View Full Version : F/U with PCP--need some guidance

03-12-2009, 08:29 PM
Yesterday afternoon I had a routine follow-up with my PCP, an internist that I've seen for some 6 years. I hadn't seen her since mid-December, right before the SLE and SjS diagnosis.

She asked about my current symptoms and I told her it's mostly the dry mouth and eyes and fatigue/brain fog that are most bothersome. She reviewed my medication list. Finally, she said that she doubts I have SLE because I have no organ involvement. She gave me the name of two local rheumy's (mine is some 2 hours away, but I was referred to her by my motility specialist) and STRONGLY suggested I seek a second opinion. She said that Prednisone is a strong drug and doesn't believe it's warranted in my case. Told the PCP that I was comfortable with the SjS symptoms because of how dry I am, but I am having difficulty accepting the SLE diagnosis because I have very few of the "normal" signs of SLE. But, because I respect my rheumy's experience and reputation, I can't say I don't believe her diagnosis--I'd just like more tangible "proof" besides the labs (I hope that makes sense).

Finally, she listened to my heart and asked how long I'd been wheezing? I have never had any symptoms of asthma or the like. I haven't had a cough/cold in a long time. In January, prior to starting any new meds, I started having a dull ache in the upper left side of the midline of my chest. When I walk from the transit bus stop to my office, four blocks, I notice a tightening in the chest and blamed it on cold weather. In the evening I would have the dull ache when I was watching TV. I didn't bring it up previously because it doesn't happen all the time and I don't want to be perceived as a hypo-which I told the PCP. PCP said that I don't need to be worried about appearing like a hypochondriac--and just what I need--another diagnosis to add to my list :(

Anyway, she wrote me a prescription for an inhaler (albutitrol), 2 puffs, 4 times daily, as well as an order for a chest xray. Her assistant came in and did a peak flow meter-200/200/250 and O2--96%.

I had the xray done today at lunch and should have the results--hopefully--by tomorrow. I need some input as to what you on the Forum think might be causing the dull ache/tightening; should I get a second opinion; how in the heck could I suddenly develop asthma (if that's what it is) at 44 years old? I have never smoked, although both of my parents did (not mom any longer :), but dad still does--just not around me).

Now, with the extra special rash I found on the underside of the breast when I woke up this morning, I feel like I'm falling apart. Turning 40 was the start of all this and mother always told me that "life begins at 40." Needless to say, I'm getting a bit discouraged.......

03-12-2009, 09:31 PM
Hi Bonus Mom from central Cali,

I have asthma as well, but I have also had pleurisy. My chest will ache with asthma or bronchitis but not on the left side. Check out the following and see if it applies. I would get into the rhuemy after you get the results. I developed pleurisy from physical movement. Definately see the rhuemy please and keep us updated.

What is pleurisy?
Pleurisy is swelling (inflammation) of the thin layers of tissue (pleura) covering the lungs and the chest wall.

The outer layer of the pleura lines the inside of the chest wall, and the inner layer covers the lungs. The tiny space between the two layers is called the pleural cavity. This cavity normally contains a small amount of lubricating fluid that allows the two layers to slide over each other when you breathe.

When the pleura becomes inflamed, the layers rub together, causing chest pain. This is known as pleuritic pain.

Pleurisy is sometimes called pleuritis.

What causes pleurisy?
In young, healthy people, an infection of the lower respiratory system by a virus or bacteria may cause pleurisy. Pleurisy usually lasts a few days to 1 or 2 weeks. In very rare cases, the virus or bacteria may spread and cause pleurisy in others.

Other causes of pleurisy include air leaking into the pleural cavity from a lung (pneumothorax), injury to the chest (such as a broken rib), tuberculosis or other infections, or a tumor in the pleura.

Other conditions may also cause pleurisy. These include rheumatoid arthritis, lupus, sickle cell crisis, pulmonary embolism, or pancreatitis. Pleurisy may also develop as a complication of heart surgery.

