Eileen - help needed please!!

Hi all

Well, PMR has faded into insignificance in my mind. I am feeling very worried and scared. My GP (the lady one) has suggested it might be bronchiectasis I've got.

We are due to go to France on Tuesday but I can't stop obsessively worrying, trying to analyse my condition over the months and looking it up on the internet! Can't think about packing etc.. and don't see the point in going as I can't stop worying for a minute!

I have an appointment with chest specialist on 2nd Sep but then will have to wait even longer for tests I suppose.

The ENT man saw nothing wrong although he did admit any inflammation could have been masked by the 30mg steroids for 5 days.

Sorry to be so miserable - am getting myself into a hysterical state and don't know how to stop. My family keep telling me not to worry until I have the diagnosis and then we will deal with it but it's easier said than done.

Beev

Beev

What a worry for you to be still going through all the horrid symptoms and still with no positive diagnosis, not helped by your Dr suggesting something that has scared you.

If the ENT man couldn't see anything serious, then maybe you do not need to worry.

I can't remember whether you've had a CT scan with contrast or not which would probably show up everything inside the lungs/tubes and give you some reassurance.

Have you tried swimming to see if that would help at least with the symptoms? I just say this because when our son was very young, in fact from babyhood, he suffered a series of chest infections and was plied with antibiotics - one of the recommendations was that we should take him swimming as swimming opens up the airways and is excellent for the lungs - just a thought for you, Beev.

I do hope you get to France for your holiday not least because being in different surroundings should help to take your mind off things.

MrsO :hug:

Beev

I wonder why your (lady) GP has made an appointment for 2 Sept with a chest specialist? If she visited the NHS website, she would find the following:-

[color=red:4e2d920e39]

[color=red ] [b:4e2d920e39]If your GP suspects that[[/color:4e2d920e39]/b] you have bronchiectasis, [color=black:4e2d920e39]they may ask about your history of respiratory (breathing) problems or childhood diseases. This is to find out whether there is anything in your past that might have damaged your bronchial tubes (the branching airways that carry air in and out of your lungs).

You will then be referred for lung and sputum (phlegm) tests to confirm if you have bronchiectasis and, if so, to find out how it has affected your lungs.[/color:4e2d920e39]

HRCT scan

The use of high-resolution computed tomography (HRCT) scans to detect bronchiectasis is now widespread, and some doctors regard them as the best diagnosis method. During a HRCT scan, a series of highly sensitive X-rays will be taken of your chest at slightly different angles, and a computer will be used to put all the images together. This produces a very detailed picture of the inside of your body.

[b]From this picture, your GP will be able to detect the severity of[ the bronchiectasis, the pattern and distribution [/b:4e2d920e39]of it in your lungs, and also any other infections that you may have as a result of the condition.

Bronchiectasis can be identified by looking at your bronchi (the small tubes that carry air in and out of your lungs). Instead of tapering (getting narrower) as they go further into your lungs, the bronchi are dilated (become wider).

The width of the bronchi is compared to the width of your pulmonary arteries (the blood vessels that carry blood from your heart to your lungs). This provides a standard for how wide your bronchi should be. If the bronchi are wider than your pulmonary arteries, this usually confirms that you have bronchiectasis. [/color][/color]

Maybe I am daft, but why has she not ordered a HRCT scan, it can be done from primary care.

I would ask the question.

But I would still go to France. You will have your E111 and the French hospitals are OK.

Mrs O

Thanks for the reply. No I haven't had a CT scan. The ENT man was just the wrong consultant I think! It seems the problem is in the lungs. I can't believe I've lurched in such a short time from my original GP (who referred me to the ENT spec after I insisted something be done) who was ignoring my symptoms and as good as telling me I was wasting his time to this anxiety and feeling I have a death sentence!

I am tempted to get a private app but it would mean not going to France.

Beev

Mrs K

Thanks. Yes I wonder. But I am seeing her on Tuesdy morning before we go so no time then to get that scan. I am in such a state I dont know if there's any point in going to France - feel like I've been given a death sentence.

Beev

Hi Beev

Is there any way your holiday could be postponed a until after your appointments If you are going to worry so much I wouldnt have thought it will do your health any good at all

Drs and Hospitals are fine in France but it is all peace of mind isnt it

I am so sorry you have all this worry but the sooner you know what its all about the better you can sort it all out and get the correct treatment Perhaps you should try and make an emergengy appointment with your GP tomorrow to see what she thinks so you can decide about your holiday

Very best wishes

Mrs G

Hi Mrs G

Yes - I'm not sure if we could get a later ferry crossing. My GP is part-time and I have an app for Tues morning before we go.

