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Posted By : Dustmite - 1/15/2017 1:32 PM
Hi, I am new to this site and don't normally ask questions on the internet. My primary care doctor recently took multiple blood tests, poured through 20 years of my medical records and told me I have lupus. Last summer I was diagnosed with stage 3 kidney disease, have had multiple bacteria infection s since last April. I have been hospitalized three times since the end of April last year. In August I had a bad case of shingles. A few weeks ago I found out that what I thought was a bladder obstruction is a bladder that no longer works. I am going in for interstim surgery to help that. I have kept a journal since I was diagnosed with lupus. I have fevers almost daily between 99-101 degrees. I have multiple joint pain, mouth sores, a red rash across my cheeks and nose. Nausea and vomiting every few days. My fingers turn bright white when they get cold. I am often exhausted and feel like I have a bad case of the flu. I also have arthritis and hypothyroidism. What I'm afraid of is that when I go to see the rheumatologist for my first visit that he will tell me that I am too old to have lupus. This happened two years ago when I saw a rheumatologist with the red rash across my cheeks and nose. I am 56. Does this sound like lupus or something else. It was a relief to finally get a diagnosis. I have been sick for a long time.

Posted By : Lynnwood - 1/15/2017 1:54 PM
There is no such thing as "too old to get Lupus". If a rheumy tries to tell you something like that, proceed directly to a second opinion.

That said, a primary care physicians diagnosis should be treated as a "preliminary diagnosis" - while well-meaning, the only Dr who is fully qualified to give a Lupus dx is a rheumatologist.

Have you read our "Lupus 101" thread? (Link below.) It will offer you lots of information about how to prepare for the rheumy appointment, as well as listing the symptoms that are used in the diagnosing process. You'll see that the red rash on the face has very little to do with a real diagnosis, but several of the other symptoms you mention are suspicious!

In any case, sometimes we don't get a clear diagnosis for several months or longer. That really isn't the issue, the primary thing you are looking for is TREATMENT to relieve your symptoms! The rheumy is the one with the education and the experience to treat you - and sometimes things are questionable enough that how you respond to certain treatments helps them figure out the final, specific diagnosis.

When is your rheumy appointment? Has your PCP given you any treatment in the meantime?

Let us know how it's going!

PS. It's often better to approach a new rheumy with the attitude, "These are my symptoms, what do you think is wrong?" rather than saying "I have Lupus". It's like the blind men each touching part of the elephant, the one touching the tail thinks its a snake because he can't see/feel the whole picture. You don't want the rheumy only considering one disease, when there are several that may fit your particular set of symptoms.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 1/15/2017 1:04:27 PM (GMT-7)


Posted By : Dustmite - 1/15/2017 2:04 PM
Couldn't get an appt until Feb 6th. In the mean time I see a pain management doctor who I have seen since 2005. It was at her request that I get some kind of answers before I get worse. I'm just frustrated with all of this. My body is falling apart and nobody knows why. Thank you for your quick response. I appreciate it.

Posted By : Dustmite - 1/15/2017 2:07 PM
PS Is a very good point. Will take your advice

Posted By : Bsime - 1/15/2017 2:45 PM
I was in my mid 60s when I got it. Anybody at any age can get lupus although it is most common for women in child bearing years. I do not fit that description!

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : Dustmite - 1/15/2017 3:52 PM
How were you finally diagnosed with lupus?

Posted By : Bsime - 1/15/2017 4:10 PM
Combination of clinical symptoms and labs which is how most are diagnosed. Labs alone do not diagnose lupus although there is a lupus panel that looks at autoantibodies commonly associated with lupus. Lupus can be very difficult to diagnose and can mimic other diseases so it is not easy particularly if you are seeing a PCP or a rheumy who is not experienced.

Every patient presents with a different set of symptoms and if you have say, a positive ANA but no symptoms you might or might not have lupus. One of my docs, a hematologist guessed I had lupus based on low platelets and RBC after running many tests including a bone marrow biopsy and finding nothing. 2 months after his guess I became symptomatic and labs confirmed the diagnosis.

This is a good guide to diagnosing it.

http://www.lupus.org/answers/entry/diagnosing-lupus

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : Melissa D. - 1/15/2017 6:07 PM
Welcome to HealingWell, sorry to hear you've had to wait so long to get into a rheumatologist. One thing I would highly recommend if you haven't already started right down your symptoms do so, and take your journal with you to your first appointment. Trust me you will either not remember everything when you get there or you will be so overwhelmed you will leave the appointment and kick yourself because you forgot something.

