Anyone on ILX have a decent knowledge of medicine? Or a good brain?

Few physicians like to admit their inability to diagnose unusual ailments. Yours is clearly being treated as a group of symptoms, each of which requires a specialist in the area where the symptoms appear. This is bollocks, because each specialist is going to concentrate only upon the symptoms that appear within their own speciality, missing the root cause and therefore failing to restore your health.

The best they will be able to do is to manage some of the symptoms, as with the migraine medicine, which does a poorish job on one aspect of your condition, but is marginally better than nothing.

Try to convince your doctors that you need to be sent to a diagnostic specialist, a physician who does nothing but diagnose offbeat diseases that elude other medical doctors. If this proves too radical for your physicians to agree to, be prepared to suffer a long series of misdiagnoses until some day you might get lucky and stumble onto a doctor who can assemble the jigsaw puzzle your symptoms present and give you a definitive answer for the question "what's wrong with me, doc?". Good luck.

Thanks, you're absolutely right. Paragraph one is exactly the problem. Is there such a thing as a diagnostic specialist?

I also have thought about getting as much info about my condition as possible myself and doing my own homework or at least being able to say "I know what they tried to do here, here and here" etc.

I live in the USA, so matters may stand differently where you are, but I have consulted a diagnostic specialist once, for my daughter, long ago, so I do know such creatures exist. They are rarities.

The ability to diagnose oddball diseases is a gift as well as a discipline. The fact that you are not breaking out in suppurating pus-filled boils will probably reduce your chances of seeing such a person within six months, if at all. But, nothing ventured...

ronan, a very good friend of mine went/is still kind of going through a situation similar to yours. she was having 'women-problem' stuff that no doctors or specialists could seem to give her an accurate diagnosis of, or any kind of solution/alleviation to. she was referred to an endocrinolgoist, who proceeded to tell her (after a battery of tests):

MAYBE THIS IS JUST GOD'S PLAN FOR YOU.

when she told me this (and he didn't just stop here, he gave her a big god-rant), i was utterly disgusted. a person who can't work or function normally for the better part of two years, who is in enormous amounts of pain, who faces infertility, who had to go on strict liquid diets continuously, who couldn't party and socialise because she was always ill - she's goes to a so-called PROFESSIONAL in the MEDICAL field and gets this shit thrown in her face. and like you, she also had to deal with a lot of doubters, people telling her it was in her head, or that her worrying would only worsen it. i'm sure stress does worsen medical conditions, but people offering bullshit advice also causes stress.

all i can think to say is this: you're your own best doctor. if you're seeing a ton of different specialists, all giving you bits of info and diagnoses, no one else is going to really bother trying to tie the threads together except you. and that is probably the thing that will get you some kind of answer/s. aimiless's advice about seeing a diagnostic specialist is also good.

Is there such a thing as a diagnostic specialist?

http://eli.wz.cz/files/HouseLap1.jpg

Oh you meant in real life, I suppose?

The mail I sent you was inspired by a real life example as well, but it wasn't as chronic as your symptoms and could just as well be irrelevant. The point of it feels logical though: if there's nothing wrong with your stomach and lungs, but they do cause problems, then maybe they're reacting to something else that irritates both of them?

Say (completely unmedical theoretical example) there's a cyst, very slowly (for years already!) growing in between your lung and stomach. On the diaphragm, for example. Or on/in the gall or liver, but not in a region of those organs that would cause direct problems with either one (so there's nothing wrong with your blood or urine that would attract the attention to your liver). Cyst irritates stomach, stomach produces more acid, stomach examination reveals a perfectly OK stomach. Cyst irritates lungs, lungs produce more mucus, lung examination reveals perfectly OK lungs. Mucus causes breathing problems, breathing problems cause the headaches, sinus & brain examination reveals nothing directly wrong there either.

Have that whole region scanned for indirect things that could cause your otherwise healthy stomach and lungs to react in the way they do?

