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cannot get answers

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Old 06-15-2009, 07:47 PM   #1
Join Date: Jun 2009
Location: New England
Posts: 3
pescadora HB User
cannot get answers

Forgive me. I am posting this under a few categories because I am not getting a response under the general tab. I did a search for a few conditions and I am posting my symptoms under several that match hoping to get a response. thanks for reading.


I am so frustrated and cannot figure out whats wrong. I like my doctor but I think Im missing something. Here's why:

For 18 months or so I have been getting hives, not a little hives, but sometimes covered head to toe. I get them for no rhyme or reason and have tried weeding out variables for allergies, food, perfume, soap and cannot get anything.

I thought it was allergies to sunscreen because I keep breaking out and getting sun rashes. I have been getting rashes on my arm and chest in the sun for years.

From time to time I get sharp pains in my chest. I have no problems with BP and once even had an EKG, nothing. It feels like a feel a flutter right over the area where my heart is.

My hair keeps what I call "shedding" it gets fairly thin.

My knees and legs swell. I had an MRI to check for a torn meniscus and the dr found fluid but not a ton (by the time I had the MRI) my knee wasn't as bad as the day I saw the doctor. MRI showed not tear and the fluid.

And, i have been gaining a lot of weight (40lbs). But I am in my mid 40s and work a lot.

Otherwise I am pretty healthy. I dont have Psychiatric problems, I keep a normal job, have an otherwise normal life, but I cannot deal with the rashes anymore and my knees anymore

Any guesses or leads on what I can ask my doctor to check for. She seems lost.


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Old 06-16-2009, 04:06 AM   #2
Angel MJ
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Join Date: Apr 2009
Location: Johannesburg
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Re: cannot get answers

Hi Pescadora welcome to the message board.

sorry you are having a tough time at the moment!
i am lupus (SLE) positive and get swollen + painfull joints (arthirits like, even been called gout before my dx) ... among other things.

i had hives after exposure to 'the chicken pox virus' even a case of shingles (exposure to chicken pox again) also lost hearing in my right ear (chicken pox virus turned into viral infection in my ears) and only once was it direct contact, it has been someone that saw someone carrying the virus - dormant in them and it 'blossomed' in me.

all i can suggest is asking your doctor to do a full blood work up and take it from there ... also read thru the sticky posts (permanent info at the top of this board) it will give you a broader view of lupus ... if you relate to anything then that is something you can discuss with your doctor, but the blood work can at least give you a starting point.

good luck and i hope you can find your answers!

Old 06-16-2009, 04:52 AM   #3
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Re: cannot get answers

Pescadora, hi. Sorry to read about your various problems---horribly frustrating for you! First off, I'm just a (dumb) patient, so please take what I write in that light, OK?

In your shoes I'd see a dermatologist or dermatopathologist to look into your photosensitive rashes. (From what you wrote, I'm assuming these are different from the hive-like erputions you describe...?) By "look into", I mean deep-punch skin biopsy, *including* immunofluorescent stain tests.

I'd also talk to my dr., to discuss & get copies of recent bloodwork & urinalysis. (a) Ask if you've been tested for thyroid function. (b) Ask if autoimmune testing has been done. By that, I mean ALL manner of specialized blood tests, not merely ANA. (Because ANA is only a "threshold" test, it isn't diagnostic of any condition). (c) Since torn meniscus NOT found, ask what else could account for leg swelling, e.g., heart, kidney, ETC. (d) Review all meds (incl. OTC's) you take, if any.

If your dr. & you believe an autoimmune is possible, look for hardcover authors in your local library. One is Dr. Daniel Wallace; another is Dr. Robert Lahita. Dr. Wallace discusses various lupus-specific rashes in one chapter; bloodwork in another; every body system in others; and he recaps, in one especially useful chapter, how he distinguishes lupus from other autoimmunes like RA, polymyositis, etc. He also discusses a form of lupus called drug-induced (DILE), and lists common culprits.

You want a REALLY up-to-date dermie, BTW. I got waylaid because my local drs. considered only the two best-known lupus rashes, malar butterfly & scarring discoid. I had NEITHER. I found out later there are 12 or more unique rashes seen in lupus, some very rare, some more common. I had a "variant" called "subacute cutaneous lupus erythematosus, annular form". I ended up seeing a teaching hospital rheumie---got answers in a month!

I also found out the hard way that bloodwork isn't 100% foolproof. As in life, there are exceptions to the rules. My ANA stayed negative, which happens in a very small % of lupus patients. Once they saw negative ANA, I wonder how many drs. (if any) looked for more specific autoantibodies. (For me, it was anti-Ro that was positive.)

I hope your dr. and you can take a fresh look at everything. As one of my local drs. put it, it makes sense to first consider a "single bullet theory", meaning something that explains all or most of your problems. Post more when you can, OK? Meanwhile, sending you my best wishes, sincerely, Vee

Old 06-23-2009, 02:55 AM   #4
Angel MJ
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Join Date: Apr 2009
Location: Johannesburg
Posts: 221
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Re: cannot get answers

pescadora ... how are you holding up?
Post when you can but just know there is someone thinking of you!

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