View Full Version : Not officially diagnosed yet but doctors and I are pretty certain lupus is to blame!

Carrie L
08-08-2013, 04:03 PM
Hello, I just turned 29 and have been experiencing many symptoms of SLE for years now. My whole body has been affected one way or another but my most recent new symptom is an odd rash appearing on my neck and chest. It has happened twice in the last month in a half and still has not completely gone yet. It started as what looked like a bug bite on my neck then I began getting a rash that ran down my neck to my chest on the left side and eventually behind my ears. The original spot is still there with a slight crust and the skin around it almost looks like stretch marks with random bumps. I have also been getting many forms of skin changes including two perfectly round spots with black dots, two brown streaks on left shin with one that flaked and slightly pitted, red patches that come and go, brown spots, white spots as well as white lines, red dots all over body, redness across nose and cheeks that has been getting more and more noticeable, a lesion on my scalp that is tan with bumps with detached edges that itches and bleeds when scratched ( this has been there for over 13 years) it changes in size as well from a dime to about an inch or more in diameter, moles are changing, skin tags, etc. My ongoing symptoms also include extreme fatigue and achy muscles and joints, irregular periods, spotting, miscarriages, severe bloating, loss of appetite, excessive burping, ibs symptoms, fibrocystic breasts, tailbone pain especially when first sitting down, joint pain in hands, knees, shoulders as well as upper back pain and stiffness in neck, neck feels swollen, occasional feeling of bugs crawling on me, pain in lower abdomen, tingling on scalp, random patches of goosebumps appear on body without being cold, headaches, constant upset stomach, dry hair, nails and skin, ridges and peeling of nails, heart palpitations, depression,muscle spasms, night sweats, excessive sweating in arm pits, and unfortunately so much more! If anyone that has been diagnosed has experience with any of this please feel free to chime in, I feel so confused! Thank you for reading, it felt good to get it out although there is more!

08-09-2013, 09:03 AM
so sorry to hear about your problems - I am much older and just in the process of getting diagnosed but I hear you. Hopefully a good treatment plan will help you.

Carrie L
08-09-2013, 02:19 PM
I hope you can get your diagnosis as soon as possible, its scary not knowing! I just had some more blood work done today and go back in monday. They are going to refer me to a rheumataologist. Sorry about the spelling there! :-) Yesterday the pain got so bad I almost went to the hospital but it eventually calmed down enough to handle. Best of luck to you!

08-10-2013, 03:40 PM
I have many of those symptoms while the others I have never heard of being related to SLE. The sensitive digestive track makes a lot of sense to me though. Are they looking at any other AI disease? Make sure they don't just pin it on lupus. I say that because there is no cure and mainly they prescribe Plaquenil..... If its possibly something else what if plaquenil doesn't work and what you truely have needs a more aggressive treatment? I mean plaquenil is so gentle you can take it while you're pregnant. Keep researching possible reason don't stop with lupus and remember it can take a long time to receive a final diagnosis

Carrie L
08-10-2013, 09:28 PM
My biggest issue is I do not have health insurance and am short on funds so my diagnosis has been moving slowly. I am definitely going to make sure my doctors look into other autoimmune disorders as well as other possible causes. My thyroid comes back normal to low normal but have never been diagnosed although I fit hypothyroidism. There are just so many possibilities but lupus sure seems to make sense a lot. Today I had two pink patches appear on my upper back. Circular with slight crusting. So many different "rashes" have been flaring up especially since the weather warmed up. In the winter my skin becomes extremely dry and flakey and as a baby and child had rashes that doctors could never pinpoint the cause bouncing between possible eczema or psoriasis. I've always gotten dry flakey circular patches mainly on my arms and face too. I had a rash flare up across my jaw line when I was pregnant that required treatment. My skin is clearly unhappy along with the rest of my body! My knees have been really acting up these last couple weeks instead of the usual once in awhile too. Anyways sorry to rattle on but I am just in awe about all of the pains and discomforts! Thanks for your advice!

08-16-2013, 05:23 AM
I was fortunate enough to be able to purchase an individual policy before I realized what was going on. Unfortunately my plan sucks I have a high deductible plan. I am a healthcare reform agent service rep for a major insurance company so I will advise you to get an individual policy now while rates are affordable and there's no diagnosis unless you're taking plaquenil. Do you not qualify for group coverage?

Carrie L
08-16-2013, 09:39 AM
Currently we are so broke I can't afford anything and do not qualify for state assistance somehow! We are a family of 4 living off of less than $21,000 gross annually. I applied for a program called Project Access where doctors donate their services and am waiting to hear if I was accepted. The oddest thing happened two nights ago, I went to wash my face splashed some water on and began wiping with a cloth when suddenly my entire face and eyes began burning like someone threw acid on me! The cloth has not been used for cleaning, did not smell of anything, and was washed with the same detergent I have been using for a long time so I don't know what that was! Afterwards my face was red with small bumps on it. Have you ever experienced this, anyone???? My doctors are all perplexed as they put it as to what is going on and the few tests they ran showed normal! They all agree its some sort ofconnective tissue disease and possibly others as well. Unfortunately I need a rheumatologist but not one is accepting patients at this time! They are hoping a dermatologist may be able to figure out something based on my vast array of rashes. I am so tired of not knowing what the heck is going on! I went swimming in a pool yesterday and afterwards had more pink spots and circular patches and my face flared up again. Never had that problem with pools in the past although this was my first time swimming in one in years. Thanks for replying and best of luck to you as well.

08-22-2013, 09:24 AM
Wow I am sorry to hear that it is so tough out here. Have you heard anything from the project assistance. And not one is accepting new patients? Where are you located at? A pcp can start your treatment if need be

09-22-2013, 08:07 AM
Hi Carrie,
I have many of same symptoms, recently I been noticing white lines and flat white bumps on my knuckles of my hands... Do you get this too? Any idea what it is?