Just trying to help think out of the box.

my mom used to have breathing problems for years, the cause of which turned out to be a combination of mould allergy and poisonous wood preservatives in her room. her problems also got worse in winter because she would spent more time indoors. she only found this out when our old house was appraised and an environmental specialist did some testing for asbestos etc. so maybe its something like that. i dont think health insurance covers that sort of expertise though.

i wish i had some kind of answer, ronan. that said: i've taken the liberty of passing this on to a couple of people who might have a better idea about where you go from here. i'll let you know (by e-mail) what they say.

in the mean time: could you ask for a second (GP's) opinion? my own experience of GPs is limited, but i went to one once who was the biggest dick in glasgow, and basically wouldn't have had a fucking clue what was wrong with me had i not said: "er, i think it's this, and you need to prescribe me that." it worked :/

My sister had a persistent cough, for several years, that nothing seemed to touch. One dr decided she was allergic to her birds, so the birds found other homes. But the cough continued. Finally, she went to a dr who recognized the problem was reflux (also called GERD sometimes). She was on some strong antacid things for over 6 months, slept with the head of the bed elevated, etc and finally stopped coughing. So, I have no problem imagining reflux could be affecting your breathing.

Something that can help a diagnostician (or yourself even) is keeping a basic journal - what you ate, what you drank, how you slept, etc, and how you feel (good and bad). Patterns might turn up.

I'd also recommend you try a neti pot - it's a simple thing that has gotten me through two bad allergy seasons and a winter cold with much fewer problems than I normally have. The mechanical act of rinsing gunk out of your nose/sinuses with warm saline has a lot of value w/r/t pollen/mold and overactive mucous membranes. One of those (I don't know what the technical name is) things you blow into to measure your lung capacity can be useful - I have asthma which makes it hard to get all the air out of my lungs and using that thing gives me the visual feedback I need to push all the air out, and also possibly makes my breathing more efficient. Playing a brass instrument probably helps too, now that I think of it.

re: headaches - my daughter was experiencing horrendous migraines complete w/ vomiting until she passed out. A battery of tests found nothing really. She finally had her impacted wisdom teeth out and magically had no more sick headaches.

Our bodies are complex interconnected systems, no doubt about it. Weird things like referred pain, symptoms that seem completely unrelated to the cause, and bizarre intermittent and nonrepeatable malfunctions all seem to be part of the deal. I hope it gets sorted out for you soon.

do you drink coffee and does it help or make the problem worse?

Coffee can act as a short term respiratory stimulant but if the cause is gastrointestinal related it'll probably make things worse

the journal thing is a good idea, especially make sure you note down any alcohol, cigarettes, dairy products etc, and the time of day things seem the worst.

i'm actually reluctant to recommend such a simple, everyday cure to your problems, Ronan. but i had acid reflux for years- without the additional breathing problems and migranes you describe - but mine were and continue to be cured by taking cider vinegar mixed with honey whenever i get the symptoms. obviously i'm not comparing the discomfort i had to the difficulties you have encountered but i detailed the steps i took to cure mine here:

heartburn

and if you search "GERD apple cider" on google you will find that a lot of people found the cure as effective as i did.

when i say "cure" there i mean "remedy".

the reason i'm reluctant to suggest it is because your problems are obviously much more severe than the discomfort i encountered.

Wish I had some amazing Facts for you Ronan, but I don't, so I'm just gonna say I'm proud you've kept on trucking through this and good luck. I hope this is all figured out really soon.

A friend of mine went through a similar thing a while ago: couple of years of going through different specialists to find out what was wrong with her. They did eventually find it out and she got better (can't remember what the final diagnosis was though), I hope you will too.

thanks everyone...like I say I am in an action mode rather than a depressed spaced out mode which can only be a good thing. starting a new job for a while tomorrow and I hate having to worry about health.

my mum is a biochemist ronan, i'm gonna ask her for advice on this.

Good luck Ro and I hope you do nail this on the head - its awful to suffer long term health issues.

The part mentioned above about poisonous/irritant stuff in your home really seems worthwhile to consider (you may of course have done this already) -- and can also be extended to workplace(s), general residential area etc. Did the problems appear after a change in any of these things, or do they seem independent from any such changes? Have you been away for extended periods of time since the onset, and did it make any difference?

OK I probably sound like I'm gonna go all 19th century now and recommend going to an Alpine Sanatorium to Take Waters or something, so I'll just say good luck -- hope you find out what's the trouble.

Hello Ronan

Has your GP ever considered the possibility that you might have COPD? So many of the symptoms you have listed above seem to fit with this, that I'm sure he has done - have you ever been prescribed bronchodilators (i.e. a ventolin inhaler), or oxygen to use?

