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Discussion Starter · #1 ·
Hi. I am a nurse, and so have totally ignored my symptoms for years. However, I recently started seeing a new doctor who insisted that I go to a Dermatologist about the psoriasis that I have had for 13 years. The Dermatologist then began asking me about psoriatic arthritis symptoms, and suggested starting Humira.
So I went back to my internist, who thought it would be wise to consult a rheumatologist before starting immunosuppressive therapy. But she did order the tests that the Dermatologist requested. Sure enough, the ANA came back >1:64 homogenous AND >1:640 speckled with a negative RA factor. So, now I am waiting for the rheumotology appointment. The referral went in two weeks ago, but no one has bothered to call me about an appointment. I called to make sure they got the referral, and they did, but they said they forwarded it to the rheumatologist with the next open appointment for review. Whatever that means.
Anyway, I hope to get some insights here, even though I don't have a diagnosis, I have fit the criteria for years.
 

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Hello Mary,

Welcome to The Lupus Site. I am glad you have found us. I wonder if you might have Psoriatic Arthritis which has some features in common with Lupus. Your internist ran the basic screening test and I imagine the rheumatologist will run the full spectrum of blood tests that aid in the diagnosis of lupus and other diseases. The doctor reviewing will likely have an appointment set for you. Your ana result is significant.

I know that my Rheumatologist gets all kinds of referrals. He has said he will rarely take a new patient with an ana of 1:80 or lower unless they have significant other symptoms to alert him of possible lupus. Perhaps this is true for the rheumatologist reviewing your file.

If you haven't looked at it yet I suggest you look at the Lupus Symptoms and Criteria post. It is pinned at the top of the Not Yet Diagnosed forum. There is also a post on the alternative criteria next to the first post I just mentioned.

Do you have any questions?

Take care,
Karen
 

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Discussion Starter · #3 ·
Thanks for the response

One question I have is whether having the two different antinuclear antibody types means anything in particular.
After my ANA test results came back, I really thought about the symptoms that I have had over the years that I have just lived with. I made a list to help me try to clarify things for myself. The spectre of Lupus has come up for me several times in my own mind, but I chose not to pursue it thinking that things will just get better.
I am seriously hesitant to bring this list in to a doctor, although my husband thinks that I should. In my experience in working with physicians, I agree with others on your site that they are much happier when they come up with the diagnosis on their own. I am hoping this rheumatologist will have some kind of a screening form that will cover some of these issues.
I also have mixed emotions about the possibility of having a disease as serious as Lupus. I would almost be relieved because I am living one day at a time, just barely making it through every day.
• Headaches – Since 1987 when I was 17 y.o. Began with severe migraines. Headache characteristics have distinctly changed in last 2 years. Migraines much less severe and less frequent, however generalized headaches have increased in intensity and frequency over last year.
• Chronic tonsillitis / tonsillar impactions - Lifelong - Too many episodes to relate
• Pre-Eclampsia – 22 y.o. - 1982 – emergency C-Section
• Hand tremors - Begain approximately 1985 - First noticed mid twenties. Assumed they are familial tremors. Now increasing in severity first noted in 1997, remained relatively stable until this year, when began dramatically increasing, and now I feel tremulous almost all of the time.
• Miscarraiges – I had two miscarriages between 1988 and 1990
• Pre-Eclampsia – 31 y.o. - 1991 – planned C-Section
• Psoriasis - 1995 - Developed at 35 y.o. after a severe strep throat infection. 3 weeks later broke out in guttate psoriasis (which they also thought might have been Lupus). Treated with PUVA, steroidal creams, methotrexate X 2 years, UVB therapy. Remained severe, covering approximately 80% of my body, until began to improve in 2004 when I changed jobs. Was severe enough that I have my own UV light box at home
• Fevers - First noticed in 1999 – I frequently run fevers up to 102 during, without obvious causes. Always short lived. Occasionally will run low grade fevers but no other viral symptoms develop.
• Asthma
• Rosacea Diagnosed in 2002 – Began creams for rosacea which were not particularly helpful. Skin rashes often resembled butterfly rashes
• Angiolipomas 2001 - Developed multiple angiolipomas over the course of 3 months
• Significant knee, and upper back/chest pain. August 2004 – Began experiencing upper back pain that radiated around rib cage to sternum. Bade enough that I went to a doctor to rule out a heart attack. This prompted an Xray which showed a possible enlarged mediastinal lymph node, which in turn prompted a chest CT scan. Now I have frequent Upper right back pain, often feels like I have a knife between my ribs.
• Pulmonary nodules November 2004 – CT scan showed negative lymph node enlargement, but did pick up two pulmonary nodules. Nodules were followed for two years, remained stable and were attributed to most likely an inflammatory process. CT scan also noted esophageal stricture, and significant multilevel spinal degenerative changes
• Asceptic Meningitis without any preceding illness – June 2005 Hospitalized at UNC for 4 days. They never found any cause.
• Photosensitivity I cannot spend more than 5-10 minutes in direct sunlight without having significantly reddened, irritated skin that appears up to a couple of hours later and lasts the rest of the day
• Visual changes. Have had 20/10 vision until age 40, at which time I needed glasses for reading. Over the last 2 years have had intermittent and transient problems with blurred vision (both near and far) despite prescription glasses. Retinal exams normal. I have checked my own blood glucose levels at time (with my husband’s glucometer) just to make sure that I was not developing diabetes.
• Muscle pain and spasms, I assumed they were due to the number of angiolipomas in my left thigh, I have had problems with occasional muscle spasms in that thigh. Beginning in 2007 I have developed frequent muscle spasms in both legs, feet, and hands, sometimes distorting my hand.
• Tinnitus / Vertigo / dizziness. 2006 I had three episodes of true vertigo. MRI at time ruled out acoustic neuroblastoma. My mother has a history of Meniere’s, although the episodes I had are more likely positional. Dizziness was initially limited to those isolated episodes of vertigo, now I become dizzy if I bend over, or turn my head quickly
• Hand pain / numbness 2007 Over the last 7 months have had increasing problems with hand pain and numbness. I cannot drive to Raleigh without my hands becoming painful, and then going numb. Bilateral hand numbness occurs now every morning, sometimes bad enough that I cannot turn off the alarm on my cell phone for several minutes. Occasionally also experiencing foot pain and numbness over the last 2 months
• Muscle Weakness I feel I have lost strength in my hands, arms, and legs over the last 6 months. I have noticed for the last 2 months that my arms are becoming tired when only brushing my hair, I cannot carry things or walk distances that were no problem for me one year ago. I am dropping things a lot
• Exhaustion - For 6 months I have felt overwhelming fatigue every afternoon. To the point where, again, I have taken my husband’s glucometer to see if I had problems with hypoglycemia. Unrelated to how much sleep I got, how active I am, or diet.
• Fingernail changes - My finger nails have changed a great deal over the last year. Where they used to be relatively smooth, and strong, they now have many ridges, split easily, and are brittle.
• Nosebleeds – I had 3 hard to stop nosebleeds at the beginning of 2007. I have never had a nosebleed in my life prior to these three.
I also had severe mono when I was 11, which put me out of school for 3 months.

So that is the list of anything that may have been, or may be related to an autoimmune disorder.
If nothing else, being able to put this somewhere will help. There is something physically wrong with me. I just hope they put a name on it and treat it.
Thanks for listening and being supportive.
Mary
 
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