Posted By : Dustmite - 1/15/2017 6:42 PM
My primary care doctor called me on 14 Dec to tell me that all my autoimmune blood test were positive and read through all my medical records. She said it read like a textbook for lupus. Since then I have journaled all my symptoms and fevers everyday. I know I will be overwhelmed when I get there. On top of everything else my nephrologist says there is no way that I could have lupus. And my stage 3 chronic kidney disease is not caused by lupus or my high blood pressure that he can't believe that I have been taking meds for for 30 years. But he can't tell me what is causing my kidney disease. So maybe having my daily journal will speak for me with my new rheumatologist. One can hope. I just want some answers and things to slow down.

Posted By : Bsime - 1/15/2017 9:12 PM
Have you had a kidney biopsy? I had lupus nephritis which was confirmed by the biopsy and that is one of the most common symptoms of lupus.
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : Dustmite - 1/16/2017 12:44 AM
Haven't had a biopsy yet. I'm changing nephrologists. I've had this one for six months and he doesn't allow me to ask questions and announceced,' oh yeah you have about 50 percent kidney usage left, but you can live with that. Changing doctors.

Posted By : Bsime - 1/16/2017 10:31 AM
Your nephrologist sounds like a doctor to replace.
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : PattyLatty - 1/18/2017 7:49 PM
I was also in my mid 50's when diagnosed.
SLE, fibro, renauds, restless leg?

Posted By : Dustmite - 1/19/2017 1:58 PM
I thank everyone for their posts. I am so looking forward to my first appt with this rheumatologist. I am hoping my journal will help and I'm going to take Lynwoods advice and tell him theses are my symptoms, rather than this is lupus. I am scared that he will say that this is lupus and at the same time say this is not lupus. I want answers. My insides seem like they are breaking down one at a time without any doctor knowing why. 2016 was a rough year. 2017 seems like it's starting off the same. My urologist found a dark red patch on the back of my bladder. He wants to wait six weeks to see if it is something that will heal up, before doing a biopsy. After last year and everything that happened nothing surprises me anymore. What's next? I'm frustrated. I don't drink or smoke, I eat relatively right, I just don't understand what's causing all these issues. I'm ranting. Sorry. I'm lucky to have a very understanding husband of 39 years. He takes good care of me. He says I stay with him because he's got good health insurance. Lol.

Posted By : Emmachase - 1/23/2017 7:06 AM
Hi all, I am new to this site and also newly diagnosed with discoid lupus. I had negative ANA test but a horrible rash on my face that has only cleared up with clobetasol and tacrolimus. The rash started back in late August and took a combination of 3 doctors to come to the conclusion of DL. Also I should mention that I started taking plaquenil 2 weeks ago. I'm figuring out with trial and error what triggers these flare ups.
My big question to everyone who has the facial rash is have you experienced it being isolated to just one side of your face? Mine is on my left side, all the way from my brow line down to my middle cheek and from my nose to the hair line by my ear. It's not as bad on the right side, two weeks ago it started just at the corner of my eye right now and trying to keep at bay before it gets any larger.
Any insight would be great! Also I am extremely grateful I found this site. I feel very alone in this and now know I am not.

Posted By : Lynnwood - 1/23/2017 7:50 AM
Emmachase,

Welcome! I've noticed that rashes on the left side of the face are sometimes more prominent in people who spend a lot of time in their cars. Sometimes the photo-sensitivity we tend to get is triggered by sitting next to automobile windows. I have window tinting in my car and it helps a great deal with keeping me away from extra sunlight. (If you get tinting, make sure to get the "darkest legal" tint - don't want to go too dark and have to pay fines and have it removed!)
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 1/23/2017 8:08:05 AM (GMT-7)


Posted By : Emmachase - 1/23/2017 8:05 AM
Thank you Lynnwood.
Actually my dermatologist recommended I do that as well. I am a medical sales rep and spend a lot of time in my car so it makes sense to do that.
My rash is so bad right now that my right eye is almost swollen shut. It's rather embarrassing and disfiguring. I'm going through a very emotional time right now with my recent appearance changes.
Have you ever heard of anyone else getting swollen this bad with a flare?

