Question: Hello, I have been trying to solve undiagnosed chest pain for about 6 years, my symptoms have slowly gotten worse over the years and appeared in this order.

- Joint pain in feet (severe)
- Small amount of "air hunger" only at rest
- Uncomfortable feeling in chest
- More Joint Problems
- High Uric Acid Levels (presumed gout)
- Uncomfortbale with XXXXXXX breath
- Pain with XXXXXXX breath
- Large pains in chest when breathing deeply
- Low 02 Saturation 85 - 95%
- Low Blood O2 gas
- Worsening chest pain
- Very Strange burping - like my body was forcing me to do it
- Squishy feeling inside chestin between lung and chest wall
- Feeling very unwell
- Lipoma growth in chest cavity
- Strange Crackling noise on exhale at night
- Feeling air hunger when lying down
- Worsening chest pain
- Coughing up Blood
- Positive Shunt Study test

I am a 40yr old male - rather overweight 6ft2in 113kg - howewver I am still quite fit and play football 4 times a week - I used to be a pro soccer player (goal keeper).

I smoked in the Army but not heavy and I was a heavy drinker but not currently the only family history is Ulcerative Collitus, Bowel Cancer and Nephritus

History - this all seemed to start back in 2006 after a trip to Thailaind and Germany and after I got vacinated because of the outbreak of German Measles at that time - at this time I was also exposed to
a sex worker who had HIV - I was given Anti Retro Virals for 2 weeks and never caught the disease. IT all started with a strange feeling of not getting enough air, I got a lot of joint pain in my
feet,
but as my Uric Acid levels were high they assumed gout, this continued for over 12 months -
I had fluid removed from sore joints and uric acid crystals were found, treatement for gout was started - this did not reduce my Uric acid levels - it continued to get so bad I could not walk,
they did an MRI and a Rheumo said that the damage seen - florid synovitis (or what have you) and other connective tissue issues, looked like it was more than gout.. in the end Prednisone
was administered and within a day I could walk freely with no pain...
The difficulty breathing got worse and worse, I was sent to a sleep specialist, they diagnosed me with Sleep Apnoa and I
have used a CPAP since, during the night of my sleep study, my O2 sats dropped to dangerously low levels - after I started getting pain in the chest I was sent to another rhuemo who thought it
might be Arthritic - but he ruled out Arthrius as the cause, I have been tested for Lupus, XXXXXXX R Facter, sarcoid etc etc I do have bad psoriasis but was told that it was unlikely to be psoriatic
arthritus -
they decided to do a Pulmonary Sprial Angio, which found some dark pathces on the bottom of my lungs, but nothing exceptional, and enlarged lymph nodes (pre tracheal) but nothing significant,
certainly no clots etc, as the pain worsened I had a cardio stress test...and this was fine, they ended up stopping the test as i could run for so long, they then did a spirometry test and it
was ok too, I have now had a total of 6 CT scans, a Galuim scan and MRI, several XXXXXXX tests and 2 cardio stress tests as well as ultrasounds of heart pressures - the most they have ever found
was patchy infiltrates, some fluid like signs (possibly from being stationary) and minor dependant basal atelectasis in the base of both lungs - each time they have assumed inflamation.

The galium scan revealed considerable bowel retention, I had a Endoscopy, which showed mild Gerd symptoms but no hernia - I have since had another which revealed the same with more Gerd,
I decided to see a general physician - they tried prednisone which worked for the first few months, but I grew very fat and it seemed to wear off- they tried methtrexate which did not help -
during this time I caught food poisening and had a vasal vagal black out while driving and was in a serious accident but not injured -

I had a PH Test done to measure acid reflux....
this found that acid was coming up at night and staying up - they decided to do a Fundiplication which did not go well, it took 3 hours and my heart stopped - whenever I drink water now,
it does not go down for ages, it sits high in the chest and I can hear it sloshing around - the strange need to burp has stoped however and I fart a lot more...Since the antiretrovirals my tryglicerides and chol
have climbed even on 80mg liptor -

I have elevated LFT's but this is suggested of fatty liver or the lipitor, My chest became more uncomfortable and i could feel fluid inbetween the lung and
chest wall, but no one could hear any friction rub and it did not show up on CT's - I had a bronchoscopy which was normal and more recently have had two more -
the first of which revealled squamos metaplasia (but no cancer cells yet) and abnormal cell growth in one lung, the second one revealled infections and more metaplasia now in both lungs
as well as chronic inflamation - there were abnormal areas to sample from.

