My sister is sick

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worried sister
New Member


Date Joined May 2010
Total Posts : 10
   Posted 5/9/2010 10:10 PM (GMT -6)   
My sister is 37 and for the last year and a half has had the following symptoms:

Chest pain under her ribs (if she leans forward, it eases a little)
Stabbing pain in her chest
Constant pressure on her chest (like something is sitting on her)
Fast Pulse
High blood pressure (recent development, as in the last 3-4 months)
Extreme Fatigue - is getting worse as this progresses
Is extremely affected by altitude changes


They originally diagnosed her with Pleuritis (not sure about the spelling), and more recently with possible RA in her chest. There have been many possibles in between. They have done x-rays and MRIs of her chest. Her lungs are clear, no fluid. The doctors can hear a "scratching" sound with a stethoscope.

Everything is a "possible" diagnosis as any and all blood tests come back with only showing that there is inflammation in her body somewhere (we presume in her chest cavity), white blood count is a little high.

She has seen the family doctor, several emergency room doctors (when her breathing has restricted to the point of not being able to catch her breath. This is caused by an increase in chest pressure occasionally), a neurologist, a heart and lung specialist, and a few others. The RA specialist didn't want to see her as he said that all the tests that he would run have already been done, but "felt that RA could be a possibility."

We are out of answers. The worst thing has just come up this week. There was someone else in our community, in his 50's who we were told by his family members died 2 weeks ago, after living with these same symptoms for 3 years. He also had the "guessing" diagnosis, as no one could figure out what was wrong. He died from suffocation.

I am not willing to let this go without giving it all I can. I figure that if there was one other person out there with this, there has to be others. Please, please, please help me find some answers if you can.

She is currently working 3 days a week, and more often than not falls asleep while sitting at her desk. She has fallen asleep while driving. She does not have sleep apnea, that has been ruled out. She is just exhausted. She is sleeping a total of 11 hours a night, then at least 6 hours a day on her days off.

Current medications
Tramadol/Nortptyline
Naproxen
Metoprolol
Ambien (because the pain is so bad at night)

DebNan
New Member


Date Joined Jul 2010
Total Posts : 1
   Posted 7/17/2010 1:27 PM (GMT -6)   
I'm no expert, but those symptoms sound very similar to what my sister is going through. Her diagnosis is definite - it's pericarditis. The cause and treatment are in question. It's been heartbreaking because the symptoms come and go and they are not able to resolve it. From what I've read, that's typical off pericarditis. Has this diagnosis been considered for your sister?

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 7/18/2010 12:54 PM (GMT -6)   
worried sister
Yup, my white cells were high too all the same symptoms....she probably has paracarditis...they need to do a ultra sound of her heart and a Angio/ Ct....she needs to find some answers.  This happend to me last sunday got the itis...if it is viral they put you on Ibuphrophine...if its bacterial then she needs some antibiotics.  Good luck and keep pushing forward to find answers for her..
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


worried sister
New Member


Date Joined May 2010
Total Posts : 10
   Posted 7/20/2010 11:51 AM (GMT -6)   
She had an ultrasound on her heart about a year ago, it was normal. Was on several antibiotics and has taken ibuprofen and naproxen. I think she still takes ibuprofen.

Here is an update.

They have ran every blood test I think there is, and still nothing. White count high with no apparent reason. Some of the hormone levels were boderline, nothing they would be concerned with but are still watching very carefully. Her fatigue level has increased as has her pain level. They just did another catscan and MRI. All they can see is a white ring around the outside of her lungs, which they presume is fluid, but don't have a cause for it or a name now. She is supposed to see another neurologist and a Rheumatologist soon. They have now tossed Fibromyalgia into the diagnosis mix because her muscles seem to be getting weaker and she has a lot of muscle pain now as well.

Keep giving me ideas. I give them to her, and she talks about them with the doc. Oh, and this last round of blood tests they tested for parasites as well. Nadda.

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 7/20/2010 12:55 PM (GMT -6)   
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worried sister
  Gosh, I just don't know that is just terrible...If there is free fluid in her why did they not explore where it is coming from?  Firbromyalgia would not be a answer for the fluid, at least I would not think so.  Usually joints ache and muscle aches and fatigue, are some of the symptoms...Hope she gets answers soon.
 
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


worried sister
New Member


Date Joined May 2010
Total Posts : 10
   Posted 7/21/2010 6:25 PM (GMT -6)   
On the fluid around her lungs....This is the way I understood it. Its a ring, trapped under a membrane all around her lungs now. When it first started, it was mostly on the right hand side of her chest, but has increased now to both sides, and on the scans, now only about an inch of her lungs are not covered, and that spot is on the lower left hand side. There isn't any pressure being put on her lungs. They can't test it because they are afraid to puncture the membrane containing the fluid...said it could be like inserting a needle in a balloon.

We were at the ER yesterday, as her pain was horrible, she couldn't even talk straight. They took another 4 vials of blood (19 this month alone so far) and did chest xrays again, nothing but the elevated white blood count and the numbers were right about the same as a month ago. She described the pain as a burning in her arms and legs and they felt weak, like she had been running for a long time, but the burning sensation was very intense and when added with the increase of pain in her chest, it was just too much. They gave her morphine, and another drug to relax her muscles and that seemed to help a little so they sent her home with more pain meds. She was actually able to sleep for 5 hours straight last night, and she hadn't been able to do that for 4 days. I am getting really scared..

