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lcann25
03-17-2009, 05:24 PM
Hello everyone,

I am writing this for my wife, as she was just diagnosed with Lupus today and is very upset and not wanting to do any research right now. Her and I are both in shock, but I know we need to learn about this disease.

Here is my story.

My wife Liz is 26 years old, she has been having knee and hip pain for a while now, so she decided to go to the Doctor and get it checked out. He did the full blood workup and urine tests on her. We went in to get the results after a couple of weeks and he said everything came back normal. So we went on with our lives. Then all of a sudden we get a call from the Doctors office saying he wants to see her about one of her test results that just came back. Confused, because we thought everything was normal, Liz went in today and got the diagnosis. He wrote down the description for her on paper and it reads as this: (Vasculitis) SLE Lupus / systemic lupus erythematosus.

He explained to her what the disease was, and then told her there is nothing that can be done and to come back if she starts to feel worse.

To me this doesn't sound right. Should we not be seeing a specialist about how to treat this? Sitting and waiting for it to get worse does not sound like the right plan of attack to me.

I have also read that Lupus can be misdiagnosed.. Could this have happened?

Should we get a second opinion?

As you can see, we/I have a lot of questions.. Sorry about that. We just want to know what to do from this point, and I thought the folks on this forum would know what we should do!

Thanks very much for your input.

Oluwa
03-17-2009, 06:54 PM
Hello Icann

One word. Insane..who is this doctor and does he have a certificate to practice Rheumatology or is this your primary doctor who diagnosed her. Maybe he feels he can't do anything but he should have referred her to a Rheumatologist.

Did he explain why the diagnose for SLE...meeting the ACR criteria for diagnose...

American College of Rheumatology criteria for a lupus diagnosis
The American College of Rheumatology (ACR) has developed clinical and laboratory criteria to help physicians diagnose and classify lupus. If you have four of the 11 criteria at one time or individually over time, you probably have lupus. Your doctor may also consider the diagnosis of lupus even if you have fewer than four of these signs and symptoms. The criteria identified by the ACR include:


Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
Scaly rash, called a discoid rash, which appears as raised, scaly patches
Sun-related rash, which appears after exposure to sunlight
Mouth sores, which are usually painless
Joint pain and swelling that occurs in two or more joints
Swelling of the linings around the lungs or the heart
Kidney disease
A neurological disorder, such as seizures or psychosis
Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
Positive anti-nuclear antibody tests, which indicate that you may have an autoimmune disease
Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test

Laboratory tests
Your doctor may order blood and urine tests to determine your diagnosis, including:


Complete blood count. This test measures the number of red blood cells, white blood cells and platelets as well as the amount of hemoglobin, a protein in red blood cells. Results may indicate you have anemia, which commonly occurs in lupus. A low white blood cell or platelet count may occur in lupus as well.
Erythrocyte sedimentation rate. This blood test determines the rate at which red blood cells settle to the bottom of a tube in an hour. A faster than normal rate may indicate a systemic disease, such as lupus. The sedimentation rate isn't specific for any one disease, but it may be elevated if you have lupus, another inflammatory condition or an infection.
Kidney and liver assessment. Blood tests can assess how well your kidneys and liver are functioning. Lupus can affect these organs.
Urinalysis. An examination of a sample of your urine may show an increased protein level or red blood cells in the urine, which may occur if lupus has affected your kidneys.
Antinuclear antibody (ANA) test. A positive test for the presence of these antibodies — produced by your immune system — indicates a stimulated immune system, which is common in lupus and other autoimmune diseases. A positive ANA doesn't always mean that you have lupus, however. ANA levels can be elevated if you have an infection or if you're taking certain medications. If you test positive for ANA, your doctor may advise more-specific antibody testing and refer you to a rheumatologist, a doctor who specializes in musculoskeletal and autoimmune disorders such as arthritis or lupus.
Chest X-ray. An image of your chest may reveal abnormal shadows that suggest fluid or inflammation in your lungs. It may also show an enlarged heart as a result of a buildup of fluid within the pericardium (pericardial effusion).
Electrocardiogram (ECG). This test measures the pattern of electrical impulses generated in your heart. It can help identify irregular rhythms or damage.
Syphilis test. A false-positive result on a syphilis test can indicate anti-phospholipid antibodies in your blood, another indication of lupus.The presence of anti-phospholipid antibodies has been associated with an increased risk of blood clots, strokes and recurrent miscarriages.



