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I haven't posted in awhile as there really hasn't been any progression with a diagnosis for my symptoms. (Previous posts detail my experiences)
I am currently seeing a specialist at one of the local cfs/me clinics as my GP wanted me to see a specialist before he made a diagnosis of cfs/me. She has stated that she feels it is too early to make this diagnosis as there are other things she would like to rule out first. She has been so good at looking at every possibility and acting on it.
Yesterday I attended a neurologist appointment that was made because of pain and odd sensations from nerve pain to tingling that I have been experiencing on my left hand side. This effects me from my left temple to my left foot. I get severe headache/migraine on the left side of my head with very heavy left arm and leg (Usually around the joints, hand and foot) which makes it difficult to use the limbs easily.
Anyway as soon as I walked into his office he said "You have been seen recently by the cfs/me specialist" to which I answered yes and gave a breif description of why I am seeing this specialist to which he replied "I have no time for this cfs/me thing, you just need to exercise and you will improve" "cfs/me is not real".
I was absolutely shocked at his rudeness but did have to laugh as I have seen others experiences and thought it was now my turn to experience this attitude.
I was quite rude back at this point and said that I was not there to discuss whether I have cfs/me or not but to get the issues with my left hand side looked in to.
At this point he said "Tell me what has been going on for you to be here today" so I started at the beginning, inner ear problems then eustachian tube problems to sinusitis followed by many cfs/me symptoms. To which he replied "You are decommissioned as you was laid up at the beginning with the ear issues etc and now you need to exercise and gradually increase then you will be fine, anxiety is holding me back and exercise will help".
I just smiled and said "Is there any point in me being here to see you as you seem to have decided this is a waste of your time" to which he said "Fine strip down to your boxers and jump on the bed" he done a brief neurological exam and said "you are fine, all reflexes react how they should and you are not weak" "You need to get this cfs/me out of your mind and get moving, don't get dragged in to this cfs/me business or your life will not improve".
I was horrified and just felt embarrassed as there was also a student in the room and he kept stating to his student how mad this cfs/me "thing" is.
I left in disbelief, this was so unprofessional and it made me feel so bad. I have had to laugh at the experience but I am pretty mad that I wasted 5 hours of my time to go here for this.
I have an MRI on the 1st of June then will be returning to see the cfs/me specialist who I imagine is not going to be too happy as she has nothing from this appointment that can help with answers to what is going on on my left side (Unless the MRI shows something)
What should I do as I really don't want to have this experience again and I worry she will want this appointment made again to investigate this issue.
I can't believe how rude these professionals can be regarding this considering all of the information available to state this is a very real issue and not all in the mind.
I just hope others here do not have an experience like mine.
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