Mystery illness, please help! Includes concussion, pleural effusion etc

Are you sure you're not a doctor?! I wish I had your questions when I saw the pleural doctor today! I'm not sure about some of the things you've I've said, but I know when I was admitted in Aug I tested positive for clots and was given an anti-coagulant injection into my stomach every day. But I don't think they found anything. I tested negative for this in May. I don't think they're looking at my heart anymore, I've had normal ECGs and tested negative for the blood test for heart attacks. 

When I had the vasovagel, my HR dropped to 42 (it's normally around the 50s when resting) and my BP was 80/47, blood sugar was normal. It's not been that low ever since.

I told the pleural doctor about my theory, he seems to think he would be able to see some of the endometrial tissue on the ultrasound and that my symptoms would be cyclic. But that contradicts what I've read and my pelvic endometriosis symptoms were sporadic. I've had no recent surgery or ever been pregnant. Had a breast and pelvic exam, all normal and in date smear test (and GUM all neg). Had cellulitis in my little toe in June and had a course of antibiotics for that too. 

I don't know about the fungus/liver/pancreas. I think my thyroid is normal and again have tested negative for Lupus. I heard today I've been referred to the rheumatoid doctor just to ensure they've not missed anything. Also, they're going to discuss my case with another hospital at their weekly case conference. 

Today, there was no fluid in my lungs at all so it seems the steroids did that. My CA-125 is low too, only scored 45. I was negative CEA and CA19-9. 

I don't know if any of that helps?

 

ugh.They are sending you to the rhumatologist because you appear to have responded to steroids and so far that indicates, all things considered, rheumatoid arthritis their preferred diagnosis ...assuming of course that it is indeed steroids that are behind the disappearance of liquid... Hope they are keeping in mind however that your effusions also disappeared after a week of antibiotics the last time, which makes it more likely that there is a different cause and that in both cases the withdrawal of liquid may have occured due to something else entirely and not antibiotics or steroids. OR a combination of conditions - i.e. coincidence (which in my uneducated opinion would be so very unlikely). But the only thing they can do is follow procedure and procedure is deduction. It is good they will collaborate and convene. Brainstorming is much needed. You now mention thrombs. Do you actually have diagnosed thrombophilia? If not, where did the thrombs come from seeing that you had no surgery and seeing that this did not result in any embolism or stroke etc? And how is your blood clotting factor? Embolism was excluded you say by the way, how? Your possibilities include but are not limited to: endometriosis spreading, rheumatoid arthritis, complications from an unhealed bacterial infection of the lung or pericardial disease (which can be seen by imaging and even x-ray which i want to assume they have done), secondary fungal infection of the lung (but you don't mention coughing) or some kid of infection of the pleura.  The fact that your CA125 elevation is relatively small (was it this low to begin with or has it been higher and declining? ) could suggest a number of things including most of the above or nothing important at all. Were you menstruating at or near the time of the test by the way? Are your periods regular and specifically have they been regular since the beginning of this year? I did not ask but what was your basic bloodwork like? Lymphocytes, leukocites, urea, liver function? Other differentials would be TBC, liver disease, pancreas rupture . Have you spiked a fever at any time during this ordeal (since May)? Any jaundice? And finally - you never did find out what was the cause of your "vasovagal" in April? Do you remember anything in the weeks preceding the episode? Viral infections, chest pains, starting a new medication, exposure to chemicals, asbestos, recreational drug use especially inhalant kind etc (no need to tell me obviously LOL - just throwing it out there for you)...anything? Have you fainted again since April? Do you have pets at home? rabbits/dogs/cats/hamsters? (I do hope they already covered the queries above with you and what i am asking you is redundant!). How much liquid was estimated to be in the lung? What was the area covered and how much was removed by syringe unless they took only a tiny sample? Did they mention possibility of testing tissue? My head is reeling and i can only imagine how you feel. I am looking forward to hearing they found the cause and fixed it very very soon! Keeping it in mind meanwhile and digesting. Am also trying to get hold of my husband's amazing thoractic surgeon in case he has any ideas to bounce. If you can think of anything else let me know. Brainstorming is all you and they can do at this point. Frustrating.

Thanks again fir all the interesting info. I can't answer all your questions without speaking to my doctor, but interestingly enough today my discharge paperwork from last week arrived.  

I don't know what all this means, however, it says Co-morbidities: bilateral pleural effusion, exudative, ANA, ANCA, rheumatoid factor negative seum electrophoresis negative, CPTA no embolus or focal lung lesions, C3, C4, normal, CA-125 - 45. (My previous discharge notes mention ESR awaiting result, but no mention of a result in this one.) CT abdomen/pelvis - no ovarian lesion. 

Negative for signs of Lupus, no rash, no photo sensitivity, no excessive heartburn, no raynauds, no thrombophillia, no history. 

Physical exam - heart sounds 1&2, abdomen soft, non-tender, no asites 

Reduced entry bases 

No cough, no fever. 

ECG - sinus rhythm

Bloods normal. 

