Well ED took 6 hours of my life with no answer in the end, no medication...big nuffin. Which is very frustrating.
They did chest xrays, bloods etc and nothing showed. I am happy my levels did not drop btw, but did want something to explain not being able to breath. They just did the minimum and said see your haemo or come back if it happens again. In other words go away, your not going to have a coronary etc today, fobbed off to someone else, and hopefully I am not on duty should you need to come back lol.
Even though I turned up with shortness of breath, flushed, high heart rate, sweating etc, from walking a block to the hospital. I was triaged at 4, and waited two hours before seeing someone. Off course I was breathing normally two hours later because I was just sitting down. The reason I was there was with minimum exertion I could not breath. Perhaps they should have got me to walk the ED a couple of times to make a proper assessment.
So lucky I have an appointment next week with the haemo, which I will raise those issues Chirley.
Chirley I did have a body scan which showed active bone marrow in my neck shoulders, knees, left side ribs etc before I was dx. Perhaps you should get a scan (if you haven't already) and see where there are some problems. At least you know it is not in your head, and the reason I pushed for a BMB which got the dx. From that I had additional scans ordered, such as ultrasounds. My shoulders have bursitis, which I get the cortosone injections for, which help for a couple months then you have to have top ups. The neck is relieved by the epidural for a while but like the cortosone wears off. The reason for the neck pain and spasticity has not been revealed. I do need to get the MRI done. The opthamologist thought it was migraines that caused my blurred vision, although only once did I have a headache and I don't get migraines. He did find a cataract (at my age
) and said that would need to be operated on in the next couple of years. As for the hands, lip, eye twitch etc, I am thinking it is a vitamin deficiency, I know I am very low on D, which can also point to MS. I used to think it was poor circulation and that it was cold, but I have got cramps in my feet in a hot shower. I think I will ask the haemo to run some vitamin tests.
Chirley if you get the same sort of pain as I do, it is not in your head, although docs can think it is. Just keep pushing for tests, or change docs like I did.
Feel free to PM me Chirley if you want to ask anything. Hopefully I will be useful for once in these forums, instead of just asking the questions (yay)
Off to google caeruloplasmin.
Honey