Posted By : Melissa D. - 1/23/2017 8:52 AM
You're dermatologist or rheumatologist can actually write you a prescription for tinting darker than the legal limit, i.e. "Limo tinting" and you can file for a letter of permission through the DMV in your state. I had to do this because the effects the sun was having on me while driving, rashes, headaches and discoloration. The tint helps immensely, only thing now the damage is done as far as the discoloration.
Hugs;
Melissa
_____________________________________________________
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

Posted By : Emmachase - 1/23/2017 10:32 AM
Thank you Melissa, I will look into it today for sure.

Posted By : Lynnwood - 1/23/2017 1:53 PM
I had never heard of an window tint exception for auto window tinting, so I did a little research. Actually laws vary by state (which can actually get tricky if you live/drive near state lines.) Anyway, it appears the phrase to search for is "Tinted Glass Waiver". Triple AAA at www.drivinglaws.aaa.com has the general state guidelines, but it looks like the application for a wavier is slightly different state-to-state.

Good to know, Melissa, thanks!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 1/23/2017 1:04:35 PM (GMT-7)


Posted By : Upstater - 2/28/2017 9:54 PM
I was also recently given a Discoid Lupus dx from a skin biopsy on my scalp. I did not have the associated hair loss, but it was scaly and itchy for a bit. Betamethasone works to calm it. Also have mild facial issues....redness and burning feelings that come and go.....and a rashy area in the inner corner of one eye. This all seemed to start after two trips to Florida and far too much sun.

I do also have a positive ANA and am seeing my third rheumatologist. The first one did run some tests....mostly inconclusive and told me to "keep my hands warm" - though I don't have any Raynauds at this point. He was also a jerk. The second one was very nice, but thought I had Psoriasis after seeing fungus on my toenail. My dermatologist was the one who seemed most concerned. So now I am traveling a bit to see a real specialist. Waiting for her interpretation of many labs.

Posted By : Butterflake - 3/2/2017 11:04 AM
Welcome to our forum Upstater. Your skin biopsy results are by far the most important results to bring to your new specialist, but be sure to bring any other results (such as blood work) with you as well. Also, as we often suggest, it's best to not tell your new doc that you think you have a particular diagnosis such as discoid lupus. Let the doc reach their own conclusion. Let us know how your visit went and feel free to talk with us anytime. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : Farmgirl59 - 3/21/2017 3:56 PM
I am new to this type of talking. There is no support in my area for lupus, so I do a lot of reading on the internet. In 2014 I had a positive ANA when I got dx. with pancreas divisum. My regular pcp blew my off when I asked about it. During 2014-2015 I look back and notice I was taking naps during the day, so exhausted from just regular outside work and my muscles became weaker. I had terrible joint pain and stiffness. Was so bad I would literally stand all night and chart,take care of my patients so I wouldn't have to sit, than get back up. I worked 12 hour nights in an ICU. about a yr ago I got pneumonia from a very sick patient. Missed 6 wks, during that time I developed upper arm weakness. Couldn't lift a cup out of the microwave. I changed pcps and she ran a lot of blood work and said I have lupus, started me on hydroxychloroquine and prednisone, adjusted a bit but now on daily dose. I waited 6 mon. to see a Rheumy and he said I don't have lupus I have fibramalgia and to take lyrica, which I had a bad reaction. Went to another Rheumy 3 mon later, Informed me my population have a small sliver of lupus on the pie chart, I have something else. He did lab, he adm he was perplexed, I did not have all the other things but could not explain my ana, He said I could have 10 autoimmune diseases, he would start me on hydroxychlor. and prednisone now but since I'm already on it, I will end up with lupus. Both of these dr's put me in their box and did not ask my history or how I felt. I wake up every day with a red cheeks, a purple red nose and red neck, mouth sores etc . My pcp does listen to me and adjust.I have gastroparesis and hypothyroidism, and PAT. I am frustrated with the rheumy's. cool

Posted By : Upstater - 3/21/2017 5:13 PM
I did see the rheumatologist at "specialty center". She was fabulous and I feel confident in her expertise. At this point she is saying UCTD and I am satisfied with that. She put me on Plaquenil. And I will see her again in May. She also referred me to specialty dermatologist, who I will see Thursday. I do like my local derm, but I think she just wanted the opinion of this dermatologist she trusts and who has experience with autoimmune/complex dermatology. Though, luckily most of my skin issues seem to be managed fairly well with topicals.

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