I have found a specialist nearby who does private apps and it says he can be seen within a week - but think I would have to pay for the CT scan too.

Trouble is - if they do diagnose that, I still won't have peace of mind!!

I keep hoping my original GP was right and there's an innocuous cause to all this. After all, he certainly wasn't concerned!!

I need to stop myself from panicking - am getting myself hysterical.

Beev

Right - positives first - you now have someone who is taking it seriously, unlike your GP. You wouldn't get the scan done before the French trip anyway - there is a lag time as they are very complex and can only be done in certain hospitals who have the gear and the appointments are made in advance. What MrsK means is that the GP can order it themselves by direct access so doesn't actually NEED to send you to a consultant chest person first - it could be requested so it has been done before you see them and they have much more evidence in front of them when you arrive for the appointment.

It's not a death sentence so calm down - it needs proper management and should have been looked for earlier but you are no more likely to peg out this week than last week :wink: so go and enjoy your French holiday before starting on the tests and stuff. Even the condemned man ate a hearty last meal - so, since you are not yet condemned, you can have an even better time and relax and enjoy yourself somewhere nice - where are you going?

I'm not going to tell porkies and say it won't make any difference to you because it is likely to do so longterm. And I haven't yet done the reading although I am aware of a lot about it - my husband probably has it as a result of the radiotherapy and stuff from his cancer. He is in the USA at present, with a bad chest because of the air-con as usual! However - unless you have been told not to, go away. It's only suspicion so far and not fully confirmed. And yes - I know what I'm telling you is easier said than done but there is no point moping and panicking until the beginning of September because by then you'll be mentally not very good as well as physically not in top form.

Open a nice bottle of wine and sit on the sofa and have a cuddle and a cry on someone's shoulder - then pack your case. 8) I would be there helping carry it if I had half a chance,

lots of hugs,

Eileen

Eileen

Thanks again for the good sense. I will ask about the scan being sorted when I go on Tuesday. My son (the youngest one - he is more mature than me) - has been telling me that my anxiety is probably making my symptoms worse. My first episode of breathing probs 2 weeks ago was the night after my GP had been so rude to me and I wondered if it was the doubled dose of Omeprazole, but now I wonder if it was anxiety caused by him!

I am still hoping I haven't got Bronch as I actually have no real cough - only a deliberate one when I detect mucus. I have also had no chest problems in my life before. The quantity of mucus is much less than last week maybe because I am using a steroid inhaler twice a day now.

Ah well, you do talk sense Eileen - I will do my best to be sensible (not a strength).

We are taking the caravan to the Dordogne by the way. At least if I have a problem, we speak the language!

Many thanks

Beev

Hi Beev,

I really hope that you get away for you holiday in the Dordogne and that you can realax and enjoy it 8) .

You may well find that a warmer and drier climate will help to ease your chest problems, and if not, you can try to obliterate them with cheap wine :wink: :lol:

I worked in Paris many moons ago, and the hospital care was very efficient when I needed it, and far quicker attention to my needs than I would have got at home......so bon vacances et bon chance .

Love,

Pauline.

Hi all

Well, I've been to France and am now back. The first week was quite tricky and we nearly came back because I was having breathing problems again.

I ended up going to see a French doc who told me I had finally found \"a sympathetic and competent doctor!\" - a Frenchman who loves hinself - there's a first!

He gave me antihistamines and expectorant meds as he thought there was a good chance it was due to allergy. I speak French so there was no prob telling him the history. Well, after 48 hours it was dramatically better and now is a whole lot better. However, this coincided with my doubled up dose of Omeprazole reaching the 4 week stage and of course I was also taking an asthma preventer inhaler twice a day and a steroid nasal spray and the effect of those must have been building up. So its hard to know exactly what was doing what.

I got home to find that the consultant has organised a high resolution CT scan - for tomorrow and asked the surgery to organise for me to have a number of blood tests before I see her. Needless to say, they hadn't tried to contact me! I've booked that for Friday and have now stopped the antihistamine for a few days as that might influence some of the tests.

I am feeling quite scared as to the outcome of all this but at least something is being done at last.