What are the symptoms of pleurisy?
The symptoms of pleurisy are chest pain and difficulty breathing. The chest pain usually starts suddenly. People often describe it as a stabbing pain and it usually gets worse with breathing. The pain:

May always be present, but it usually gets worse when you breathe in. You may avoid breathing deeply to prevent the pain.
Usually is on only one side of the chest.
May extend to a shoulder or the belly.
Is usually worse when you cough, sneeze, or suddenly move.
May ease when you hold your breath or press on the painful area.
But this type of chest pain can be caused by conditions that do not affect the pleura, such as chest muscle strain and costochondritis.

If a viral infection is causing your pleurisy, you may or may not have common viral symptoms, such as fever, headache, and muscle aches.

The inflammation of the pleura sometimes causes fluid to build up in the pleural cavity (pleural effusion). You may have less pain after this happens, because the fluid prevents the two layers of the pleura from rubbing together. If there is a large amount of fluid, it may prevent the lung from expanding when you breathe in. This can make it hard to breathe. Other symptoms of pleural effusion include fever, chest pain, and a dry cough.

I hope this helps.

Take care,


03-13-2009, 02:28 PM
hi bonusmom,

dull pressure in my chest has often served as the first sign of a flare, and i understand that several of our members suffer with asthma, and some chest discomfort. Have you been tested for fibromyalgia? two of the most commonly active trigger points are on either side of the chest, in the soft tissue area just below the collar bone.

i too find myself wheezing sometimes, but i have not addressed with dr. I have atrial fibrilation, so i guess i should let them know. sometimes, i agree with you, i feel like i just have too many things to tell the dr. about all of them.

i do think a second opinion is a good idea....especially if your pcp has someone in mind.

take care, let us know what happens,

Angel Oliver
03-13-2009, 02:51 PM
If you feel unhappy get a second opinion. I do have asthma, had it for 20 years, but until a year ago never had an attack. Then i had a tight chest, which a Doctor told me was anxiety.So as a cough developed i ignored it and began to take honey and lemon. When i lay flat on my back, my chest would get tighter, the cough would get violent....but still carried on with good old honey and lemon :) My lungs were struggling and burning.Ive never struggled to breath like that ever.A year ago or just over, it was a Monday, the cough was so bad,my chest was like a bear was hugging me and i was wheezing bad.I went to the Doctors.He yet again said 'your chest is clear'. Yet again i felt...he thinks im a hypo.
Luckily that same week on the Friday i changed Doctors. HE WENT MAD!!! Not only did i have a chest infection i had been having a severe asthma attack. In the night i could not breath in any air and breathing out set of the cough. My peak flow i think that morning he saw me was 100.It should have been 450 plus. I was put on steriods, 2 inhalers and told...if i have ANY attack to dial for emergency!! I was going on holiday.The Doctor said you are not travelling anywhere!
See how 2 different Doctor gave me such TOTALLY different diagnosis. I now have new pills, 2 inhalers, steriods and a nebuliser. So far so good ive not had a bad attack now since before Christmas. The new Doctor is very good with Asthma and saved my life.Yet with everything else doesnt seem interested at all.
He told me recently, more and more people are getting asthma and they are not 100% sure why. A study is going on here. For me it turned out, even though ive always had pets, i suddenley became very allergic to cats and dogs and birds.Then house mite and dust is a major one. The week my asthma got very bad, i was having up to 5 major attacks a day......Soosie had decided she wanted to now sleep in my room.She is a cat.This was my trigger. Oh n certain pollen....you know tree s i forgot the word. But anyone can suddenley get asthma.BUT it CAN be treated and brought under control.
So, if you feel unsure if its asthma....wait for the results....but no harm in getting a second oppion ever. Dont be intimidated by Doctors.We pay their wages but we ARE the patient.If you want names of my meds just ask.But if its asthma, it can be controlled.
Hope i have helped a little.

sick n tired
03-13-2009, 10:05 PM
Hey Bonus mom,

pericarditis can cause those symptoms, also...or what I had was a pericardial effusion...that is basically water around the heart...the other, pericardial effusion if a swelling of the sack around the heart. Usually it is not dangerous, though.
You should get another opinion, though...after all the doctor you are talking about is a pcp. Not all lupus is just organ involvement...and you now have that rash, too. Perhaps you should have that biopsied.