It feels like the holiday happened an age ago. I have had, and still have, quite a few hospital appointments to jump through.
The poor Cardiologist was off sick when we turned up the day after we got back. Thankfully he’s ok now and I’ve been rebooked for early September. The following week I was back for lung tests.
First of all I had to do some resistance tests with the machine shown here. It’s the same machine I was on last time for more basic tests. This time the tests were to see how my respiratory muscles were working.
Then there was the “sniff test” which was to see how my diaphragm is working. (scoring 19 and 21 mostly. No idea what that means).
I think it was measuring lung volume and other stuff. Anyway, first tests were sitting up and then the really difficult ones were lying flat. I don’t have the skill for lying flat and breathing at the same time! I sit up at night now. If I end up flattened out my lungs wake me up demanding I sit back up.
So it was a case of do a breath – then sit up to catch a breath. The chair was like a dentist chair so it went up and down!
Glad when that was over.
Results to be sent to the Respiratory Consultant. We’ll see what he says.
Meanwhile he had referred me to a throat/voice person at a different hospital. I have a lump that I can feel in my throat, around the area of my voice box. It’s not painful or anything like that, but it is annoying. It effect my swallowing and I wonder if it’s the reason I lose my voice so much and the back of my tongue goes numb. (One of my weirder symptoms. Whoever heard of a numb tongue!) Also could be causing the ear pain/ irritation. Who knows?
He warned me the waiting list was long so I was surprised to get an appt for the end of September. Pretty good I thought. Then they phoned a couple of days ago and have brought my appointment forward to Tuesday.
Meanwhile today I saw the Rheumi about the possibility of Lupus. He was a bit odd. He doesn’t think I have Lupus but he had an armful of bloods done which was pretty good of him. He seemed to think a lot of it might be the Fibro. I told him I was contesting the ME dx and he said he doesn’t use the dx of ME but says CFS or PVF but doesn’t think either of those dx are helpful as fatigue is rarely the root problem.
Well I agree that CFS is rarely a useful dx as it was a politically made up one. I think there’s evidence of Post Viral Fatigue from serious viral disease.
I disagree with him on ME. I think it’s very clear that such a horrible disease does exist. I just don’t think I have it (or I certainly hope I don’t. It’s bloomin’ orrible!)
He then went on to say he didn’t think I should be on so many steroids. He didn’t come up with what I should do instead. I had already told him my GP tries to not keep prescribing them but you know breathing isn’t an optional function. Anyway I am very fortunate to have found a good lung doc at last.
My heart rate and BP are looking better though which is good.
So far I only have one appt in September which is really good as I usually need a month to get the home ed rolling neatly.