Not been detected for Acute Kidney Injury

No sepsis

Risk assessment for VTE prohylaxis - no intervention needed. 

That's all the useful info from my discharge paperwork. No fever since, no jaundice, no exposure to anything untoward (especially given my job, that would be out of the question! I hardly even drink that much now!) The only thing that happened was I had two bad colds this year that wiped me out from physical exercise for about three weeks each time, off work for one week with each. Very unusual for me to get ill.  

Since May 15 I have lived with a damp ensuite but I don't live there permanently, just week days. No sign of black mould just water sitting under the bath that I discovered when it got high enough to leak, still waiting for contractors to fix it though. I did see a weird yellow mushroom in the hallway carpet, but the cleaner cleaned it away and I never saw it again. I haven't been there since the end of July though. And my symptoms worsened even though I wasn't there. Thought I'd already be dead if it was Legionnaires! 😳

No allergies or pets, only see a cat on occasion when I'm home for the weekend. No one has asked me that yet! But having grown up with all things great and small and in the countryside, I don't think I could be allergic? Or is it something else? 

I have only nearly fainted twice since, both times it was in hospital when I was on a lot of drugs but I never had the whole array of symptoms like the original episode. But funnily enough, have has two occasions of ringing in my ears, but was already laying down, which is how the original episode started when I stood up at work. I wonder if my BP and HR were dropping but nothing came of it as I never tried to move. Next time I hear that noise, I'll try and get up and see what happens! I'll make sure I'm near some cushions! 

I felt really good the week before as had been running, swimming and cycling a lot. The only thing I noticed on that day was I felt overly thirsty but not ill. 

When I saw the chest X-rays yesterday, my lungs were half the size that they are normally now the fluid has cleared. They took about four vials, I think they were straw coloured and not bloody. Not sure how much fluid but could find out. No biopsy done. 

I've only had one CA-125 test and was on the first day of my period, I looked at Meig's syndrome, but don't have those symptoms. I also read that of the 15% undiagnosable exudative pleural effusions, all turned out to be malignant - I'm hoping that's not true! Would be great to get a second expert opinion. 

 

Now we are clearing it up. Good info. I was asking about pets for pathogen exposure not allergy. You don't have allergy symptoms. CA-125 at just 45 on the first day of your period is pretty much consistent with...being on your period. Looking for ovarian growths on the part of doctors was nice of them, but probably totally unnecessary.

15% with malignancies is still a small enough figure. And your markers are fine so chances are small. Look, your condition is still not undiagnosable if they did not check for fungus and other cultures. We also do not know if your liver and pancreas have been checked (i really believe they must have done that). I see they checked kidneys which is great. The next time you get the ringing check your pulse and BP - no need to check if you will faint LOL. It says here no embolus and no thrombophilia. Are you sure that back then clots were indeed found or you were simply being given anticoagulants for the duration of your hospitalization (this is common practice for all inpatients to prevent thrombing)? Yes...you don't likely have legionnaires :D Nor TBC as I assume lesions would show up on xray if you did...but if they could check your ovaries after a CA125 elevation to 45 ON your period LOL I think they owe you some other free and pointless tests like culture for legionella, TBC etc. Just for the fun of it. While you wait to have it all figured out. Let me know how the second review at rhumatoid specialist goes. Meanwhile I will let you know if and when I hear back from the surgeon. Hang in there.

Thanks very much! I'm sure they said my blood came back positive for a clot but on further investigation I was ok, but I'm not sure if that's possible and I was also at my worst then so my recollection is hazy at best. I have a neurology appointment next week and the ultrasound the week after - watch this space! :-)

No more ringing in my ears yet, but I'll try the safer method you suggested! 

Have been doing more reading prior to my appointment tomorrow - have you seen this https://patient.info/doctor/pleural-effusion-pro

the last para worries me the most and all my reading of medical papers online state that all undiagnosed exudative pleural effusions are malignant with a poor survival rate, so now I'm worried I've just not been tested for the right type of cancer, what do you think? 

I still think you don't have an undiagnosed pleural effusion. All of the above still has to be covered. What if the tests were simply false negative for one of the things you were tested for? You can't know. Your blood would not be exactly hiding a malignancy as for one to cause such acute symptoms would hardly be secluded somewhere. Typically it would likely be on the actual lungs or breasts. Anything else is much much rarer. And even then you would have more symptoms. Have you been losing weight?

 

I wish I was loosing weight but it's stayed pretty stable since it happened. Yes, I guess so. I was just worrying myself as there seems to be no diagnosis forthcoming. Everything just seems to take so long! It's getting really frustrating now. I might try and call the consultant to ascertain exactly what tests I've had, what's been ruled out and what still could be considered as in just worrying myself unnecessarily now. Thank you for the reply.

Any news? How are you? The doctor I spoke to said he can't offer differential unless he is sure that fungal/bacterial cultures were performed, TBC excluded etc. He would also need to see the work-up done on the actual exudate. Level of protein, any other findings etc. Let me know if you get hold of any more findings from those original tests.

