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149 Posts
Discussion Starter · #1 ·
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.

1,999 Posts
Karen, I totally sympathize with you. As you say, your rheumy was on the ball this time tho.

Giving yourself the time to mourn the person you were is an important act of acceptance toward the new life you live. [I was drug on this journey kicking and screaming...literally!] We must go thru those stages in order to come out on the other side and focus on our "now" life.

Something I read back at the beginning of my journey with this unwelcome companion was to draw pictures of the following:
a] your disease
b] your doctors and your disease
c] you and your disease
d] you, your doctors, and your disease

For me it was one of those "aha" moments to put a face on what I was battling. Once I had a picture of it, I knew who I was battling.
Trust me, I am not an artist, but that didn't matter in this task. As time went by, I was better able to handle the ups and downs as I knew that my doctors were doing their best to battle this beast.

Perhaps this will give you [and maybe others] some insight on how to work your journey.

279 Posts
Hi Karen

So sorry youve been through so much. Bless you good to know your Rheumys there 4 you. Hard one to except

Im a bit like Sally kicking and screaming not wanting to go down this road, in the end you have no choice but to except it.
Im still morning my old self.

Sally dont know about drawings ooooooooh I might scare myself the mood Im in at the moment.
Might try later never herd of doing that.


The Other Illinois Tammy
1,193 Posts
It sounds like it was a good trip to make. Thank goodness you called and went in. So many times we blow off our symptoms (thinking that we will be told we are crazy yet again). There was an angel watching over you that day.

The dizziness (balance problems) could be from all the blood taken and the meds that were pushed in so fast. If these don't ease soon I would put yet another call into the doctor to see what she thinks could be going on. Often the meds we need to get things back to our normal have some of these nice affects on our bodies. Keep an eye on it all and don't wait to call in any changes that are bothersum.

We are here if you need us and I hope that you feel better soon.

10,208 Posts
Hi Karen,

Your story is a lesson for us all not to just let new and disturbing symptoms go unchecked. I wish you luck in getting everything sorted out. Good luck with your upcoming appointment.

Take care,
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