View Full Version : Got my first Rheumotoligist appointment

cheshire the catt
09-19-2007, 08:17 AM
I have my first appointment with a rheumatologist next Wednesday. This is a Lupus specialist here in Chicago and very hard to get an appointment with. I obviously have not been diagnosed yet, but I wanted to make sure that I get the most out of this appointment. I normally have to be on my death bed to go to a doctor but my symptoms are just getting really bad. My general internist had me do the 8 panel test, messed up and gave me a test for syphilis instead of the kidney protein check. I didnít even know she was testing me for Lupus until my test results came back. Now I am getting a really hard time from several of the nurses because I am a 29 year white old male. Apparently, I am the least likely demographic to get lupus and I have had a lot of people scoff when I tried to have my referrals faxed in.

My symptoms include:

Patch hair loss
Border line ANA
Rashes all over my back and arms
Extreme lethargy
Joint pain
Joint stiffness
Respiratory issues
Difficulty concentrating ( in an extreme sense)
Pins and needles in my hands and feet at times

How can I get the most out of this first appointment?

I donít go to doctors much and I am worried about looking like a hypochondriac if I remotely come across as well read. Has any one had this issue?

Should I also schedule with a dermatologist over my hair loss and rash? ( Iím vain and losing my hair like this is killing me, I am the lead singer in 2 bands) The only encouragement I found was that Seal has Lupus but then it occurred to me that Seal is bald 

In the areas that I get hair loss I can feel physical pain or tenderness is this normal?

Are there any drugs or things that work to control the hair loss?

Is there a list of questions I should have prepared?

09-19-2007, 09:46 AM
Hi Cheshire :lol:
Welcome to our family where no one will scoff at you or your symptoms! I would say that the first thing you should do is to educate the doctors and nurses who scoff at you when you tell them that you have lupus. They are obviously ignorant to the statistics involving men and lupus!
Here is a website with a brochure that talks about men and Lupus:
Perhaps you can print it up and take it with you to your doctor's appointment. Also, do research about men and lupus and take the results of that research with you.

Most people think of SLE as a disease of women of childbearing age. However, after the age of 50 (approximately the age of the onset of menopause) the percentage of women with lupus falls to 75% and the percentage of men with the disease rises to 25%. Therefore it is a mistake to think of SLE as exclusively a women's health concern. You doctors should be told that, when Lupus affects a man, the symptoms are usually much worse and the disease does not go into remission as easily. Men usually develop renal complications with Lupus as well as Discoid Lupus. Also, more men develop drug-induced Lupus than women. Men with lupus are in no way less masculine than men without lupus, and sexual activity, potency, and fertility in men with lupus does not differ from men without lupus.

Hair Loss:
The hair loss and tenderness in the areas where you are losing hair is most likely due to lupus lesions. I was almost completely bald due to my hair loss! The good news is, the hair almost always grows back!
There are several different lesions with Lupus. I'm not sure which one you are suffering from, but here is some information about each:
* DISCOID LESIONS: discoid means "coin shaped", The scarring coin-shaped lupus lesion commonly seen on areas of the skin that are exposed to light has been termed discoid lupus erythematosus. This term refers only to the description of the lupus lesion on the skin and should not be used to distinguish cutaneous lupus from systemic lupus erythematosus. People with only discoid lesions and no systemic features commonly have no auto-antibodies in their serum and their antinuclear or anti-DNA tests will be negative. On the other hand, people with systemic lupus erythematosus are characterized by the presence of one or more types of auto-antibodies in their blood.

Approximately 20% of people with systemic lupus erythematosus will develop discoid lupus lesions. Also, a small percentage of those patients who only have discoid lupus lesions will eventually develop systemic disease. Occasionally, the discoid lupus lesions may occur in the scalp producing a scarring, localized baldness known as alopecia. These discoid lesions may appear over the central portion of the face and nose producing the characteristic butterfly rash or 'malar rash'.

* SUBACUTE CUTANEOUS LESIONS: A non-scarring, erythematosus, or red, coin-shaped lesion which is very photosensitive, meaning it gets worse when exposed to UV light. This type of lesions occurs in lupus patients who have systemic lupus erythematosus. The subacute cutaneous lupus lesion can sometimes mimic the lesions of psoriasis or they can appear as non-scarring, coin-shaped lesions much like hives.

lesions include several forms of alopecia, or hair loss, which are not related to the presence of discoid lupus lesions in the scalp. Systemic lupus patients who have been severely ill with their disease may over a period of time, develop a transient hair loss in which large amounts of hair evolve into a resting phase and fall out, being quickly replaced by new hair.