My O2 sats were tested and remained lower than 91 they decided to test my O2 blood gas which was also low
and then performed a shunt study which proved I have a shunt, I was sent to cardiologist who performed more stress tests and untrasounds and said my heart was fine -
a buble study was done with no sign of a shunt. The feeling of being unwell and wanting to pass out continued but joint pain had gone away for some time -
I tried more aggressive treatments for gout - higher doses of allupurinal and other gout meds and anti inflamatories and am currently on Sulphasalazine -

I had strange issues where a bursa on my elbow
would get bumped at sport and my whole arm would get infected for some reason causing eodema. Recently I had a lot of eodema in my legs, especially when sitting for more than 1 hour.

I started to cough up more blood and was finding blood on the pillow in the mornings, it was bright blood and I dont get nose issues, but I got ear and nose checked anyway as I constantly have
a post nasal drip - it was all fine - it was suggested I mght have a pumlmonary eodema but the amount of CT's I have had to date should have shown it by now, The crackling noise at nght on exchale is
causing a lot of stress for my partner as she can hear it quite well - I have grow pretty tired of all the guessing
and personally I was prepared to let it all go as I was sick of the radiation exposure, but it just seems to get worse and now I have pain on both side of the chest when breathing XXXXXXX and it feel heavy
on the left side.


my O2 sats are now down to 92 when lying down, yes it changes a little when lying down
I went to have another PH study done, but they could not get the sensor into my gut - I seem to have a sore upper gut all the time, I tried foods without gluten and this helped for a little bit but
as soon
as I excercised it got worse again - I have tried fluid only diets which help the pain just under the bottom of my ribs (around the upper gut) but does not help with the breathing issue, I have tried a
Asthma challenge test which showed I do not have asthma - the fluid in chest feeling seems much much worse and the feeling of being unwell is terrible, my hands keep swelling up and occasionally my legs
still get oedema - if it would just stop at this level I would feel ok, I have always had a lot of lipomas in the chest and I had one removed by a doctor who to be honest was very sheepish about it all
and swore when he removed it as if he was frightened (this was when it all started too) but these lumps seem to be a lot more and I seem to have quite a few in the abdomen below the ribs.

Thats about all I can tell you - I am NOT a hyperchondriach (spelling) it has just been 6 or more years so I know a thing or two about the issues - there is definately something wrong, but I cant work it
out and neither can the Doctors, so I am asking if there is something else I could try - my bet would have been Psoriatic Arthritus but they say it normally is not in the chest wall and it does not lower
O2 or make you feel unwell - it just causes pain.
The only other thing I could think of is a GUT issue - but not sure how else I can test this. - Could this be a connective tissue or autoimmune issue?

Wow thanks for such a prompt reply -

I have always thought Psoriatic Arthritus as I have Psoriasis or a rash, on my penis, head, chest and anus, I dont know what enthesitis is but I will look it up, I am not exactly sure if I have had my hlab27 tested - I assume this is a gene marker right?

I am pretty sure I had some of those tested when they thought I had ankolising spondalitis (spelling) they even did an MRI of the sac joints to check on this, they did find some wear and tear but I am an ex profesional goalkeeper - that would be expected they said it did not look like ank spon - is this what that hlab27 checks for as I am pretty sure they checked for a gene marker for ank spon.

Anti inflamatory pills dont work much, I havent tried the one you mentioned, but have tried many, Bruffen works a little but only for the feet, its almost like it never reaches the chest wall - I am currently on suplhasalazine which helps a little but not much, I have tried Indocid and lots of others - the only thing that ever works is prednisone - and it works well in high dose...more for the other joints than the chest which I have not had huge problems with in the last few years.

ESR and CRP are always up, but I tend to go to the doc whenever there is a flare up - they always assume gout as soon as they get the bloods back and uric acid is high.

I find it real tough to lose weight, I excecise 4 times a week and hard excercise and I mostly eat Thai food which is low fat - it does seem to get set off by seafood and pastes too which may be worth mentioning.

In my opinion what happens is the low O2 causes cell death - and coupled with the cell changes in the shest and cell death from psoriasis - this causes uric acid and gives me the high reading... then I get the crystals - they cause irrataion and then my belly swells up making the stuff it needs to fight what it believes is infection - its like my immune system is on overdrive... I never ever get so much as a cold.

I have seena few rhuemos to date - the first one many years ago thought perhaps Psor Arth - but since then they have all said no - the reason being that it is rare in the chest wall, I dont have a suasage digit, I do have one very swolen knuckle that is always arthritic - I dont have pitted nails.

