My Gp Is Not Concerned About My Lungs Or Fainting

[TCP]

Does anyone else have issues with their doctor regarding syncope and breathing restrictions? I was recently diagnosed with three areas of one lung showing collapse and also my blackouts have got worse. I wonder if I have to fall, hurt myself and get hospitalised before anyone takes any notice? I thought this 'new' GP was much better than the others I have had but this recent visit has mad me so angry.

Has anyone else found it hard to illicit a response from their doctor?

Thanks

Trish

[sue1234]

Oh definitely! This may be a dumb question, but have you been to a pulmonologist about your lung? I'm assuming you have. This may be all out of the realm of the GP, and that may be why he's acting uninterested. Sometimes I think they act that way when they are trying to get a patient to leave and go on to another doctor.

[Katybug]

I agree with sue that this sounds like an issue that warrants a pulmonologist. I have had this issue with my GP but he was at least open to me seeing specialists regarding my suspicions even though he believed at the time that POTS and EDS were adolescent issues and knew nothing about MCAS. He has since educated himself after getting the notes and diagnoses from the specialists.

[dkd]

I have been totally let down by my GP. So much so, that I do not want to go back to her so I'm kind of without one right now. I wanted her to look at 'the whole picture' and tie everything together, but her response was to just give me an anti-depressant. I think she can only handle things like : diabetes, thyroid issues, high blood pressure--you know the "easy stuff" (not to offend anyone that has one of these issues, but they are mostly more straight forward) --something they can give a pill and it'll get better. For chronic unknown stuff like we have, they don't know what to do. Mine did do a pulmonary test at her office, but then she sent me to a pulmonologist. That's probably your best option right now. Best wishes!!

[TCP]

Thanks everyone. It is frustrating isn't it?

I had been having checks for my sleeping issues and went to see a respiratory doctor at the hospital. I also asked about my restricted breathing and he sent me for a spirometry test, x-ray and CT scan. All came back showing changes, decrease in lung volume and partially collapsed lung. I wasn't invited back to the respiratory doctor for results, reasons or treatment. My GP said not a lot could be done. I have since found out it can be a symptom of EDS, which I think I may have going on the signs I have always had.

My GP is like most I have seen over the last 20+ years, have been clueless regarding the ME/CFS, severe neuropathy and now POTS/dysautonomia and EDS. I diagnosed myself with ME/CFS and suggested I had it to the doctor and she referred me to a Prof of neurology. It took 8 years to get there. It's 30 years this year since the ME started after EBV=Glandular Fever. I know I won't get referred for the POTS or EDS diagnosis by my GP on the NHS, so I'll have to save to get to a specialist in London. I must say I am looking forward to getting dx after years of misery and seeing what the GP makes of that. It won't be for a while yet but will be worth it!

I would like to say 'Thank you!' to this website and forum and to all the contributors, without you many of us would be floundering in another ten years. I've learned so much from all of you.

TCP

[spinner]

I hate to say this, but there may be truth to the idea that you have to full faint out before he takes notice. Doctors hear extreme stuff ALL DAY. They get immune from real issues. To them they are only symptoms, to be proven by tests. If no positive test, no concern. WE are our own physicians in the sense that nobody knows how we feel like we do.

[TCP]

I do faint and collapse fully and I've told her this. I'm worried that I'll hurt myself. Even when blood tests come back abnormal and scans and x-rays show strange anomalies, there isn't much reaction.

I think we do self-diagnose as we want answers as to what's going on. It's a real struggle but I'm not giving up.