Hope things go better today than you expect and that you're seen by someone who has some knowledge of ME or at least uses their own sense and judgement instead of following the pack. Good luck.
Well I am back!
….after what was one of the most frustrating and unpleasant medical appointments I have had in 35 years.
I have had to spend three hours calming down. Not quite made it yet!
I was supposed to have a three hour appointment to investigate the cause and damage caused by malignant hypertension.
I saw an Indian (I think) doctor with an unpronounceable name.
He had clearly made up his mind before I had even walked through the door. All he could see was an ME diagnosis which he clearly despised. (Later confirmed by someone in the hospital)
I started to explain my latest episode, the damage of a previous bout to the vestibular system, the resultant encephalopathy symptoms which are so severe they are on a par with severe ME for about three months before they recede, the angina caused, I was told, by the impact of the rapid spikes reaching on one occasion that I know of, 250/130+, but usually around 230/130 and uncontrollable so far. One bout left me unconscious for several hours and unable to wake up properly for a week. Very unpleasant and very disabling symptoms followed this.
However, all this doctor could see was the ME diagnosis.
First he told me the above consequences were probably caused by me becoming ‘a little fearful about something’. !!
When I denied this, he said well, I expect you get a little anxious! (No, but I do get very angry when confronted by people like him!!
)
I denied it!
Well, he said, we don’t agree with Professor Pinching’s diagnosis. (ME) We overturned that a couple of years ago!!! (News to me! I was diagnosed by a number of doctors and consultants over 35 years) It was apparently over turned by the doctor from the ‘fatigue clinic’ where I haven’t even been yet, but he gave me a tilt table test where my BP, as I predicted, rose to 225/130 ish up on standing instead of falling to low levels as it always did before. Apparently, he wrote to my GP and said my BP was normal when on my feet (225/130 is normal?) and that I do not have ME. I didn't even discuss it with him.
I guess my official diagnosis is MUS, although he didn’t say this.
He then told me that if I really had had a physical illness for the last 35 years I would be dead by now !
He clearly had no respect for my experience or interpretation of my symptoms, my knowledge, or my BP problems (witnessed by a number of doctors) and the consequences or the doctors who have confirmed it.
Realising that my integrity, sanity and truthfulness were being attacked and dismissed, I began to defend my corner by launching into a discussion on the various research projects, but only got as far as mentioning Dr Charles S, and he became very angry and told me I mustn't listen to him and others like him. (Sorry Charles!)
I asked what can I do when my BP spikes so high and has horrible and long lasting and even permanent consequences? He shrugged his shoulders and told me, ‘Well if you’ve lived this long, you will possibly live a bit longer’.
He showed me a previous brain scan and indicated various areas of damage where my brain light up like little light bulbs. No idea what that means so will ignore that.
He then stuck out his hand to me, dismissing me. I took his hand, put my (apparently very red face) close to his and said: Good job I have made my will then doctor isn’t it!.............and walked out………..very, very angry and also scared for the future. I have no idea where I go from here.
When I was outside I was told a story and I have been given permission to write it here providing I don’t mention the town concerned.
A person with ME wrote to a local newspaper to complain about how badly she is being treated by the medical profession. The editor published it and asked for other readers to write in if they also had ME and were experiencing similar difficulties with the medical profession. Several letters were received that week.
The same week before the next copy was printed the editor came into the hospital for an appointment. The consultant had read the ME patient’s letter in the paper. He told the editor if he published any more letters from ME patients he would find in future that his treatment at the hospital would deteriorate. No more letters were published.
At the moment………..until I feel I can fight on……………………I despair.
Is this the result of the new MUS policy? I just don’t know. It might be just a continuation of the usual attitude but I was shocked to find how far they will take their ……… to be frank……………abuse of those of us with ME.
Still trying to lose my anger.
The moral of the tale is that it is completely pointless going to a doctor or hospital even if your problem is potential serious and unconnected to ME.