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I'm in the UK and was admitted to hospital recently with a suspected gallbladder infection and was kept in on oxygen after scans and tests revealed low sats and lung disease! One consultant told me that blood tests had revealed a rare immune disorder which can also affect the muscles. At home now and on 40 mg Prednisolone per day till I see a consultant again re evaluation and introduction of a new drug - presumably something to suppress the immune system?
I was asked how long I had been breathless or coughing and the answer was never! Ditto re muscle problems. Was just a bit tired when dog walking last summer. The consultant was positive and said they should be able to stop progression and maintain quality of life. Not holding my breath (or maybe I should).
While in hospital I missed my gallbladder consultation at another hospital. This was to arrange surgery as we do know it needs to come out. The problem is I am now in constant pain . My chest hurts and I have pain below the breastbone. Plus I have had neuropathic 'burns' with 'pin pricking' and itchy, sore skin. I think some of it is due to the gallbladderand some down to chest/nerve inflammation but for the moment, the doctors can't get a handle on it and I'm on Gabapentin, Amitriptyline, codeine and paracetamol to cover all bases. So far only the burning has stopped.
Has anyone had either neuropathic or ordinary pain along with a lung condition? If so I'm hoping the steroids will help when they kick in - but it's difficult knowing what symptom is down to what condition.. I hate being on steroids and other drugs and I just wondered if anyone had found any particular drug/therapy/lifestyle/diet helpful (or not). Trying to be informed. Not helped though by the discharging consultant who refused to give me the name again of the immune condition saying that all I needed to know (patronising much?) was that I had fibrosis/interstitial lung disease. It wasn't in the GP letter either.
All advice appreciated. Thanks.
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