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Old 09-22-2010, 11:07 PM   #1
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New and looking for information

Hello,

I just got back from a trip to my Immunologist and he thinks I have Lupus. I am being referred to a Rheumy and am having more labs done.

I started having severe allergic reactions about 2 years ago Anaphylaxis and developing food allergies. Then I developed thyroid nodules...Just seemed like one thing after another. After another severe allergic reaction I sought out an Immunologist in June. I really like him and he did a test on me anti AB Receptor Anti antigen...it was positive and he felt my allergic reactions were due to AI Disorder. I was so hoping he was wrong.

Last week I developed severe joint and muscle pain, skin sensitivity, upper abdomen pain, fever 102.8, extreme fatigue last week. Then it became hard for me to take a deep breath. I have to say I have never been so ill for 8 days and still am but improving. The ER Doctor said I had Pneumonia but my chest xrays says clear.......... My Immunologist says he thinks I have Lupus. The skin on my arms is wrinkled for my age which can be a sign of Sclera Derma????...So now I am being referred out.

I feel so sad and need to get educated on what is happening to me.

Thanks for listening......Oleander

 
Old 09-23-2010, 08:24 AM   #2
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Re: New and looking for information

Oleander, hi & welcome. I'm sorry you're having problems. As you requested, I'll suggest some reading (easy---right here on this site). When you're done reading, I hope you post more... comments, questions or whatever.

There are "sticky posts" at the top of the thread list containing permanent info about lupus symptoms, tests, diagnostic criteria, "alternative criteria", APS (a blood clotting disorder common in people with lupus), and in-depth reading at your library.

Lupus has so many presentations! You'll find there are 11 diagnostic criteria. To support a diagnosis of systemic lupus, a patient generally has to meet 4 or more, but not necessarily all at once. Therefore it takes many patients awhile to get things figured out.

Autoimmune bloodwork is generally done---but results are tricky, as values can rise & fall as flares come & go. The high-level one, ANA, is actually only a "threshhold test". In & of itself, it doesn't diagnose anything, because it turns positive in a variety of conditions (not just lupus). Almost (but not quite) all people with SLE have a positive ANA.

More specific autoantibody tests are typically done in addition to ANA. Two such autoantibodies are considered highly specific to lupus, anti-ds-DNA and anti-Sm; so you'll see these two "make" the criteria list. But as many as 12 or more others are possible, including (but not limited to) anti-RNP, anti-Ro, anti-La, antiphospholipid, anti-neuronal, etc.

Rheumatologists also typically call for urine tests to detect protein, which may suggest kidney involvement.

While skin rashes are common in lupus, not all patients get them. Best-known are malar (facial butterfly) and discoid (tend to scar or depigment). But there are others, e.g., SCLE (annular or papulosquamous form), tumid, bullous, etc. Rashes may be biopsied and subjected to immune stain tests, which often (but not always) can prove a rash is lupus-specific.

Mere wrinkling of arm skin may be way too mild a thing to suggest scleroderma (hopefully!). You could ask the rheumatologist for his "first take".

Most of all, if this does turn out to be lupus or some "close cousin", please do know that, with proper treatment and follow-up, many people are able to remain relatively mild. So hang in there & post more when you can, OK? Bye for now, with my best wishes, Vee

 
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Old 09-23-2010, 09:49 AM   #3
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Re: New and looking for information

Thank you so much.... Oleander

 
Old 09-23-2010, 03:01 PM   #4
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Re: New and looking for information

As always Veej, great information.

Oleander, I find that interesting about the wrinkled skin. My grandmother died of Scleraderma, that was in the 50's when no one knew what it was. I don't remember her being exceptionally wrinkled and she was 54 yrs. old. Now, I am like the portrait of Dorian Gray, if you know that book or movie (it is an old movie, I am old). My face and neck at 61 yrs. has very few wrinkles, which I am thankful for the good genes. However, my hands look worse than my 80 yr. old friend. My daughter has a social day business for seniors, my hands match that of the 90yr olds. Wish my mind was as good as some of them. I research what I can about auto immune and certainly Scleraderma because of my family history and I have not read that. By the way, my arms are fine, the wrinkles start from the wrist down. Always something new to think about.

Glojer

 
Old 09-23-2010, 04:16 PM   #5
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Re: New and looking for information

It is interesting since I noticed it starting about 1 1/2 years ago and I am 57. I appear younger than I am due to my Dad's genes...but my skin on both arms from elbow down look like they belong to an older lady. I thought maybe it was all the betadine I scrubbed with while younger? too much sun since I grew up in So California near the beach. It does not seem to be on my face.

Then the ER Doctor saw my arms Saturday and asked "How long have you had Scleraderma?" I was like WHAT? He said make sure to show your arms to the Immunologist.

My Immunologist said it needs to be looked into since I have all these other symptoms. Also One of my brothers has the wrinkled skin and one doesn't. Both older than me. I just came back from visiting my brother in Seattle and he said " I see you have that skin on your arms like me". I had no idea he had that.

I keep thinking back to if anyone had this in our family?

Oleander

 
Old 09-23-2010, 07:36 PM   #6
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Re: New and looking for information

So now it is wait for labs.......I get the rest of my Tick disease results back tomorrow. The rest midweek.

