- Messages
- 66
- Location
- Cornwall, UK.
This is a letter that I received recently from a consultant and it is negative and generally unhelpful any suggestions??
Diagnosis / indication for referral:
Chronic Fatigue Syndrome/ME.
Breathlessness and burning chest discomfort.
Management Plan:
I will refer Mr XXX to the Respiratory Medicine clinic for further assessment.
Review indication and interval:
Routine follow-up appointment not arranged for this clinic.
I met Mr XXX in the outpatient clinic for the first time today. This appointment was arranged by Dr XXX , Specialist Occupational Therapist, following her assessment of MR XXX in November 2017. Mr XXX had some questions about various aspects of his symptoms and illness, and we have discussed these today.
Firstly, Mr XXX was keen to know whether I could arrange for him to have a MRI scan of his brain stem: he has read research published by Dr Byron Hyde, which suggests that specialised scans of the brain stem can show abnormalities diagnostic of CFS/ME. However, this is not yet an approach that is routinely accepted or undertaken in UK practice, and I am not sure whether or not the specific scanning modalities used by Dr Byron Hyde are available in Cornwall. In addition, there is no targeted treatment currently available for brain stem dysfunction in CFS/ME, so we have agreed that we will not proceed further with this for the time-being. (SHE AGREED).
Mr XXX is also keen to have further investigation of his lungs. His CFS/ME appears to have been triggered by a viral infection around 8 years ago: his initial symptoms included, chest pain, cough and breathlessness. He has never made a full recovery from this illness, and describes on going problems with an extreme burning sensation in the upper part of both lungs, which becomes more severe if he is exposed to irritants such as environmental pollutants or some medications. He tells me that he was investigated in the London Chest Hospital 28 years ago, when he had symptoms of intractable asthma. He was told that lung scans performed at that time showed a severe scarring of his lungs and a rare developmental abnormality of his heart.
Mr XXX asthma symptoms have subsequently improved, but as well as the breathlessness and burning chest pain he experiences needle like pains in both the front and back of his chest, which are not pleuritic, and intermittent wheezing, particularly when lying supine. He also describes palpitations, and I note that he was investigated in the Chest Pain clinic in 2011, when an exercise tolerance test was negative. Mr xxx has been a smoker for around 40 years and currently smokes around 15 roll-ups per day. He used to work for a building company and has been exposed to asbestos and coal dust in the past. He was keen to know whether a MRI scan or PET scan of his lungs would be indicated to further investigate his symptoms. His most recent chest x-ray was in 2014: he is not keen to have further x-rays or CT scanning, as he is sensitive to the effects of radiation. Unfortunately, I was unable to advise him whether or not these investigations would be appropriate or helpful, and so I have agreed to refer him to the Respiratory Medicine clinic for their opinion.
Mr xxx is also concerned that he may have hepatotoxicity resulting from exposure to environmental chemicals or medications in the past. I was able to reassure him that his most recent blood tests did not show a liver abnormality, and we reviewed the results of a previous liver ultrasound scan which did not identify any problems with his liver, but showed a thick walled gallbladder, with no gallstones. Mr xxx is satisfied that his symptoms are not related to his gallbladder and he has previously declined a cholecystectomy.
I have not arranged a routine review appointment for Mr xxx in this clinic for the time-being.