The weather was mainly good in the Dordogne but we didn't like the food much - we then spent 4 nights on the Brittany coast up near Roscoff and really enjoyed our crepes and sea-food.

I haven't had chance to read all your posts yet - will do next. Hope you are all going well.

I see you can get bronchiectasis (if it turns out to be that) as part of various auto-immune diseases such as rheumatoid arthritis. Do any of you know of PMR being included in that category with lung involvement??

Beev

Glad you had a reasonable holiday especially after the panic you had beforehand! What was wrong with Dordogne food? I'm a seafood person too but not crepes unless they are pure buckwheat ones - yummy and wheat-free!

There is not a lot of difference between LORA and PMR in a lot of ways so I imagine there is a certain communality there as well :roll: Bronchiectasis can just happen as well so who knows - and I bet they won't tell either :roll:

Hope your high res CT went well. Certainly sounds as if things are finally moving. Once they come up with an answer I'd really rather enjoy doing a Spike Milligan with your GP - \"I told you I was ill\" :wink:

Eileen

Hi Eileen

Yes but I'd rather be able to agree with him that there is nothing wrong!!!!

Re food in Dordogne - the foie gras was ok but nothing to write home about. All meat we had, in restaurants or on bbq, was tough as leather. Give me langoustines and crab any day! We had to eat so much so quickly while in Brittany, to get the list of things to eat done!!

I had the scan today but they werent able to tell me anything. Bloods tomorrow for total IgE level, full blood count, immunoglobulin profile, RAST to aspergillus. Will get ESR done at same time. I'm down to av of 1mg a day now (2.5, 0, 2.5, 0, 0) - can I average it over 5 days like that??

LORA?? What does the LO stand for??

Beev

Well yes - definitely preferably nothing but I think we have to admit there is SOMETHING going on that needs sorted out don't we? Hope the French guy and his allergies has some foundation to it.

LORA = Late Onset Rheumatoid Arthritis - as opposed to the juvenile variety which is foul. LORA involves joints but there is not usually the same degree of destruction of the joint tissue so it is slightly preferable - plus you have had a life before it. It can be very similar to PMR in presentation and I think it is a case of PMR doesn't morph into it but they just weren't distinguished at the outset.

Never did get overwrought about foie gras and to say that French meat is variable is to be kind about it :roll: Of course, our neighbour here is of the opinion that meat in July and August is not worth having as the turnover is too high with all the tourists and it doesn't get hung long enough to mature.

We found a few gems in the area north of Monaco and around Nice-ish in June. One was posh but the set meal for the day was only 27 euros - can't remember what the starter was but it was a nice salady thing, the main course was rabbit and gorgeous (husband rejected that :roll: ) and the desserts yummy. And there were olives and nibbles included whilst waiting. Wine was pricey whatever you had but also high quality. The others were just roadside or village places used by locals but the sort of place you have to think are long gone in many places in France now. Sospel (north of Monaco) was delightful if overrun with walkers but had loads of eating places of all sorts. It has a campsite but you need to have a strong nerve to take a caravan up there from Monaco (everyone going to work/home - scary, David screamed twice as I drove down to Monaco) as there are hairpins on ALL approaches.

See no reason why you can't average the dose if you feel OK on it - David has to do that with his warfarin - even more complex here as it comes in 5mg or nothing! Get 2mg and 1mg in the UK which is much easier to deal with.

I need a bit more France I think - but in lower season!

Eileen

Hi Eileen

In the past, we always used to find good restaurants in France - and really cheap. I think their cuisine has gone downhill with the advent of fast food and of course its always worse in touristy places in summer. Prices went up enormously with the Euro - our French friends agree with that. We still get great food when we stay with French friends - and cheaper!!

Even in Brittany we investigate carefully to make sure the crepes have been made there and for restaurants in general we watch where the locals go.

Don't fancy towing the caravan around hairpins thanks!

All this has made me realise that time is so important - more than money - whatever my diagnosis, it makes you realise that you never know what is around the corner. I am tempted to retire sooner rather than later.I will be 60 in December so could go at Xmas but hadnt intended stopping for a couple of years.

My PMR has been quite mild compared to many stories on here - I do wonder if its the correct diagnosis but dont think Ive got RA.

Is there anything that links PMR with lung problems and possibly acid reflux?? Could an allergy cause acid reflux?? Did you sort out your own suspicions re GCA involving pulmonary artery?

Beev