FeelingGreatNot in diagnostic limboland-advice please!

[FeelingGreatNot]

I’ve asked for advice here before about a possible EGPA diagnosis (eosinophilia, lung infiltrates(eosinophillic pneumonia), asthma, severe sinus polyposis, fatigue) and everyone was very helpful. Following advice I got a referral to the Kellgren Centre Manchester which I waited 4 months for, during which I developed new symptoms in my legs-buzzing, muscle pain, shooting pain, joint pain (hands and feet, knees) twitching toes and fasciculation in muscles esp feet.

Unfortunately I saw a consultant who wasn’t Dr Bruce or Dr Parker-they had been recommended as vasculitis experts-and have just received the clinic letter. She has listed all my symptoms although with many errors including mixing up lung infiltrates with fluid in the ear?! but states I am well-I may look well but don’t feel it. Her focus is on me being double jointed which I have never found to be an issue. I’m not very bendy-could never touch toes, can’t touch thumb to forearm...I ran off and on road until last summer and never had sprains or dislocations. Looking online her speciality is EDS. My children are double jointed-I thought mainly from their dad!

Reassuringly bloods are currently normal-except ANA 1:100.in the past I’ve had eos about 5.2 and raised CRP. She says in the letter she’d get hold of old scans/bloods/xrays, and then decide on management. Would see me sooner if I was having a flare-im not really flaring, just getting worse from the leg point of view. Previously I had ground glass appearance on a CT chest.

With this letter I received another referral by her to a chest physician in Manchester (Wythenshawe) called Dr Niven which basically says ‘this lady thinks she has EGPA but bloods normal looks well’. I don’t know why I have got that referral as I live 3 hours away and have an asthma consultant locally and am well controlled on Relvar/Incruse. Is he an EGPA/vasculitis specialist-does anyone know?

Sorry it’s long story. I know I’m not very unwell-still able to get around-and pleased bloods ok just now, but still feel that ?EGPA is a valid question given my story. The consultant seemed to think I can’t have EGPA without being more unwell-no steroids for a year-and no classic vasculitis rash. I do get spontaneous bruises and teeny ulcer spots. I have face/sinus, chest, leg, hand pain, fatigue, red hot knees and feet, esp in evening.

So now I’m considering asking to see Dr Parker or Bruce on follow up-but would only be a shorter appointment I imagine or starting again elsewhere? I have medical family in Glasgow-I see a Neil Basu may have a vasculitis clinic? Has anyone seen him or know him? Feeling lost.

[FeelingGreatNot]

Forgot to say the respiratory referral letter was dated one month later than the original although both arrived together. I wondered if she changed her view after seeing my previous letters, bloods and scans? Even still it is strange not to inform me of the reason for it.

[amms43 in reply to FeelingGreatNot]

After many years of illness I conclude that there are two sorts of doctors; firstly those whose reports simply list the symptoms which you have told them about and report the test results. Secondly the rare gems who listen carefully to what you say, assess your symptoms, take into account HOW YOU FEEL, any test results and then TRY to diagnose your illness and then TRY TO MAKE YOU BETTER.

[Mooka]

I’m so sorry you are going through this. Unfortunately it’s not unusual for it to take a long time and to be pushed from pillar to post trying to get a diagnosis. Most of us with Vasculitis look well! I have seen Neil Basu at the Vasculitis seminar a few years ago. He gave a really interesting talk on their research into fatigue. I can remember thinking I wouldn’t mind if he was my doctor he seemed so nice and knowledgeable. Have you spoken to your GP about sei h the wrong consultant? Maybe he/she could help. Good luck it’s so hard to be pushy when you feel so ill.

[FeelingGreatNot]

Thank you both for replying. It feels better to know others have experienced similar. I got an appointment today for nerve studies next week which is good. Also found Dr Niven online who is a severe asthma specialist so may well see EGPA.