It has been 9 days and today I feel like I have backslid...hard to take a breath, aches a little when I breath in, really tired, shoulders achy. I hope this is not coming back.... Took my motrin, took my Doxycycline, just am not hungry.....My lower back hurts like where my kidneys are. I felt better yesterday than today. Trying to stay positive and hope for a better day tomorrow.

Thanks for letting me vent.....Oleander

 
Old 09-24-2010, 12:12 PM   #7
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Re: New and looking for information

Oleander, venting is a good thing, it always helps. I find the fact you have trouble breathing very interesting also. I have been having trouble with that myself lately. Keep us posted, good luck.

Glojer

 
Old 09-24-2010, 01:25 PM   #8
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Re: New and looking for information

Two Tests back

ESR high at 56.........normal is 0-30

CRP non cardiac is high at 1.91 normal is 0.00 to 0.50


I have discomfort when I take a deep breath and lower back ache but I am not as sick as I was...

Thanks, Oleander

 
Old 09-25-2010, 02:26 AM   #9
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Re: New and looking for information

Hi, Oleander. Are you scheduled to see the rheumatologist soon? I hope so, in that your first blood results caught high CRP & ESR. (I often got in to see specialists AFTER I started feeling better. Not so useful.)

Are you taking doxycycline because of a suspected tick bite? Just curious. (I was treated for Lyme at the time of my first full-blown lupus lesion. I found out later that many people have flu-like episodes when they cross the line into "full-blown".)

Of course, only doctors can say what's going on. But, as my rheumie said, in conditions that flare & recede, tests are most useful when drs. can catch you "on the rise". So I hope you learn more very soon. Hang tough! Sending warm wishes, Vee

 
Old 09-25-2010, 06:38 AM   #10
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Re: New and looking for information

I do not have my appt called to me yet. I called my Immunologist's office and inquired about it because I learned long ago to be my own advocate. They are to call me on Monday.

I am on Doxyclycline to cover a possible tick bite and or pneumnonia. Truthfully I think we know what is going on here. All tick reports are back with the exception of one, all negative. My chest still hurts when I take a breath, but breath sounds are clear. No pneumonia.

I do not know enough about this to know how my body is being hurt right now. I feel like crap. I am tired, I ache ( not like I did), Not sure if just sitting here is the right thing to do. I am taking motrin. My boss is going to need an explanation if I cannot travel next week. I can tell you I cannot.

My Ana reflex, Complement C4 and C5 will be back Monday or Tuesday.

I understand what you are saying. By the time I get into the Rheumy I may be fine and my lab levels normal. Luckily my Immy ordered these inital tests.
Are there any other tests you would recommend that I could ask for?

I keep trying to keep from crying. I am trying to stay positive.


Thanks, Oleander

 
Old 09-25-2010, 07:30 AM   #11
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Re: New and looking for information

Oleander, I got the best help when my new rheumatologist orchestrated everything, meaning what tests he wanted, a referral to a dermatopathologist ( = dermatologist + pathologist, meaning a dermie who does his own labwork), etc. In your shoes, I'd probably just keep pressing for that rheumatology appointment, then let him/her take over. Also, my rheumatologist is very particular about which labs he uses: that might be another reason to allow your new rheumie to take full charge. Even though I brought recent test results to my first appointment, my rheumie redid everything anyway (HIS array of tests, HIS lab, etc.)

There are probably quite a few things that could cause chest pain other than pneumonia. For example, some people here have described having costochondritis, where rib inflammation causes nasty pain...

In the years before I knew what was causing my problems, I'd press harder at work, to make up for lost time. I'd have been smarter to rest & smarter yet to have found better doctors sooner! More warm wishes, from Vee

 
Old 09-25-2010, 08:38 AM   #12
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Re: New and looking for information

I already have a Derm who does his own path. I have been plagued with Skin cancer for about the last 2 years. I have Dr Hardin a Derm Path who is about 1 hour away and I am also seen at MD Anderson every 3 months in Houston. Dr Hardin is a gem.

I am from So California and the Medical care here in Arkansas is much different than what I am used too. Because of where I live I have to drive 2 to 4 hours to see any decent physician and then that is questionable. I never considered the possibility of health problems when I moved here 15 years ago.
That is how I ended up at MD Anderson in Houston. I know they know what they are doing.

So I will press on with the Rheumy appt and hope this does not get any worse. So many things are falling into place and making sense to me now.

I appreciate you so much and all the education on this board.

I guess this exhaustion, blue feeling is normal? Hate to sound like a whiner. I am so much better but do not feel good. Does that make sense? Oleander

 
Old 09-25-2010, 10:14 AM   #13
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Re: New and looking for information

Oleander, your statement of being better but not feeling better makes a great deal of sense. Please hang in there and keep us posted.

Glojer

 
Old 09-25-2010, 10:30 AM   #14
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Re: New and looking for information

Hey thanks Glojer...Thanks so much...Oleander
PS I love St Louis

 
Old 09-25-2010, 11:07 AM   #15
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Re: New and looking for information

Oleander, I am St. Louis born and raised so I appreciate the compliment. I related to your dilemma of having to drive 2hrs. to docs. Some of my family live in southeast Mo., and they have either had to travel to St. Louis (almost 3hrs. away) or into Arkansas (can't remember where) sometimes for better health care.

Glojer

 
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