Did he rule out other diseases that mimick SLE? Rheumatoid Artritis? Sjogren's? Fibromyalgia?

Did he rule in, rule out what type of vasculitis it is? Did he prescribed steroids for vasculitis? Any prescription for Plaquenil....that is usually the first line of defense for Lupus. Not even any NSAIDS?

The questions above are the things you need to be asking the doctor.

The signs and symptoms of vasculitis resemble those of many conditions, which can make a definite diagnosis difficult.



Blood tests. If your doctor suspects vasculitis, he or she may order a blood test that checks your erythrocyte sedimentation rate — commonly referred to as the sed rate. This test measures how quickly red blood cells fall to the bottom of a tube of blood. Red cells that drop rapidly may indicate inflammation in your body.
You also may have a test that measures C-reactive protein (CRP), a substance produced by your liver in response to inflammation.
Your doctor may also check the number of red blood cells for anemia and platelets (thrombocytes) in your blood. Platelets are colorless blood cells that help stop blood loss when you're injured. Some types of vasculitis result in an unusually high or low number of these cells.
Your doctor may also check to see if you have a high white blood cell count, which can signify an infection or inflammation.
In addition, your doctor may check your blood for anti-neutrophil cytoplasmic antibodies (ANCAs) and other antibodies, such as rheumatoid factor (RF) and antinuclear antibody (ANA). ANCA can indicate a diagnosis of Wegener's granulomatosis or microscopic polyangiitis. RF and ANA elevations can be indications of an associated rheumatoid arthritis or connective tissue disease.
Imaging studies. Your doctor may be able to determine whether larger arteries, such as the aorta and its branches, are involved through the use of noninvasive imaging techniques. These include ultrasound, computerized tomography (CT) and magnetic resonance imaging (MRI).
In some cases, though, you may need a more invasive X-ray test called an angiogram. During this procedure, a catheter, resembling a thin straw, is inserted into a large artery or vein. A special dye (contrast medium) is then injected into the catheter, and X-rays are taken as the dye fills these arteries or veins. The outlines of your blood vessels are visible on the resulting X-rays.
Biopsy. Although blood tests and imaging studies can provide your doctor with useful information, one of the best ways to confirm a diagnosis of vasculitis is by taking a small sample (biopsy) of the affected blood vessel. The procedure is performed on an outpatient basis under local anesthesia, usually with very little discomfort or scarring.
The sample is examined for signs of inflammation under a microscope in a laboratory. If there is evidence of scarring, it implies that the condition has been chronic, or long-standing. Treatment may not be as effective in these cases, because the damage has been done and may not be reversible.
Urine test. This test may detect abnormalities, such as red blood cells and increased amounts of protein, in your urine that often indicate a medical problem. If the kidneys are involved, your prognosis tends to be poorer.




Vasculitits does not equate to SLE...

He should atleast rule out other diseases and treat her symptoms..

The four basic rules when seeking a diagnose...
1. Bring support to your appointments because it is hard to stay focused with all the information.
2. Have a health advocate who will fight for you and not just have empathy.
3. Get a second opinion.
4. Become an expert on you illness.

Keep looking for wellness...hugs,
OLuwa

lcann25
03-17-2009, 09:45 PM
wow thanks for the fantastic reply..

I know she did have the ANA test, the Doc. told her it was positive. I am not sure what other tests were done, but I know he did a lot of bloodwork on her. I also forgot to mention in my first post that she has always had very cold hands and feet ever since she was young, Can Lupus cause this?

Oluwa
03-17-2009, 10:01 PM
You're welcome, Icann25....

Raynauds phenomenon causes cold hands, cold feet..bluish tint? Stone white? Very painful?

Raynaud's is a symptom of an underlying condition such as scleroderma, lupus or rheumatoid arthritis...

Hypothyroidism....?

Poor circulation...?

Not eating healthy..dieting...?

Feeling cold, nights sweats, low body temperature are common symptoms of those with Lupus.