Photosensitivity is a common feature of lupus erythematosus. People with subacute cutaneous lupus erythematosus, especially those who have anti-Ro (SSA) antibodies, are even more susceptible to UV and photosensitivity.

I hope that I've been helpful. Please let me know if you need anything further!
Peace and Blessings

09-19-2007, 10:16 AM

Saysusie has a wealth of information. She is a wonderful guide, giving us direction.. to arm us with knowledge about our diseases as we approach our doctors..

Seems like I read they also do a syphilis test to rule that out that as having a positive ANA..Saysusie, is that correct? I am probably way off the mark...

I feel your discontent and if I could I would jeer and scold those nurses. Shame on them. They should know the medical field is about ensuring that the patient feels safe mentally and emotionally in their care too. Tisk, tisk!

Be well,

09-19-2007, 11:11 AM
Who is this "saysuzie person anyway"?????? always coming up with the right answers all the time!!!!!!

yes the "syphilis test" is for lupus, and dont be shocked if it comes back positive

I believe they would only give you a protein test IF you were exibihiting symptoms of kidney disease(hbp) or hypertension

welcome to the club of NON classical lupus(and you will hear this many times)

i wish i could help with the hair loss thing but alas it has gotten a hold of me also,, staying out of the sun could lessen this

sit down for a little while and document EVERYTHING before you go to the doctor and go over your list in its entirerty with them because when you go in and they start throwing foreign medical terms at you, you will forget to tell them something

try not to miss any drs appts from now on, they really need to keep track of you even if you are feeling better

PS saysuzie is the one, sometimes the rest of us are just here as backup, her knowledge probably surpasses most MDs :lol:

cheshire the catt
09-26-2007, 09:19 AM

Maybe I am delusional after watching "House," but I really feel like the doctors don't care and aren't really educated. I don't expect any doctor to figure stuff out in 1 hour with commercial breaks, but I do expect them to look at all the scenario and not just make a quick shove off.

MY ANA tests only had one positive and 1 borderline with the rest negative; based off that she says she doesnít' believe it is Lupus. Hell I am ok with that but I don't think that its fair for her to reach that synopsis in 15 minutes solely based off an ANA in the first visit. (Am I wrong for thinking this?) She seemed really put off that I was well educated, thanks to this forum, and that I looked into alternative diseases where the symptoms maybe similar.

I am fine with not having Lupus, hell I don't want it. I do however really want to find a doctor that isn't making snap calls.

She is repeating all my ANA tests and adding to the pile (hepatitis, HIV, etc), and she wants me to see a dermatologist so when my rash breaks out again there is no wait to get in and get a biopsy. I have one doctor, general internist that says I need to see a specialist and 2 rhuemies that wouldnít touch me. Yet, I get a specialist and she seems to make a snap decision in 15 minutes. She did say that I have a lot of the symptoms of Lupus, and even had a rash present that looked suspicious, but to quote. ďIF you had it it would be visible in your ANA, and youíre a young white male.Ē I have read numerous places that it is fairly common to not have a positive ANA at all.

Please donít misconstrue this as me begging for some illness, I am just gravely tired of going through all this and having nothing to do about it but wait and pay bills.

:mad: GRRRRRR! sorry had to vent.

09-26-2007, 11:58 AM
HI Chestire,

It is called "negative Lupus" when one has Lupus but the test say nay. So my book reads. They wrote a story about an individual who had a negative ANA, but the doctor felt he had Lupus. He order a biopsy of his facial rash and it confirmed it. From a book..The Lupus Book by David Wallace, M.D.

But I also was told by my doctor who now I have reservations about, he said a postive ANA once is all one needs. I relate that to, being pregnant all it takes is a faint line on the stick. A line is a line.

So now what, eh? Well, I would make sure they use a different lab. Or if you find a different doctor ensure he doesn't use the same lab for his/her testing.

Oh, we know you are not begging for an illness. We have been there...through the needle jabs, the unconfirmations, feeling like we are crazy, all in our heads...hypochondriac. We just wanted to know what it is, like you and there isn't anything wrong with that Catt..so worry not about what we think. We get it.

And too, you never have to apologize for venting...vent, vent all you want. We all do it. We understand.

You don't have to be Lupie, I mean have Lupus to be here. We, someone here can help you through the medical grid lock of a finding a diagnose and to give you support when you feel frustrate and need to vent.

