Conflicting diagnosis

Hi All,

Hope you are all as well as can be.

I have been attending a difficult asthma clinic in recent months and they diagnosed bronchiectasis and severe/difficult asthma (which used to be well controlled). They also referred me to an immunology clinic for further investigation.

The Immunology clinic has diagnosed a specific antibody defficiency (which explains a lot!) and yesterday, I received a letter with their results. On that letter was also some diagnosis. The doctor said on the letter that I didn't have bronchiectasis!

Would the diagnosis of an Immunologist override that of a respiratory consultant? I doubt it but it is still worrying - don't they read each other's notes?

Given that I am still being investigated for all the things that have happened to me over the last 7 months, conflicts like this are very annoying.

Has anyone else experienced this sort of thing?

cheers,

James.

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Hi James, I wouldn't stress about it too much - the immunologist is only treating your immunological deficiency, it's your resp consultant that will manage your bronchiectasis. It may have even been written in error, they are human

Are you going to be starting infusions for your antibody deficiency?

Lynda

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Hi Lynda,

Thanks for that - I have pretty much dismissed it, it's just having had so many A&E and hospital visits, a doctor would say one thing, even if it was wrong, and suddenly it's gospel!.

It's weird, before I got ill, I could cope with small things like this. Now, the slightest complication and my whole world collapses. One of my friends at work calls it 'Headspace'. He says we have a certain capacity for stress, when that space is used up everything else is blown out of proportion.

I'm still waiting for the clinic visit to discuss further tests/treatment. That, unfortunately is a month away.

I have read up on ivig a lot as it seems that would be the direction they would go in (and after speaking to my GP about it). It appears to be life changing - can't wait if I'm honest. I picked up a repeat prescription last night - 13 items in two carrier bags!

James.

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Hi James - I know what its like when you are at the investigation/diagnosis point and the slightest thing freaks you out. The repeat prescription thing is fun isn't it LOL, I have 14 things on prescription, plus I used to have to collect eight boxes (52 cartons) of enteral feed, and had to take a sack barrow to the dispensary, it was very embarrassing!

I know some folk at Papworth who have the IG infusions and they are indeed life changing so fingers crossed thats the route they will take for you if you have had a deficiency diagnosed.

Hope you have an NHS prepayment certificate for those prescriptions...

What support have you had re the bronchiectasis, have you seen a respiratory physio re chest clearance? Hope you're feeling reasonably well at the moment

Lynda

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Yes, I see a physio regularly and am on all sorts of medication for the bronch and asthma. I also think I have something else wrong as I have lots of other unrelated symtoms - high blood pressure despite lots of meds, low potassium despite lots of supplements, unexplained acne, and tiredness - that's being investigated as well.

Thankfully I haven't had to take a sack barrow to the chemist yet but it's getting close! I did get some funny looks last night though!

I have had a pre-payment cert for many years - I think it saves me around £500-£600 a year, couldn't recommend it more highly (well, apart from free prescriptions!)

I am feeling pretty rough at the moment - they changed my antibiotic I have every day from a macrolide to penicillin and it's playing havoc with my system at the moment and I have a bug as well (whinge, whinge, moan, moan!) How are you?

I do love this site, whenever I write on here, I feel so much better - must do it more!

James.

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Hi James,

I have deficiency in IGg 1 2 and 4. So I have replacement treatment, I have it subcutaneous rather than IV so can do it at hm twice a week, it has been so much easier and I feel much better in myself. I don't have bronchiectasis but had a fair few infections.

If offered try s/c.

Good luck George xx

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Hi James,

I have had literally exactly the same thing happen to me - diagnosed with bronchiectasis and brittle asthma and the immunologist has diagnosed me with a specific antibody deficiency and there were then questions about whether I really had bronchiectasis. It might well be that the immunologist has just made a mistake, and I would always take the words of a resp person much more seriously, especially once they've seen your chest CT. I don't know if this helps, but I have been told there is sometimes there is a question about whether some of the CT changes might resolve if your asthma is better treated (i.e. the asthma is causing the bronchiectasis, rather than two independent diseases). Obviously, you still get treated for both and if they can treat the immunodeficiency, hopefully the infections will be less frequent. Anyway, I'd always defer to the resp person for chest diagnoses! I'm just starting IV IG, which I'm really hoping will help.

I sympathise with the huge bags of drugs...I have to do it in stages because I can't carry them all on my own!

Feel free to PM me if you'd like to chat.