I am not diagnosed with any of the above. I have SLE, Sjogrens, RLS, GERD, Fibro and a few other miscellaneous...gastroparesis, dysphagia....and my hands and feet get cold. Times I find no warmth even while buried under a down comforter..


Hope this helps to give you some direction to where to search...

Also note..ANA may be positive in healthy individuals or be induced transiently during acute illness or with infection, and by certain medication. It may also be positive in many other autoimmune diseases including rheumatoid arthritis and autoimmune thyroid disease. ANA results should always be interpreted in clinical context. A positive ANA is only a part of the puzzle in diagnosing Lupus.

Keep looking for wellness..hugs.
Love,
Oluwa

tasha
03-17-2009, 11:20 PM
oluwa pretty much covered it... but i will just add that your wife should immediately schedule an appointment with a rheumatologist, and bring copies of all the lab work with her to the appointment. the rheumatologist will probably order more lab work as well. i originally went to my general practitioner when i first started experiencing symptoms and he misdiagnosed me. my rheumatologist diagnosed me with SLE. and now i'm in the process of seeking out yet another opinion, even though there's just about no doubt in my mind that my rheumatologist is correct after all my research and lab results. i'm mostly just seeking another opinion in regards to treatment, and to ease my mind further.

tell your wife to join this message board because the people here are really great and have really helped me understand what i'm going through better. i was in the same position as she is too. i'm only 23, and i was so upset and depressed after finding out i had lupus and i didn't want to research anything, mostly because i was afraid of what i would find out. but i'm so glad i found these message boards.

lcann25
03-18-2009, 05:26 AM
Thanks for the advice everyone. I would like to take her to see a rheumatologist as the next step, however, I don't know how to find one. I live in a small town in Canada and when I look up rheumatologist in the phone book there is nothing, I am not sure where else to look. Should we maybe just try another doctor and tell him that she was recently diagnosed with SLE from another doctor and we want a second opinion? I am just not sure what to do from this point.

mountaindreamer
03-18-2009, 06:20 AM
hi Icann,

so sorry to hear about your young wife. this is an initially devastating diagnosis, and i know she is very frightened. Tasha gave great advise to join this forum. there is so much knowledge here, and i continue to learn something each day. Also, so many people have found different ways to address the many symptoms, and provide ways to get relief from these symptoms.

of course, as she always does, Oluwa provided you with a wealth of information on lab tests, and diagnosis. she is a cherished member of the forum.

concerning the dr. you need to find a "good" rheumatologist. Many people on the forum have been able to get into hospitals/clinics who specialize in lupus and other autoimmune diseases. If you could find one (i know of one in new york), it would probably be worth your trip to a medical facility for diagnosis. I went to the Mayo clinic, they then worked with my local dr. on treatment. Also, go online to lupus foundation of america web site, and search for local chapters.....they often have info on medical facilities in various areas.

you need to find a rheumy.....and a good one....if you don't get good vibes from the dr., then find another one. this dr. search is probably the most difficult part of life with lupus. there are so many on the forum who , after many years, still have not found a good dr.

your wife is very luck to have you.....thank you for being her advocate. lupus diagnosis is devastating, but she can learn to live with the disease.....especially with you by her side. and yes, many people start out with a positive diagnosis, then it is changed (even years later). However, remember, the lab tests can vary depending on medication and whether or not a flare is going on.

please call on us for anything...there are so many people here who can help. I don't know what part of canada you live in, but i know we have some members from canada.....maybe you all live close.

Grime
03-18-2009, 06:34 AM
Welcome Icann,
What is the largest city near you? Even if you have to travel it would be best to find a rheumatologist. I have to travel 4 hours to see the doctor and I live in Texas.

http://www.lupus.org (http://www.lupus.org/) This is the link to the Lupus of America site. I don't think they will recommend a doctor but might tell you where one is at near you.

rob
03-18-2009, 10:01 AM
Hello Icann25,

Welcome to our group. I see you've already been welcomed, and have recieved solid advice that I can't really add to from other members. I just want to tell you that Lupus can be controlled, and many, many people not only survive, but thrive despite the disease. It's by no means an end. I hope you can find the answers you need in order to help your wife treat this. Your coming here in support of her is a rare gift that many spouses or significant others cannot, or will not do. Your support and understanding will go a very long way towards helping her cope with all of this. Once again, welcome.