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 7/21/2010 6:42 PM (GMT -6)   
My god, I know your worried, who wouldn't be...gosh how terrible.  I have no idea what it could be, but keep pushing forward till you get answers.  How horrible for her, to have all this and no answers.  Maybe take her to a different hospital with different doc's and maybe they can come up with something that the others could not find...  all my prayers are with you.  Keep us posted..
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


taiga
New Member


Date Joined Jul 2010
Total Posts : 8
   Posted 7/22/2010 1:06 AM (GMT -6)   
worried sister --

I wanted to reply because it sounds like you and your sister are both going through a rough time right now! If she is dealing with a type of connective tissue disorder (RA, lupus, polymyositis, etc.), then her visit with the rheumatologist will be crucial. It can sometimes take quite a while to get a diagnosis if any of those things are the cause of other issues, but I'd imagine that they'll run a ton of bloodwork on her (key things to look for are any blood count abnormalities [white blood cells, red blood cells, platelets], ANA, rheumatoid factor, any specific antibodies they test for (this will depend on what they suspect initially), ESR, CRP...those are the main ones I can think of to start. The ANA will help rule certain things out if it is negative (for example, 95% of lupus patients have a positive ANA and most of the other 5% have other specific antibodies to help identify their diagnosis), but the ANA does not conclude that one has any specific disease or any disease AT ALL. Rheumatology can be a bit confusing.

I was diagnosed with lupus a few years ago after five years of trying to get a diagnosis. Fluid showing up on my x-rays, CT scans, and echos helped to push my diagnosis forward. I had one doctor say I had fibromyalgia (even though my muscles weren't even sore..) because my bloodwork was not overly conclusive. Later on, other doctors looked at the scans to see pericardial effusions, pleural effusions, and free fluid in the abdomen (all of these documented at different times). As one doctor told me -- fibromyalgia does NOT cause inflammation or fluid in the body, so that was not a sufficient explanation for the problems I was dealing with. If your sister has evidence of inflammation or fluid, I would make sure she is stern to push forward with a rheumatologist to find an explanation for such things. Fibromyalgia can certainly occur in addition to other disorders, but it does not cause inflammation (unlike things like RA, lupus, -myositis, etc.). Key info to know and understand..

Sorry for the long post. I know how hard this must be for you both because I have definitely been there. If she doesn't get answers from her doctors, she needs to not be afraid to MOVE ON and find new ones -- for many people, finding the right doctor to listen and pursue finding the cause of your symptoms (and not just placating you with drugs to treat the symptoms alone) will be the defining factor.

Good luck!
Taiga

P.S. Regarding the white blood cell count, I'm not sure of what can cause a high WBC count outside of infections. Lupus causes my WBC count to be low rather than high, but that might be different in other disorders.

worried sister
New Member


Date Joined May 2010
Total Posts : 10
   Posted 7/23/2010 10:04 PM (GMT -6)   
After a 3 1/2 hour appointment with the doc yesterday, they might actually have something!

He was going over and over her blood test results yesterday and thinks that she has a dual thing going.

Pleuritis with Fibromyalgia and that (still not sure how this would work) the fibromyalgia is somehow blocking the meds from working on the pleuritis. They have decided that the white ring around the outside of her lungs is definitely pleuritis, and waiting on one more test to come back on Monday to verify the fibromyalgia. I know that fibromyalgia is not an easy thing to deal with or live with, but even that knowledge is better than no knowing what is going on at all. Thank you all so much for reading and listening and putting ideas out there.

All the RA tests came back negative. This is just crazy. Also, I asked more about testing the fluid around her lungs, and they said it was too great of a risk to puncture and infect her lungs to do that. The "fluid ring" is just millimeters thick, and the membrane is like celophane.

I am learning way too much stuff about this!!!!!

taiga
New Member


Date Joined Jul 2010
Total Posts : 8
   Posted 7/23/2010 10:59 PM (GMT -6)   
Glad to hear they think they're getting somewhere. I would caution you and your sister to remember that many autoimmune disorders (RA being amongst them) can test negative for years before showing up in bloodwork. If she continues to have bouts of pleurisy (or pericarditis, for that matter), I'd encourage your sister to get tested again...and again and again, just in case. Fibromyalgia does not cause pleuritis, so if it is as her doctor has suggested (pleuritis independent of an underlying cause), then it shouldn't be recurrent as it is most likely from a virus or something.

I don't say this because I think it is still RA -- I have no clue! I'm just saying this as someone who had pleurisy and pericarditis several times over the course of 5 years PRIOR to being diagnosed with lupus. My original rheumatologist also told me that I had pleurisy and fibromyalgia and dismissed me after that point. Five years later, I had several rheumatologists say that he was crazy...I didn't have fibromyalgia at all and that pleurisy or pericarditis don't "just happen for no reason." Another thing that strikes me a little weird is that they are saying the fibromyalgia is blocking the meds from working on the pleurisy. That doesn't even make sense to me. I'm not a doctor, of course, but I have learned a lot about these issues over the past ten years and that just sounds a little strange.

Anyway...off my soapbox. I really hope that they're getting to the bottom of your sister's problems and she will feel better soon!

GinGin20
New Member


Date Joined Jul 2010
Total Posts : 6
   Posted 7/29/2010 9:45 PM (GMT -6)   
My son had very similar symptoms and was eventually diagnosed with lyme disease and co infections.
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