I am a 38 year old healthy female up to this point anyway. If anyone can give me any input, I would truly appreciate it.
Symptoms Started 1/30/2011 - Sunday
Sharp pain in ribs/lung under left breast. Could not move, stand, lay down – nothing made it better – This lasted about 2 1/2 hours, then I felt a ‘Pop’ and the sharp pain subsided and turned to a dull aching pain with difficulty getting a full breath and dull pain in both shoulders.
2/2/11 – Went to ER because of left rib cage pain (entire rib cage, heart, lungs, back) and difficulty getting a full breath. X-Ray and CT scan of chest negative (Primarily tested for Pulmonary Embolism). Was diagnosed with ‘Pluerisy’. Prescribed anti-inflammatory – Mexathroprodesine?, and a Z-pack (Not sure why they gave me an antibiotic). Followed up with GP on Friday 2/7/11 – he diagnosed me with Pleurisy as well. My husband wanted him to refer me to a Pulmonologist. GP did so hesitantly.
During this week from 2-2 to 2-7 I was becoming increasingly weaker and fatigued (I felt like I had the flu). I also felt like my bones were hurting, primarily on my left side. I started having bad bouts of itching (at this point mostly on my lower left leg (shin area), and the back of my scalp). My vision began to worsen (blurred vision, feeling like I had to constantly wipe my eyes clean, waking up every morning with dry crusty eyes). I noticed my lymph node in the right side of my neck was swollen, but it did not hurt at all. Not sure how long this had been there.
2/9/11 – Went to Pulmonologist – He said I did NOT have Pleurisy. He heard an unexplained ‘squeaking’ noise in my left lung. Pushed on my left rib cage all over. Had pain all over, but one place was particularly sensitive. When he pushed on the sensitive spot it felt like he moved something and I was able to get a full, deep breath. He thought I might have a broken rib. Sent me for X-Ray and blood work, which came back normal. He also put me on indomethecin (sp.??) – but I had to stop taking it because I started throwing up. Sent me for a bone scan. Bone scan showed mild arthritis in both shoulders but nothing else. He referred me back to my GP. Last visit with pulmonologist was on 2/25/11.
In the meantime, over the next few days I developed what looked like visible blood vessels in my face from my jaw line to the middle of both cheeks. It is hard to describe – it looks like fireworks that explode in the air (kind of), mixed with some white patches in between. Redness between bridge of nose and over eyebrows.
3/1/11 – Went back to GP – Looked back in chart – saw I had an abnormal lymph node in abdomen two years ago and wanted me to go for a CT scan of abdomen. He felt my swollen lymph node in neck and said once I get the CT scan of abdomen done he wanted me to go to an ENT to get lymph node in neck biopsied. CT scan of abdomen came back normal. He also ordered blood tests to check for mono, rheumatoid arthritis and lupus…Came back negative.
3/7/11 – Went to ENT –My husband and I were NOT impressed at all with his cavalier attitude. Felt the neck mass, and put a light up my nose and down my throat. Said my throat looked good. Sent me for a CT scan of my neck. CT scan of neck came back normal.
3/11/11 – Follow up with ENT - He felt my neck again – said the mass I felt was not a lymph node, but was my tonsil. I then informed him that I had my tonsils removed 20years ago; he then said it was carotid bulb (At this point it is about the size of quarter (best estimate). This ‘thing’ in my neck is still swollen and still does not hurt. The ENT ordered more blood tests (9 or 10 tubes), The tests he ordered were rheumatoid arthritis, ANA analyzer, CRP, West Nile Titers, Lyme Titers, CANCA, and PANCA. The person who drew the blood told me my results should be ready by 3/14/11 or 3/15/11. I called on 3/14/11 and they told me some of the tests were sent to a specialty lab (not sure if this is normal or not) – The lab that drew my blood is in a very big hospital.
I know this is lengthy but I am trying to give as much information as possible to see if someone can help me because I feel like I am spending a lot of money and getting nowhere and deteriorating more and more everyday. I am at the point that I cannot do anything. When I take a shower, I am exhausted and out of breath. I tried to cook a simple supper for my husband the other night and thought he was going to have to take me to the hospital because I was so sick to my stomach and started sweating so bad and became so out of breath (I also noticed the blood vessels in my face got much worse with this activity). I still have this constant dull pain in my left lung / rib cage area all the way into my back.
Other things to note along the way:
I have lost about 10 lbs since this started (I was 5’7 and 160….I am now at 150)
Lack of appetite (I have to force myself to eat, which I have been doing, but I feel full after a couple of bites)
I get cold sweats and then extremely hot (especially at night)
I do not run a fever (in all of my 38 years of life, I have NEVER run a fever)
I have increasing presence of a Livedo Reticularis type rash?
I use to have bad acid reflux – since these symptoms began I have not had acid reflux at all (not even once)
Dry throat on occasion (not sore though)
Sometimes I get really thirsty
I use to have bouts of diarrhea /constipation – I now only use the bathroom maybe once every four days (stool is soft, not liquid, and has an unusually foul odor, regular color, severe abdominal pain accompanies bowel movements but fine any other time).
Muscle pain in both upper arms
Neck stiffness / swelling
Still feel like I have the flu - all the time
Any advice would be greatly appreciated!!