Rob

lcann25
03-18-2009, 10:22 AM
Thank you everyone for the very good advice.

We live in Saskatchewan, The middle of Canada, And there is a doctor shortage here, and what medical care we do have is not great. That is one of the reasons we are so scared. Also, the thing that scares us the most is fear of the unknown. We don't know enough about this disease to not be scared. We are reading things about hair loss, kidney failure, seizures, and even death. Sounds extremely scary. We are going to try and see another doctor this weekend and see if they will run the tests again, but we dont really know what to ask for to get a definite "yes you have lupus" and be able to believe it.

Oluwa
03-18-2009, 11:27 AM
Icann...I think you were asking in your last statement what tests to ask for, right? Wrong?

Below are tests that are used to diagnose Lupus, rule out other diseases...but again note. These are only a part of the diagnosing tools. You have history of symptoms. And all symptoms, positives tests results are accumulate, not all at once, so the history is important.

It is important to all of us, ourselves to have a definite answer, a diagnose, but even if we do not meet the criteria for a certain disease they can still treat the symptoms.

Blood tests used to diagnose and monitor lupus..click on each one for indepth information...also each lab ranges or how it is written differes from lab to lab. Ask what lab your doctor is using and you can research the results more indepth by googling the labs name...


Albumin (http://www.uklupus.co.uk/albumin.html)
ANA (http://www.uklupus.co.uk/ana.html)
ANCA (antineutrophil cytoplasmic antibodies), P-ANCA (perinuclear) C-ANCA (cytoplasmic) (http://www.uklupus.co.uk/anca.html)
Anti-Cardiolipin (Anti-Phospholipid) (http://www.uklupus.co.uk/anticard.html)
Anti-DNA (http://www.uklupus.co.uk/antidna.html)
Anti-Ro/SS-A (http://www.uklupus.co.uk/antiro.html)
Anti-Sm antibodies (http://www.uklupus.co.uk/antism.html)
Blood Urea Nitrogen (BUN) (http://www.uklupus.co.uk/bun.html)
CBC (http://www.uklupus.co.uk/cbc.html)
Complement studies (http://www.uklupus.co.uk/complem.html)
Cholesterol (http://www.uklupus.co.uk/chol.html)
CPK (http://www.uklupus.co.uk/cpk.html)
Creatinine (http://www.uklupus.co.uk/creat.html)
Creatinine Clearance (http://www.uklupus.co.uk/creatc.html)
Differential Neutrophils, Lymphocytes, Monocytes, Eosinophils, Basophils (http://www.uklupus.co.uk/differ.html)
ENA (Extractable Nuclear Antigens) (http://www.uklupus.co.uk/ena.html)
Erythrocyte Sedimentation Rate (Sed Rate, ESR) (http://www.uklupus.co.uk/esr.html)
Immunoglobulins (IG) (http://www.uklupus.co.uk/ig.html)
Iron (http://www.uklupus.co.uk/iron.html)
Rheumatoid Factor (http://www.uklupus.co.uk/rheumf.html)
White Blood Count (WBC, Leukocyte count) (http://www.uklupus.co.uk/wbc.html)

Regular blood tests are essential to monitor how active the disease is and whether treatment is working once prescribed.


Full blood count
Sedimentation rate
Kidney and liver tests [creatinine, liver enzymes]
Tests for protein in the urine...
Antibodies to double stranded DNA - rising levels often predict a relapse
Complement proteins [C3d]

We also need to be monitoried for side effects of drugs..some of us monthly, every two month, three, six or even just once a year. Depends on your disease and drugs you are dosing with. I was every two months and now every three months...cool, eh...

