Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Scared s***less. Any doctors in the house?

Hi all. Long time.
I really hate doing this. Popping in when I have problems, although I have been keeping in touch with a few members privately.

I am really scared.
For over a year now I have been having episodes of facial weakness on the left side, going down my neck and into my left arm. Even went to the ED a few times because of it. Then more recently I have been having episodes of speech problems, blurred vision in left eye and weird not so much sound as feeling like my ear drum is pulsating. Also a sharp pain from the top of my neck on the left side to the left of my head above my ear, especially when I cough. Not to mention headache and migraines that feel like the stem from the same area at the top of my neck on the left side.

Had a contrast CT angio of carotids and vertebral arteries today. I do not have the written results but I have a cd of the scan. One pic is a 3d image of just the heart and the arteries going up to my brain. I can see both carotids are the same but the left vertebral artery is approx. 1/6th the size of the right and then it completely dissapears just sfter the point where it loop around near the top.
I am very worried about this and wonder if what I suspect is true (left vertebral artery is blocked or something), how serious is this? Is it dangerous?
And how soon should it be treated?
My rhuemy ordered the scan and I don't go back to see him for 3 months.

Sorry to only come here with my problems I am just so very scared right now.
I hope you all are doing ok.

Trish
xxx

I don't want to terrify you or anything, but that sounds like Moyamoya disease. Look at some of the pictures and see if they look like yours.

I'm utterly clueless as to what it might be, but I know what it is to look at test results & become fearful. Why don't you call the Rheumy's office, tell them you've seen the CD, and ask for results over the phone & a written explanation as well. And if the results/explanation still leaves you fearful, explain that it frightens you & ask for an earlier appt. No one should have to wait 3 mos in fear. That alone will contribute to ill health, no matter what you're facing. Wishing you the best.

I agree to call the doctor right away and make some noise.

Thanks for the replies.
michiganmom: No does not look like any of the pics.
Symptoms are very similar though.

The fear is the worst thing. The public system here tends to drag the chain even if it is serious.

Most recent example
My dear friend passed away on Saturday the 4th of this month. She was only 48. Came home from holidays with some sort of chest infection and went to the hospital and had lots of tests done that showed a few things of concern. They sent her home with a specialist appointment for the 9th Jan. She went to bed on the 3rd and did not wake up.

I am trying not to stress too much and trying not to be a hypercondriac (sp) but it is hard when you have something happen so recently that leads to having little faith in the medical system.
Should be able to make some calls in an hour or so. Hopefully will get some answers then.

Thanks again

Does sound a bit scary,so the sooner you talk to someone about what it actually means, the better.

Thats the kind of thing I would ask my GP to chase up - both getting the written report and also making any arrangements for further investigation or consultation. Although your rheumie ordered the test, it isn't something that is within their brief to treat, so I don't see any real reason to wait for the rheumie appointment before dealing with it. Take the CD along to your GP in case they want to have a look at it, though I suspect it will be out of their range of experience too.

Glad your scans don't look like that. Your symptoms and description of the scan pictures screamed moyamoya to me. I hope you get some answers soon.

I'd call the doc and make noise. Any way you could private pay a doc for a consultation, then fight with the powers-that-be to get reimbursed? Hugs and prayers.

Well, atherosclerosis is really not that rare for your age. Good thing is that it most certainly happened gradually, so no emergency here. Bad thing, this is also why they won't call you soon.

I understand this is scary, but take this just as if it were angina. But for the head. A precursor of something worse that MIGHT happen, or not. But we have antiplatelets and aspirin for cases like that. You probably also are going to have a heart check-up since your other vessels are probably clugged too.

Exercise, eat well, lose weight, stop smoking. Best medicines ever.

Trish, have they checked you for stroke? Not to be alarmist, but your symptoms screamed stroke to me.

God, I hope it's something that can be fairly easily resolved. Please keep us up to date?

Love and Warm Hugs,