I am curious if there are any infections that can cause joint pain...the reason I ask is most of the times I get admitted I bumped something and it has blown up amazingly - then I get eodema around it from the fluid, they assume infection and give me a intra venous antibiotics.... about three days later...NO CHEST PAIN - of course in hospital my diet changes not that I eat a lot of red meat - but after a while it just comes back - I have noticed each time I take clyndamiacin it gets a bit better too.

Personally I think it is Psor Arthritus - but they say that can NOT make you sick, does not affect O2 sats or cause a shunt, it can cause arterial leaking - I dont want to go back on Methotrexate as I think this is what damaged my liver - and I am currently on sulphasalazine - which is a normal treatment for Psor Arth anyhow.

So with allupurinol and sulphasalazine should it not be under control.... I also got told that Psor Arth comes and goes - this is constant - non stop - so what is the next step - sorry for the overload of info

Ok I wont ask too many more questions but let me get these out of the way.

Psor Arth - Can it;

1. Cause enough inflamation in the pluera that it can feel like fluid is in there?
2. Cause the crackling noise on my breath after exhale?
3. Cause me to breathe shallower - so that my sats are lower?
4. Cause inflamation to the point of bleeding?
5. Cause stomach upset and a lot of Gas?

I dont know what a TNF Blocker is but I assume it is some kind of pain receptor blocker...I can live with the pain easily - its the noise and worsening and blood that causes me alarm.

I have found crystals in the synovial fluids before - but the allopurinol does not lower my uric acid much.

Q/ Could I be having a reaction to the Allopurinal or Lipitor?
Q/ Are there any bugs you can catch O/S ie parasites / Bacteria that can cause arthritus?
Q/ What is a TNF Blocker - will it turn off pain signals or will it stop the immune system.
Q/ Have you ever heard of anti retro viral drugs making the immune system go crazy?
Q/ Would an MRI of the chest show the arthritus (dont want more radiation) is there radiation in an MRI - with Magnets I assume it does not have radiation - except perhaps in the contrast?
Q/ Are there any Gut Bugs that cause arthritus?
Q/ Why does prednisone release the pain almost instantly?
Q/ Why do some antibiotics help?

Ok now this will sound very weird to you - but each time I get a flare up in an area other than my chest, they find that the ligaments are damaged, they assumed its becasue of all the sport I played, but its almost like my body attacks protein - especially the protein found in the ligament ends - each time a flare occurs, the ligaments are weaker - its like it gets eaten away, in fact some of my ligaments are chronically deficient ATFL for instance.

Everytime they find crystals or heat - they point and shout - GOUT - but then when it does not settle for 3 weeks or more they scratch their heads

If I went and got that HLA B27 blood test - is there others I can try at the same time, I think I have tested most - last time I had blood taken I collapsed - vasal vagel again - but I have given blood heaps so it was odd to happen - so I dont want to do it all the time.

I assume there is no definiative test for Psoriatic Arthritus but my Respiratory Physician is considering taking samples from the Pluera - which I want to avoid if it is just arthritus, but the low sats and the blood makes doc's concerned.

So with this TNF Blocker would it stop the Psoriatic Arthritus long enough for me to prove it?

Most importantly I want to know what happens if this just keeps going, will it start to attack my organs or just my bones and ligaments - I can live with the pain that is really not an issue - its just the concern that it might damage aorta or lungs etc - I am most concerned about the squamous metaplasia - could constant inflamation from Psoriatic Arthritus cause this?

What is the outlook for this disease, I can see its getting worse and spreading to the other side of my chest - so how does it progress - thanks so much for your help....I really really appreciate it

Awesome info thanks.... last qtn .... you say the tnf blocker would help reduce symptoms for 8 to 12 weeks...do you mean it will start to work in 8 - 12 weeks or it will only work for 8 -12 weeks... ? So I can get the HLAB27 test but do i need to see the rhuemo to get the blocker..or can my local GP issue that - what do I ask for exactly? do I take it as well as the sulfasalazine... and does it have side affects or cause upset to my gut

Hi, sorry will close shortly..and give a god review but I am confused.

If it only lasts 12 weeks, what is the point, or do I tke one dose and that lasts 12 weeks then I take another and that lasts another 12 weeks?

Sorry for asking so many qustions but you are the first helpful doctor in 6 years - so after i close this, can i find you again or is it random or are you th only rhuemo?

I had a MRI chest and abdo done today, the radiographer told me it was a waste of time to MRI the chest t all as it cant see anything becasue you need to breathe and the bones are in the way..I mentioned the connective tissue thing, he said I needed a cat scan for that...doctors are sooooo useless here - I promise to close after you answer those two - and thanks so very very much