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1222368 tn?1266947996

Undiagnosed

I am a 37 yr. old female, married with 3 children. After the birth of my first daughter (12 yrs. ago) I began to have symptoms...joint pain, facial rash, and hair loss. I have seen a chiropractor for about 10 yrs. to deal with the joint pain. About a yr. ago I started meds to treat the "rosacea" on my face with no improvement. The rash looks malar but had Lupus Band Test done and that was negative. Dermy referred me to a rheumy after running an ANA panel which came back at 1:160 with a centromere pattern. Current symptoms include facial rash, extreme photosensitivity (rash though my clothes), hair loss, fatigue, vertigo, nauseau, joint pain, fluid on joints, extremely tender muscles, low vitamin D (20), arthritis (neck, shoulders, SI Joints, hips, knees), degenerative disc disease in neck, cold sensitivity, carpal tunnel, gritty dry eyes, and heart palpitations. Blood work negative for Lupus and RA. I have small sores in my mouth, which aren't very painful. I am taking 400 mgs. of Celebrex, 2000 IU of Vitamin D, Darvocet 3 times daily, tylenol arthritis as needed, and tylenol PM to help me sleep. I have had cortizone injections in my neck, right hip, and left wrist. I wouldn't say that I am depressed but close to it. My rheumy is nice enough but his assistant laughed at me when I said that I didn't think the Celebrex was working well enough...he said to go off it for a week and then I would see that it is working. I think that is a valid idea but him laughing while he said it just felt like he was telling me I didn't know what was going on with my own body. I live in Maine and rheumys are few and far between but I may look for another one. My pain doctor is an angel and the orthopedist who is dealing with my wrists is great too...so that helps. So I guess I am just venting and looking for advice and suggestions :)
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1238995 tn?1268119702
I definately think CREST. I too have all of your symptoms, my ANA was between 1:1280-1:5000 and a centromere pattern. My thyroid came back normal. Rheumatologist said CREST because of symptoms (same as you have) and because the pattern of the cell being centromere.

As for your skin, this excerpt from Johns Hopkins Scleroderma Center website helped me, I just switched to Tide Free (white box) for my laundry soap and Downey Free (white bottle) for fabric softener- it does suck washing my clothes seperate from my husband but you get used to it especially when you don't itch anymore. :) Also I use Aveno bar soap for my skin, as listed below, and Lever 2000 soap for the private parts as it says. So far (past 6 months) no more itching. :)

Here is that excerpt-
(http://scleroderma.jhmi.edu/patients/patient-f-a-q.html)-

What can I do to prevent the itching?

Avoid:

•Scratchy fabrics such as wool
•Rubbing alcohol or other products containing alcohol (perfume)
•Harsh soaps, detergents and household cleaners such as: Wisk, Lestoil, Arm and Hammer, Woolite, Cheer, Tide, Liquid soaps, detergents with extra power or brighteners, store brand soaps.  Use: All Powder, Das Powder, Ivory Snow and Safeskin.
•All fabric softeners’
•Hot baths
•Excess cold exposure
•Vigorous exercise
•Active or passive cigarette smoke
•Fatigue and anxiety

What can I do to relieve the itching?

•Turn down the heat.
•Use mild, unscented or moisturizing soaps such as: Alpha Kerry Dove, Aveeno Bar (dry skin formula), Lever 2000, Neutrogena (dry skin formula).

Do not use: Ivory, Dial, Zest, Safeguard, Jergens, Lava, Lifebuoy, Camay, Coast, Cuticura or Ocean Spring.

•Limit the use of soap to areas that are likely to have body odor.  Rinse well.
•Use mild, non-drying shampoos such as: Neutrogena Regular, DHS Clear, Duplex or Progaine.
•Use warm, not hot water.
•Take soothing baths. Add ½ cup baby oil to your bath. Bathe with Aveeno Oatmeal, Oilated Aveeno, Cornstarch, Mineral Oil or Cottonseed Oil.
•Put moisturizers over your entire body immediately after bathing or showering.  Use such products as: Eucerin Cream or Lotion, Neutroderm, Lubriderm, Complex-15, Alpha-Keri Lotion, Eutra Lotion, Neutrogena Hand Cream, Candermyl Cream, Moisture, Aquaphor Ointment, Lacticare Lotion, U-Lactin Lotion, Theraplex Lotion and Emollient.
•Moisturize often.
•Use cooling agents such as menthol or camphor (Sarna Lotions).
•Use gloves when using any substances that are rough on the hands.
•Avoid excessive cold or heat exposure.
•Do not use topical numbing agents or antihistamines since they tend to be drying.
•Avoid electric blankets except to warm the bed. Their constant heat will cause you to lose body moisture.
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Avatar universal
I think that your symptoms sound more like a problem with your Thyroid.  Have you had that checked?  I had some similar symptoms and didn't realize that anything was wrong until a blood test came back.
Helpful - 0
434278 tn?1324706225
Hi and welcome to Medhelp

It sounds like you've been going through this for quite some time.  Have they checked your ANA only once?  The Centromere pattern is rarelly seen in lupus and suggests a form of scleroderma called the CREST syndrome.  CREST stands for Calcinosis, Raynaud's, Esophagitis, Sclerodactyly, & Telangiectasia.  

When I read your list, I immediately thought about lupus, and I wouldn't rule anything out at this point.  But I am glad they are following through with you and not doing "a" test and then throwing you to the wind.  

I personally am not familar w/ CREST.  I'm thinking the post about the knots has someone who posted on there recently (in Feb.)  I'mnot sure if CREST is sensitive to the sun like lupus is, but with lupus, you can spend time in the sun prior to the ANA test and cause your ANA to be more elevated.  

Praying for you sweetie
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