My limited knowledge of COPD comes from being a long term asthma sufferer - my doctor's surgery worked long and hard to come up with a combination of therapies to get it under the best possible control, and investigations for COPD formed part of the tests they did on me. It was explained to me by my GP thusly : if you have a history of breathing problems, there will be inevitable damage to your lungs ..... when the little tiny air sacs (called alveoli) in your lungs are deprived of sufficient oxygen for long periods of time, they become flattened and lose their elasticity, and are less efficient. It's a bit like walking on frosty grass, and your shoes leaving a mark where they've flattened/snapped the grass blades. This means your lungs are having to work harder to get the oxygen in, and this hard work narrows the airways which also results in them producing mucus, making it even harder to breathe. The reduced oxygen in your bloodstream makes you very tired, and gives you dizzy spells and headaches.

Damage to the air sacs doesn't show up particularly well on an x-ray, either. Doctors do a simple breathing test (called spirometry) to measure your lung function - it's just breathing into a special machine, and it works out whether your airways have narrowed.

COPD is worse in winter, and causes anxiety attacks too. The most common cause of it is smoking/having smoked, but pollution and allergies can trigger it too. It can also be inherited.

It might be worth asking your GP for perhaps a short course of steroids tablets (which often help if you are having a lot of trouble breathing), some Ventolin (if you haven't already had it), possibly having a nebuliser to keep at home to use on really bad days, and asking for a referral to the Chest Clinic of your local hospital for further tests, and to see whether they run a pulmonary rehabilitation course where they can teach you breathing techniques to help keep your airways open without the need for medication.

I hope you find some answers soon, as these health problems must be so debilitating for you. Best wishes :)

Thanks for posting this, Ronan. Over the past year I've been seeing my GP about headaches and breathing difficulties (and at first about a persistent cough - an X-ray showed everything was fine there). He's prescribed tablets to reduce the acid in my stomach (which didn't seem to make sense because I'd never mentioned my stomach to him!) and referred me (now twice) to a migraine clinic about the headaches. I thought I might have sleep apnea too after a friend who has it described the symptoms, but the doc doesn't seem to think it's that. I'll be keeping an eye on this thread to see what else people are saying.

Like I say, thanks for posting. I hadn't spoken to anyone who had the same collection of symptoms until now.

(Well, a similar collection of symptoms.)

Ronan, why not try a little health tourism? If the Irish system is not coming up with the answers you could try in the UK or another EU country. As good as the Irish system is the UK is a bigger pond and you may get lucky in finding the right doc.

Zoe, good to hear someone else is having similar problems, obviously not "good" but you know what I mean. Did the reflux tabs help you?

CJ thanks for that idea. I have had numerous peak flow tests (is this same as a spirometry?) and have had a few doses of steroids. These made my headaches worse and didn't affect me really. I also had an asthma medicine to take at night, the name of which escapes me, it was a sleek and wonderful name with "air" thrown in there somewhere. Again, didn't really do anything.

The part mentioned above about poisonous/irritant stuff in your home really seems worthwhile to consider (you may of course have done this already) -- and can also be extended to workplace(s), general residential area etc. Did the problems appear after a change in any of these things, or do they seem independent from any such changes? Have you been away for extended periods of time since the onset, and did it make any difference?

Possibly independent of changes. I was away for a week in Spain earlier in the year and I felt okay, not hugely better, still had constant frog in throat (not sure if this is acid or mucuous) and was weak occasionally.

I tried sleeping in different rooms and stuff. Personally I'm not altogether convinced it's something in the environment, though the fact it gets worse in winter could suggest that.

(k*l*an), that'd be great, any suggestion appreciated.

Thanks again everyone, it's actually so much easier to discuss this in print where I can set out things chronologically whereas in person it's incredibly hard to outline.

bah....revive.....such a downturn in health lately...after 6 months of thinking I had things under control feeling worse makes me realise I never had anything under control, I was just lucky.

how often do you go to the dentist?

once a year generally.

Did you try Jed's cider vinegar suggestion? Did it help with the reflux? A lot of people swear by it, and I've been meaning to give it a go ever since I started having episodes of reflux again.

Also, this may seem like a really stupid question, but: are your pants too tight? Wearing things that compress your abdomen too much can fuck up your body in all kinds of unexpected ways -- not just your GI tract, but even your heart rhythm. Harper's had a small feature on this, some years back. I think part of the reason I've been getting reflux lately is that I gained 10-15 lbs. and now my pants are generally quite snug. Time to diet.

I don't claim that either of these will fix everything, but they might help somewhat.

it's not a bad point, I definitely think the tight belt thing can worsen stuff and have probably put on a little weight in the last few months. it's at that stage where exercise is difficult cos of feeling so bad to begin with, but I guess you have to start plodding back towards health when this happens.