A few of the common drugs that should be monitored and for...
Prednisolone and other steroids
- Glucose
- Fats in the blood
- Full blood count (toxic to lymphocytes)
Azathioprine (Imuran)
- Can damage liver - regular liver enzymes tests (can require a biopsy)
- Toxic to bone marrow - regular full blood counts to look at white blood cells (can require a bone marrow biopsy)
- Antibodies (can become very low)
- Enzyme test now available that predicts whether side effects are likely with azathioprine (thiopurine methyltransferase - TPMT)
Cyclophosphamide
- Toxic to white cells - regular full blood counts
- Antibodies (can become very low)
- Urine (can cause bleeding from the bladder)
Cyclosporin and Tacrolimus
- Very powerful immunosuppressives
- Can damage kidneys and liver - check kidney and liver function
- Blood levels can be measured in the laboratory to help adjust dose

Hope this helps....ask if you need anything else. I enjoy researching..helps to keep my mind off my disease...so in the end we both feel good, eh?


Happy Wednesday...hugs.
Love,
Oluwa

Oluwa
03-18-2009, 11:39 AM
Hi Icann25...

Lupus Erythematosus Society of Saskatchewan (L.E.S.S.)

e-mail: less@sasklupus.com
Box 88, Royal University Hospital
103 Hospital Drive

Saskatoon, SK S7N 0W8

1-877-566-6123



Check out these links a Lupus Society in your Providence...

http://www.sasklupus.com/index.php
http://www.sasklupus.com/links.php
http://www.sasklupus.com/sleinfo.php

L.
O.

mountaindreamer
03-18-2009, 06:15 PM
hi Icann

the fear you are experiencing now is real. you read the horror about symptoms and mortality of lupus. and you know what.....all of it is a possibility....but not always. I talked with a lady the other day whose mother-in-law is 90 and has been a life-long lupus surferer. as most explain it, "she has her good days and her bad days"./....but i was thrilled to hear that she is 90.

please don't let it hit too hard if you don't get a diagnosis this weekend. this is a difficult disease to diagnose.

remember, we are here for you if you have any further questions.

best of luck to you both.....sounds like you have a great team.

lcann25
03-18-2009, 06:57 PM
Well, tonight Liz seems a little more willing to talk about things, I showed her the list of things to check for that Oluwa posted, and she recognized quite a few of them as things he tested for including CBC, Rheumatoid Factor,
White Blood Count. She is not sure about what else may have been tested, but there was a bunch of stuff and they all came back normal except for the ANA which came back positive. So this may have been what led to the SLE diagnosis. However, I still don't undersand the Vasculitis diagnosis. From what i have read, you can't test for that with just a blood test.. am I wrong? but even so, it is looking more and more like the SLE diagnosis is probably correct, given the positive ANA test and her other symptoms of painful joints and feeling very cold most of the time. We are still going to get another opinion, but I think we are starting to realize that she may very well have SLE.

tasha
03-18-2009, 10:39 PM
i completely understand your fear. i was very scared too when i first found out. i got pretty depressed.

but i assure you, it passes. i am no longer scared for my life and i'm no longer depressed. i'm back to my original giddy self :) i just see it now as a challenge and an opportunity to take the best possible care of myself that i can. you and your wife will take care of it, and do whatever you can to keep her healthy. and your efforts will prevail.

the initial scare after any diagnoses always passes... just remember that :)

ashleybaby715
03-19-2009, 04:58 AM
all i can say is have your wife go to a rheumatolgist. they will do whats necessary to get your wife her proper diagnosis!
everyone on here pretty much covered everything else lol.
also have your wife join on this site!
we can be very helpful and supportive!!
i wish you both the best!

ewillies
04-01-2009, 11:58 PM
That was a horrendous doctor. My wife has had Lupus for 16 years now. It must be managed with steroids if it is very active but no matter what she must be monitored to ensure at the first onset of any flare on an organ it can be nipped. See a new doctor. The system is currently corrupt in that many insurance companies pay doctors not to refer patients to specialists.

KATROACH1972
04-02-2009, 08:45 AM
I just want to say we are all here for the both of you! Evryone else got the rest of the important stuff! God bless Kathy

lcann25
04-05-2009, 05:30 PM
I want to thank everyone for the kind words once again!

I wanted to ask a question, not sure if this is related to lupus or not..