Hey, sorry just seen this. I finished the steroids last week, went back for a repeat chest X-rays which was clear and they said there's no news and they re-did my rheumatology referral. I forgot to check about the fungal cultures. I had a bit of a cold so thought my chest pain might be that, however, it's been coming back the last 5 days and only getting progressively worse and the GP has asked today for an urgent referral to the pleural clinic and hopefully I'll be going tomorrow. The past two days have been the worst and if it gets any more painful, I'm off to A&E but hoping to manage the pain myself through the night. 

This time I had the beginning of my fainting symptoms yesterday but recognised them and laid down. It was twice in two hours. And this morning I've been feeling particularly nauseated, but back on oxoycodone and oramorph. But they're not as effective without the steroids and I'm still in pain in my right shoulder. 

Thank you for asking your friend, I really appreciate it, it's very kind. I'll ask those questions tomorrow.

In the end the GP couldn't sort out the referral and I ended back in A&E yesterday, I've been given a whole host of drugs and am back in on Tues to see the respiratory doctor. They said they're very confused as to why I keep getting pleural effusions as there is a small one appearing on my right side already having only finished the steroids last week and my chest X-ray was clear then. However the drugs made me vomit last night, so I'm going to take everything bar the opiates to see if I can stomach them. Although oramorph and oxycodone never made me sick before. 

This delaying and rewd tape is beginning to worry me. You should be with specialists UNTIL diagnosis. Why are they surprised? They don't have a diagnosis and are managing your symptoms only...repeatedly. If they are surprised they need to go back to medical school. You are supposed to be kept in and tested for everything under the sun at this point. This is ridiculous. What happenned with rheumatoid reevaluation? How slowly do they plan to move on this? Seriously

 

...have you ever had an echocardiogram done since this whole thing started? I know you said tehy stopped looking at the heart. What was done other than electrocardiogram when they were looking at it?

I was sick again on Friday evening, but the nausea was terrible and I ended up going to see the out of hours GP at the hospital. He admitted me straight away and I've been here ever since. They said they're not letting me go till the work out what it is! Pleural biopsy today and a visit from the rheumatology team later. 

They're thinking Lupus but I've tested negative for that, but they said you could get a false negative and I don't have any other symptoms. But apparently the biopsy will reveal all...

Well finally...Look, biopsy may or may not reveal all but it is certainly your best bet right now. Hang in there. I hope  you are as comfortable as you can be and that they get stubborn and find what it is. I am glad they admitted you. Please let me know how it goes. With you in thoughts.

A bit of dark humor...just remembered Dr House, great show..."It's never lupus!"  I certainly hope it is something less complex.

 

Gosh I have had the most traumatic day, 3 sites for the biopsy but 7 or more needles, two attempts to get the air out of the pleural space at the front of my chest and two failed attempts at a chest drain (because I was crying and screaming the place down mainly). Review tomorrow. Luckily in a side room as I'm the youngest person here by about 30-40 years! Gotta start watching House....😊

Sounds like a blast ....You must feel traumatized. i think you are allowed to cry and scream the place down. Being the youngest one there you must be something of a celebrity as well. May as well act like it and have some fun with it...I hope you have some kind staff there who make you feel as comfortable as possible. 

Any news? Any results? hope you are ok!

Still had the pneumothorax, but it was small enough for me to go home Wed eve. Repeat X-ray last Fri showed it was still there but smaller, then have another appt this Wed. Hopefully no need for a chest drain. I'm so sore and bruised from everything! No biopsy results yet. Am very chuffed they are considering writing me up in a medical journal as it is a big, "I told you I wasn't well" to the GP who ignored me for months. Oh yeah, and because it's so unusual. 

Oh...I would write him up one...the GP I mean. People who can't be bothered or simply lack capability should be forced out of practice. There was a point in time when what he should have done was say: look, this is beyond me - I am sending you out for a second opinion. Well...I am sure you are very excited about being an unusual case worthy of mention in the journal...How comforting! I am so sorry for your ordeal. The specialist i have spoken to has said he can't help without seeing results of various tests. I hope you are in good hands now. Biopsy could take another week. I truly hope it clarifies the situation.

Any news Willowtree27? Hope you are ok.

Still no real news, but this is what I have so far...still have a small pnemothorax but each time it is reducing so that's good news. The biopsy confirmed I don't have cancer or TB but apparently there is fluid around my heart well as my lungs. I'm on a decreasing course of steroids again and I believe they are going to try and change it at the end of the course.

They can't confirm whether it is or isn't seronegative lupus but have referred me to the lupus centre in London but said it could be a 4-5 month wait, although my GP was going to try and get it more quickly through choose and book. However, I booked myself a private appt next week (£230!!!). I don't want to wait indefinitely.

I don't know if I'm responding as well to the steroids now as have started having intermittent chest pains but not sure if it's the pneumothorax, biopsy or pleuritic pain coming back, so waiting to see how long I can hold out for before needing to go to hospital. Feeling very run down and tired, but been pushing myself to do more to keep me sane!

Any news? I will assume Lupus has been excluded as an option by now? Are you ok?

Willowtree27...any news? I really hope you are well.