Supporting you with open arms, an ear, my experience and a book,

09-29-2007, 06:08 PM
DITTO to everything that Oluwa said. 95-98% of persons with lupus have a positive test for ANA. Therefore, less than 5% of people can have a negative ANA test, and still have lupus!!! Lupus patients who have a negative ANA test usually have a positive test for anti-Ro (also called anti-SSA) or anti-La (anti-SSB). Therefore, if you have some symptoms and signs that suggest lupus, but with a negative ANA test, you should be very carefully evaluated for a large number of conditions that can have a positive ANA test. These conditions (which can mimic lupus) with a positive ANA test include:
* mixed connective tissue disease
* undifferentiated connective tissue disease
* scleroderma
* myositis
* rheumatoid arthritis and several others.
It may take a while before you can get a definite diagnosis because the evolution of these diseases (including Lupus) may take some time.

For a Lupus diagnosis (even with negative ANA), the antibody tests must be accompanied by symptoms, since antibodies alone, with no symptoms, do not diagnose the disease. If you have symptoms plus diagnostic antibodies or biopsy proof of disease, then you will probably be diagnosed with Lupus. If you lack all four, the diagnosis will only be presumptive, even in the presence of illness. This is probably what is happening with you right now :?
Doctors cannot agree on how best to describe patients who have lupus sympts and who lack all four of the unequivocal features. Doctors will say that you have a "lupus-like" illness, "mixed connective tissue disease," "undifferentiated connective tissue disease," and "forme fruste (meaning incipient, or hidden form) lupus". Each of these illnesses have specific and separate meanings and each describes a different form of illness.
Most summaries report anti-DNA antibody in about half of patients, anti-Sm in about one-third, and ANA in 87-94% of patients with unequivocal SLE.
It is a complicated process, even for doctors, to diagnose Lupus. Using ANA titer, related antibodies, complement levels and symptoms to determine a diagnostic certainty is difficult. However, as many as one-quarter of patients referred for suspect SLE fall into the "not-quite-lupus" category, while patients who have any one of the four unequivocal features listed above are given a definate diagnosis of SLE.
Whether to diagnose a patient as having lupus or lupus-like disease is not so much a question of the doctor being right or wrong; it is more a question of the doctor's style, unfortunately. In either case, the treatment options should always be the same. ANA-negative lupus does exist, with a large number of buts, and ifs, and whens. More importantly is the fact that the question itself is not very important. It is never critical to say definitively that a given patient does or does not have lupus. What is important is to evaluate your current symptoms, to put the symptoms into an overall context that includes blood tests, duration of symptoms, other illnesses, and medications, and to develop a treatment plan based on the total information in your case, rather than on a blood test alone. That is what you should insist that your doctors do!

Best Of Luck

09-30-2007, 01:34 AM
Hi cheshire the catt,

I understand your frustration.

Here are some additional labs to be run at a rhumatology lab only: ANA 12 Profile, Anti-Nuclear AB, ANA Titer, ANA Patter, ANA Titer, ANA Patter, Anti-Centromere AB, Anti-SCL-70 AB-EIA, ANTI-SM AB, ANTI-RNP AB, Anti-RO AB (SS-A) EIA, ANTI-LA AB (SS-B) -EIA, ANTI-DS DNA AB by Farr, jANTI-Chromatin AB-EIA, Complement C3, Complement C4, WBC, RBC, MCV, MCH, MCHC, RDW, Platelet, MPV, ESR (sed rate), CRP, Astnew, CPK and creatine.


I would ask for a copy of all labs and place in a binder; my rhumie faxes them to me. A suggestion might be to keep a daily log of pains, lesions and additional problems in order to show the dr what you are dealing with on a daily basis. I usually forget in between 3 month visits, so I type it up in MS Word. I would definately get into a dermatologist with your next lesion in order to get a biopsy. This will further clarify Lupus.

A suggestion might be to google Lupus support groups within your area or a larger metro area. Call the support groups and ask for feedback on their experiences finding a rhumie. I would definately get a 2nd opinion.

I am concerned your apptment was 15 mins. My first rhumie appt was 60 mins and consisted of a verbal medical review, physical exam of lesions and swelling; present symptoms; and finally labs.

I also had hair loss; though found out it was due to being sensitive to sunlight and my thyroid meds had to be lowered. I would ask the internist to run T3, T4, and TSH tests to rule out thyroid. I would find gobs of hair on the counter and floor in my bathroom after brushing it. My vacuum would stop running due to the amount of hair stuck in the roller from losing it. EEK! It's slowed down now thankfully; I have the thyroid under control and always wear a hat outside and under open flourescent lights (ones that are not covered).

I hope the additional labs help clarify. Take one day at a time; and remember you are your best advocate. Stand firm and insistent.

Take care,

Faith 8)