My wife never wears socks, it bothers her to have things on her feet. Tonight she was standing in the kitchen and felt a wet sensation on the top of her big toe, when she looked down the toe was covered in blood. I immediately took a look and wiped it off, and it looks like a very small slit where the blood is coming from, with a bump around it. She swears she didn't bump her foot on anything, that it just started bleeding. Is this something we should see a Doctor about?
thanks

mountaindreamer
04-05-2009, 06:13 PM
hi Icann25

yes, go to a dr.....that is my vote. I am not familiar with what you are describing. So, this may be something that happens to some people, lupus defies predictability. however, if others are unaware of this, please go to dr.

if your wife is frightened, you might want to go to the dr. and let him ease her fears. (if he is a decent dr)

i hope she is not in pain,

lcann25
04-05-2009, 07:19 PM
It stopped within 5 minutes of it starting and has been fine for a couple of hours now, and there was no pain, so we will watch it tonight and see what happens, if it starts up again, she will see a Dr. in the morning.

mountaindreamer
04-05-2009, 08:04 PM
thanks icann25 for keeping us posted. let us know in the morning how she is doing.

good night, get some rest, you and your wife deserve it.

lcann25
04-06-2009, 05:14 AM
she seems fine this morning. The only thing we can think of is that somehow she bumped it on something without knowing and it started bleeding, but of course being newly diagnosed, we panic.

lucky7
04-06-2009, 02:25 PM
Hi Icann! Just wanted to say so sorry for what your wife is going through but shes very lucky to have you! My husband is VERY supportive and he goes to EVERY dr. appt i have. Phyllis said it earlier,its good to have that other person there because its easy to forget things, and its a great idea to have them jot things down while talking to the dr. I also wanted to say about her toe that i get cuts and scratches all of the time that i have no idea how,when or where they occured. Its VERY scary to have your body doing things its never done before from head to toe. Im glad her toes ok now:fing02:! Unfortunately she will be experiencing MANY new symptoms so what i say to people that's helped me is to chart EVERY symptom,what was happening when it occured,if she ate anything different than usual,were there any certain smells she was around, did she overexert herself, was she in the sun, was she stressed about anything and dont be affraid to go to the dr for anything that you or she feels is WRONG or ODD. Our bodies intuition is usually dead on. In time hopefully the two of you will see certain patterns that will help her to avoid flares or at least have a heads-up to one coming so she can rest to calm it. I wish you both well and once again, it's wonderful you are there for her, that will help her more than she knows.:smlove2:

emilbear
04-08-2009, 08:20 PM
hello icann! i think everyone has provided all the general lupus info you need. i thought i'd let you know that when i was diagnosed i had symptoms very similar to those that you've said your wife is having. i'm creeping up on 28 now but i was diagnosed with SLE about 7 years ago when i was an undergrad. since i was 15 or so parts of my feet would go numb for weeks to months at a time. then, in my early 20s i, like your wife, suddenly developed deep, persistent pain in my knee. i also had needle-like pain in my feet that soon turned into sharp pain that felt like electric shocks shooting up my leg from my feet. my feet were also very sensitive to touch-- i couldn't handle blankets, socks, or people touching them. but some areas of my feet were still lacking feeling so i could bump my foot on something and either not even notice OR have awful pain. i also have circulation problems and was tested for vasculitis. there are many bloodtests for vasculitis but my doctors would not diagnose me until they had performed a skin biopsy. i thought this would be helpful info for you and your wife because even though it looked like i probably did have vasculitis, the biopsy showed that i did not have it. my docs (a neurologist and a rheumatologist) also did a whole bunch of tests in addition to blood tests before they would diagnose me-- the main one being a lumbar puncture to make sure i didn't have multiple sclerosis.

my docs have told me i have "atypical" and/or "irregular" lupus (as if there is a typical lupus!). turned out that i have nerve damage in my feet, raynaud's, livedo reticularis (purple blotchy legs and arms related to circulation), fatigue, joint-pain, sun sensitivity, and migraines. the main meds that i take to regulate my lupus are imuran and plaquenil (steroids did little good for me), which i've been taking since i was diagnosed. the good news is that even though it sucks to go through the diagnosis process and finding the right meds, you can improve and live at least a relatively normal life. there is a lot that can be done to help your wife. i'm MUCH better now than i was 7 years ago and my nerves are slowly regenerating/repairing themselves (had a nerve biopsy too). respectful, helpful support from loved ones, especially partners, can make all the difference in dealing with this and it sounds like you're doing a great job supporting her. i wish you both the best and i hope you can see a rheumatologist soon.

