests 6 June, a Saturday clinic.
I am totally drained, totally wiped out, not so bad with the pain, but my vision is pants, and I am very off balance.
I did remember one thing, a sun cream she has put on prescription for me, Uvistat, apparently she rates it as it is not like smearing lard on, I'll let you know what I make of that.
Sorry so long, and I am trying to keep positive, but am struggling with all the emotional side of this, although I wanted to know what was wrong, of course I did, I think I am now mourning the person I once was, and the life and independence I had, am sure many of you understand this point.
Thank you for reading.
I had put a call into to see my Rhuematologist again as even though I only saw her for first time 7 weeks ago, during the UK bank holiday I became very unwell, blinding headache, blurred vision and dreadful joint pain. She fitted me on her list as an emergency on Friday.
Long story short, after initial exam, I was rushed off for an emergency MRI of the head. I had lost my Peripheral vision by about 70%, had numbness down left had side of face and weakness on same side. She wanted to rule out blood clot, but said I had/was having a mini stroke. Now this is down to the Antiphosolipid (Hughes Syndrome), the joint pain and rash, Lupus flare.
After MRI I was taken to a ward and copious amounts of bloods taken, the results were back within the hour, Vitamins D E and K were very low, so had injections there and then for those, plus I have to take oral meds for all for a month. I am unsure if these deficiencies are down to Lupus?
I was also given a steroid shot which is long lasting for 2 weeks to try to calm down the joint problems, I am sorry, but it was so manic I forget what it was called.
As I also suffer from renal disease, IGA Nephropathy, have had this for over 10 years, for the first time ever, I am now spilling protein in my urine, so now have to be worked up all over again by my Nephrologist, appointment to be confirmed.
I do not know the result yet of the MRI for clots, but the plan is to start me on a trial of Heparin, but she did not want to start this until input from Nephrology, plus, I am on aspirin now already low dose, and they had a dickens of a job to stop me bleeding just having had blood taken.
Naturally no one wants to hear they have had/are having mini strokes, but TIA's apparently usually pass without event, but can be a precursor to a major stroke, hence the MRI etc.
I was very frightened by it all on Friday, I had only gone along expecting an adjustment to my Lupus meds perhaps, and was in a way looking for reassurance. I thank heavens I went and thank heavens for my Rheumatologist, after 15 months of being dismissed and passed from pillar to post, to have someone actually on the ball is for me, a huge deal.
My bloodwork from my first visit, have definitely confirmed APS and SLE, sorry she did say how SLE was firmly diagnosed via bloods, but again I did not take it all in.
I have to go my GP on Monday for full medical review, thank heavens also for my wonderful GP, and I am back into hospital at Rheumatology for conductive nerve tests 6 June, a Saturday clinic.
I am totally drained, totally wiped out, not so bad with the pain, but my vision is pants, and I am very off balance.
I did remember one thing, a sun cream she has put on prescription for me, Uvistat, apparently she rates it as it is not like smearing lard on, I'll let you know what I make of that.
Sorry so long, and I am trying to keep positive, but am struggling with all the emotional side of this, although I wanted to know what was wrong, of course I did, I think I am now mourning the person I once was, and the life and independence I had, am sure many of you understand this point.
Thank you for reading.
