
Heterosexual. Overweight. Having Joint Pains. MRI Showed Connective Tissue Disorder. Had Special Immunization For Measles. Suggest?

I have spent the last 8yrs (yes 8) trying to troubleshoot my worsening medical problem - it started with joint pains which was thought to be gout due to high uric acid, however after several MRI's it was found that damage was being done that was suggestive of connective tissue disorder, this progressed over a few years with steroid treatment being the only thing to work.
Before traveling OS to Thailand and Germany in 2006 I had special immunisation for some german measles thing that was happening at the time, While in ThaiIand I had sex with a hooker and after oral sex had a very bad chest infection - the condom also broke and I was told the hooker may have HIV and was given antirtrovirals for 2 weeks - Upon returning home I started noticing that when I had sat still for a long period of time I had air hunger and a feeling of not enough O2, they investigated and found my sats were at 96% - this lasted for about a year and I was prescribed CPAP 10PSI - a sleep study was conducted and my O2 sats went to around 85 at times at night -
The air hunger got worse and worse and worse - but only when relaxing and sitting still - I play soccer 3 - 4 times a week and am never really short of breath so it was odd that I had low O2 and I had ever really been a heavy smoker.
They did a CT and found patchy infiltrates and fluid in lower lobes but nothing major and there was no sign of infecion in the blood stream -
I started getting pain in the chest and upper abdomen so they did a PH study and found that I had large acid coming up at night and pooling in the chest so they performed a fundiplication surgery which I dont think went well.
Chest Pain continued and sats were dropping further so I had numerous tests - one of which was a shunt study - showing a 11% shunt however a bubble study showed no shunt in the heart and I have had a total now of over 8 CT Scans - I have had
1/ Stress Echo - Normal with just a bit of regurgitation
2/ Excericise stress test x 3 - all fine
3/ Mips and Meps fine
4/ Spirometory - all fine
5/ Tilt Test
6/ Bronch x 3 squamous metaplasia - often multiple lung infections and blood around metaplasia but no malignancy
7/ Asthama Challenge test
8/ Echo Cardiogram
9/ CT Spiral Angio - slightly atipical as the contrast did not spread properly
10/ D/Dimer Test
11/ Gallium Scan
12/ Methotrexate Trial
13/ Thoracic video exam laprascopiclly of the Pluera
14/ Gastrocopy - inflamed stomach wall
15/ Endoscopy - normal
I am currently ONCE AGAIN in hospital with chest infection and O2 sats of 89 on room air - I again have Heomoptisis and as always I have an rather annoying sound (crakle or rale) after exhale - this happens all the time nd is getting louder.
I am constantly feeling unwell and have to keep taking time of work, I have lost 2 jobs and to partners and I want to start a family (actually I wanted to 8 years ago)
Other clinical details of note;
Bloods:
High Uric Acid - even on allopurinol 30
High Chol - even on Lipitor 20
Biliruben - abnormal
AFT - Abnormal
AST - Abnormal
Other Medical:
Psoriasis - Head penis, bottom, behind ears and chest
Multiple chest lipomas
Liver Changes
Fundoplication does not seem good - seems as if water is trapping in the eosophogas and it moves as I breathe - possibly going into lungs
It has been suggested that there is possibly a Heptopulmanoary shunt - and I plan to get a fibrscan and MRI doen of the liver - my current respiratory physician is suggesting a Picc Line and extending antibiotics.
Basiclly, when I breathe I can feel the stuff in the very bottom of my lungs, but I cant get it out, I constantly have a post nasal drip and it goes down but wont come back up - on light exhale my lungs will make crazy sounds - but not at full exhale - they are worse when lying on my side, making it hard to sleep - my tomach makes a weird noise like pouring a thin line of water into a steel coffee cup - fluids moving from one chamber to another, I have blood around the anus, but I am told this may be piles
Mate I have had enough of this affecting my life, and I am scared of the PICC line as I am not entirely sure I dont have problem somewhere in my veins from the high cholestorol.
Can you suggest anyhting
Thanks in advance - I do have recorded audio of the stomach and lung noises
Please Help
It sounds like you have a lot going on. My primary concern for you is the pulmonary issues. I wonder if you have an ongoing lung infection versus some kind of inflammatory condition. You have had a bronchoscopy which presumably was negative....I presume the cultures were negative etc.
I would recommend you undergo a lung biopsy via a bronchoscopy to further evaluate your lungs for a potential diagnosis. This is a low risk procedure that can be done during an bronchoscopy. If this hasn't been done...it could be very helpful.
Has anyone every mentioned the diagnosis "Sarcoid"?
What is the current working diagnosis?
If you could answer the questions I have posed that would be helpful...I will then expand on my evaluation and opinion.
Thanks. I look forward to your reply.