sorry that was a really long post!

mountaindreamer
04-09-2009, 05:16 AM
hi emilbear,

welcome to the goup, i am glad you found us. there are several members who are in their 20 and 30, and they have been learning ways to live with lupus for several years now.

thank you for the great information you provided ICANN, you provided guidance that he will be able to use while helping his wife.

again, welcome, i look forward to more communication with you.

emilbear
04-10-2009, 09:04 AM
thanks for the welcome, mountaindreamer!

lcann25
04-14-2009, 08:06 PM
Hello Everyone!

Well I thought I better update as it's been a few days since my last post. We went back to the clinic where the Doc made the diagnosis, but saw a different Doctor because the other Doctor was not in, and asked to be refered to a Rheumatologist and he agreed. So he is going to send the results off to him and we are waiting for a call/letter with an appointment for her. This could take months, although I hope not!
I will update whenever I can. Thanks again!

froggal
04-14-2009, 10:40 PM
I think that it is so awesome that you are so involved in what your wife is going thru. I have been given two wonderful pieces of advice when I was first diagnosed. First, find a doctor that makes you comfortable and that you have confidence in, even if that means going to see 100 different drs until you find THE one. Second, have a great support system by surrounding yourself with supportive friends and family. It sounds to me like you have got both of those covered!! Everything else with fall into place. (not always when we want it to but it eventually will) Hopefully being here with us will help you and your wife. This has truly been my support system. Welcome and please know that you always have a friend in me!

mountaindreamer
04-15-2009, 06:41 AM
hi Icann25

hopefully your appointment with a rheumy will be expedited and not take too long. How is your wife feeling? Is the current dr. starting her on any meds, or treatment options? (Sorry if you have already provided this info - i can't remember)

please keep us posted, and call on us for any questions. You are always welcomed here....you are now a part of the circle of cyber friends.

lucky7
04-15-2009, 11:54 AM
Hi Icann! So gald to hear things are coming along!!! WOO HOO to that!:thumbs-up:

lcann25
04-16-2009, 03:22 PM
She is not on any medication at all, other than Advil for her aches. The Doctor did not suggest any meds, nor did we ask for any because we don't know what to ask for. Her pain is not unmanageable at this point.

mountaindreamer
04-16-2009, 05:45 PM
hi icann25,

first, i am so glad that your wife's pain is manageable...afterall, that is what life with any chronic illness is about, so you have already learned this.

Did her dr. call with a referral? you may have to politely hurry the process along.

keep up the good work, you are being an outstanding advocate for your wife. i hope you are finding time to be good to yourself, it is very important for the care giver to have time to focus on something other than the illness that has invaded the home.

lucky7
04-17-2009, 11:22 AM
I DITTO what Phyllis said! Very nice post Phyllis! How sweet you are! :cute:

lcann25
04-29-2009, 05:47 PM
Update:

Saw the Rheumatologist today and he looked over her test results, then did a complete joint flex test to see what hurts and what doesn't hurt, and said he does not think it is Lupus. He said all the bloodwork that was done with the exception of the Positive ANA was completely normal, even the white cell count was normal. He also stated that there was no titer results with the ANA test he was given, so he is running the test again in his own lab. But as things stand right now, he does not believe it is Lupus. So now we are in limbo playing the waiting game.

Will update again once we know more.

lucky7
04-30-2009, 01:18 PM
AWWW< HI Icann. Sorry to hear you're in limbo once again! :skeptical: I understand COMPLETELY! I took some time off since last fri. I was drained from an appt i had with my dr. She said about 3-4 weeks ago, its Lupus and R arthritis, then on my fri appt she says "i dont know where to go from here, now your bloodwork is fine" UGH! It showed up "not fine" about 4 times now. She evevn looked at my pitted nails,swollen fingers and and red joints. Still said "no" cuz your recent blood showed up fine. So i just want you to know it happens alot and im so sorry you and your wife are feeling the sting of it also. We are here to listen and understand no matter what the outcome! Good Luck!!!! :cute: