Itchy lungs, slippery fingers?
Posted 24 June 2008 - 02:51 AM
I haven't posted in a while, but I have recently had two things occuring that I wanted to get some ideas about.
I started having a heavy feeling in my lungs, a feeling that I needed to stop and take a deep breath but not breathless as in panting. Now, it feels as if my lungs are itchy. I also have had higher blood pressure than normal for me, not "high" enough to warrent medication. Used to be 100/60 to 110/70 and now it is more like 138/80 - 130/70. That bothers me. I went to the doctor, she prescribed Singulair. I'm not going to take it because of the horrible side effects listed. I'm already slightly depressed, I don't need to start thinking suicidal thoughts.
Also, my fingers are still puffy in the morning and shiny. Later in the day you would think they are wrinklly and "deflated". I was playing cards with my family the other day, and I couldn't separate the cards. They felt sticky, my fingers kept sliding but the cards wouldn't separate. I had to deal the cards from the stack on the table with two hands in order to separate the cards. No one else thought the cards were sticky. My lap top has a touch pad mouse and I sometimes find it hard to get it to register my finger sliding on it. I have the same thing happen if I'm wearing a bandaid, so I know my fingers are losing the ridges of my finger prints.
I went to a different rheumatolotist, who actually specializes in Lupus. She practices with some sclero specialists so I think she has delt with this somewhat. She didn't see any definite skin thickening so at this time, she says I don't have Scleroderma officially, but she did say that I could have some type of sclero varient or MCTD. I have slightly positive ANA. She mentioned that if she had been able to order tests she would have ordered something, but she didn't tell me what.
Any one else with "itchy" lungs (my best lay-person description of what it feels like)?
PS. Shoulder is finally getting better enough to begin playing violin again, so I'm back to Fiddling. I'm going to keep up with the mandolin, but I'm an Irish Fiddler at heart.
Posted 24 June 2008 - 04:04 AM
Why can't she order tests? If there not done at her office, she can send you for blood work.
It is what it is...........
Posted 24 June 2008 - 05:21 AM
The best way to ease your concerns is to see another pulmonologist.A chest x-ray or ct of the chest should rule anything out.You can't really ask for it unless the pulmonologist feels you really need it.The pulmonologist will also use his stetescope and hear for rales or other abnormal sounds in the chest and back to rule anything out.
Your itchy lung symptoms don't sound too alarming so I would not be too concerned.
However, If you're having symptoms like shortness of breath then I would definitely be concerned.That may indicate pulmonary hypertension or early signs of an inflammatory process.Most likely interstitial lung disease.Its common to occur in connective tissue disorders like scleroderma,MCTD and rheumatoid arthritis.Its a restrictive process so I don't think singular will help.Singular will only help in obstructive disorders like having difficulty expiring air such as asthma.Restrictive disorders such as interstital lung disease are characterized by having trouble breathing air in.
Posted 24 June 2008 - 05:27 AM
My insurance company wasn't going to pay to have me see a specialist through UW-Madison Health. Then, they finally agreed that I could see a Rhuematologist through UW health, although they picked who I would see. They picked the doctor that specializes in Lupus, not Scleroderma. They also said I had to have an appointment before June 30, which only came about because I called and pleaded with the scheduling person. They also put in the provision, that I couldn't have any lab work through UW Health, and only one follow-up with that doctor.
She stated, that while I have some symptoms of Scleroderma: GERD, trouble swallowing, dry eyes etc. (thinks I have Sjogren's and said I should get lip biopsy), puffy fingers, positive ANA, Raynaud's. She didn't see any skin thickening at this time. I forgot to tell her that my forhead line (wrinkle since middle school right in the center of my forhead) is fading. I think the parenthasis on the sides of my nose/mouth are also fading slightly. So she told me in person that she didn't think I had scleroderma.
In her notes that she sent to my other rheumatologist, me, and my primary care doctor, she said that I might have a sclero varient or connective tissue disorder and should be monitored.
Posted 24 June 2008 - 06:18 AM
Have your general practitioner or other rheumatologist run the blood work. Tightening of the skin is only one diagnostic. Take CREST for instance which is identified per The Web MD http://www.webmd.com.../crest-syndrome.
The â€œCâ€ stands for calcinosis, where calcium deposits form under the skin on the fingers or other areas of the body. The â€œRâ€, stands for Raynaudâ€™s phenomenon, spasm of blood vessels in the fingers or toes in response to cold or stress. The â€œEâ€ represents esophageal dysmotility, which can cause difficulty in swallowing. The â€œSâ€ is for sclerodactyly, tightening of the skin causing the fingers to bend. Finally, the letter â€œTâ€ is for telangiectasia, dilated vessels on the skin of the fingers, face, or inside of the mouth.
Usually only 2 of the five symptoms of the CREST syndrome is necessary to be diagnosed with the disease.
It is what it is...........
Posted 24 June 2008 - 04:48 PM
The variant you might have could be Systemic Sclerosis sine Scleroderma (SSc sine Sc). You can get any and all of the things that go along with the other forms of scleroderma, but as the name suggests, you just don't have the skin thickening.
It took me a couple of years to get diagnosed and in the meantime I was misdiagnosed with pneumonia twice and asthma. (Nope, no reactive airway disease at all~) I had been sent to a rheumatologist but I think he wrote off the possibility of scleroderma because of my lovely supple skin. ;-) The aches and pains were either PTSD or fibromyalgia~ Uh huh.
What I do have is SSc sine Sc, with ILD, PAH, metabolic bone disease and GI problems.
How did I eventually get diagnosed? I was fortunate enough to be able to go to a very good medical and research center. They did a chest CT (found the ILD), chest X-rays (found spinal Fx's on that one), lots of GI tests, normal and bubble echos and eventually a RH cath (which found the PAH). The rheumatologist checked for nailfold capillary dropout (used a strong light and microscope) and it was there. Given that I also had a high ANA with the 'right' pattern, teleangectasias and Raynauds, he made the diagnosis.
Keep after the doctors! Take literature in for them to read... Sometimes they need a bit of educating. Best of luck in a truly frustrating situation.