Please dont take this the wrong way - but I am not sure you read all the information.
Anyhow in answer to your questions.
Bronch's
I have had 4;
1/ Relatively normal
2/ Two infections found, and biopsy found chronic inflamation and squamus metaplasia and blood
3/ Mucus and Squamous Metaplasia
4/ Two Infections Found - Bleeding - Worsening Squamous Metaplasia - there were at least 5 biopsies taken in this last one and a natal scope ws used to get lower - I also had Influenza A at the time so there was a lot of puss as well.
Note it as not the same infection each time
Sarcoid;
That was definately suggested at the start and I have had blood tests for this many times now - always negative, it can get better with Prednisone, so I was still curious about it but I have had it now for 8 years, and considering I have had IV steriods (ometimes for more than a week) I thought that would have dealt with it if it were sarcoid, also does sarcoid even last that long - 8 years?
Current Diganosis;
There is not one, they can not work out the problem, it is suggested that I might have a Liver shunt as I was a heavy drinker in my day - it also helps explain the low O2 but does not explain the blood in lungs - they think it could be an autoimunne thing or chronic infection at this stage.
Thanks for your help this far
I reviewed everything again. Sarcoid still remains a possibility. It can last a long time. Sometimes patients require extended courses of prednisone/steroids to get better. Sometimes we have to taper steroids over 3 to 4 months to obtain remission. In rare cases it can take a year or more.
With all of the issues you have and the persistent pulmonary issue, they may want to consider a VATS lung wedge resection/biopsy to get a bigger piece of lung to see if they can narrow down the possibilities.
In regards to the PICC line, I would ask them what they are treating with the extended course of anti biotics. Of its a legitimate concern then a PICC line for an extended course of treatment is not unusual.
Liver shunting or for that matter cardiopulmonary shunting does not explain the recurrent infiltrates and lung infections.
I hope this has helped. Let me know if I missed something.


Picc Line is Cancelled - He took severl biopsies of the broch's etc and Metaplasia reas, I get the results from this today.
This time I had Influenza A at the top of the lungs and Hemophilus Influenzae in the middle and the third infection was right at the bottom - they say this one will take about 4 weeks to culture
So they said that these are all easy to deal with withut a Picc Line as they respond well to antibiotics - the pics show a lot of bleeding in the airways.
The doc now intends to have me go for the MRI Liver but expects that it will show nothing..he has suggested sarcoid as a possibility and is offering to biops my lung.. he said I was not well enough the other day to handle that.
He has suggested some Macrolide to help get the last bits up
I really dont want to go on extnded predinisone again..I have gone from 95kg to 120kg in last three years on steroids and for some reason it makes my sweat stink terribly, so bad that I cant work in an office
I had VAT of the pluera and found nothing - would that have found sarcoid...a nd would i not have seen soe results in the sarcoid blood test?
They have been pumping me full of steroid by IV at the moment - so if I went for sarcoid biopsy - would it be bad timing as it may be in remission?
Thanks for the fast response
Being on steroids at the time of a biopsy would not alter the biopsy results in regards to sarcoid.
I hope you get a resolution to your issues soon. Take care.


Transbronchial biopsy vs VAT lung wedge -
I have options for both - I know the VAT is more thorough - but it is 1.5 weeks away and Iam in hospital for one eek and can do transbronch now - which is more likely to find my problem - and would it hurt to do both if I did transbronch first and it did not find sarcoidosis
Also I have a problem that when I lie down I get vertigo about 3 seconds after my head hits the pillow - lasting for about 5 seconds - could this be related to my lung thing?
Your vertigo could all be related.
Best of luck to you mate.

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