[krisperry]

I have a lot of the symptoms - not sure though. Perhaps all the little details are just that - lots of little things wrong with me.

Things I "know"
1. Fibromyalgia diagnosed in 2001
2. Lordosis/Kyphosis diagnosed in 2003. Currently am down almost 2 full inches in height
3. Arthritis in my spine from mid back to hips (found on x-ray)
4. very large benign goiter. Need thyroid taken out (yes, the whole thing. the goiter is only on one side but is so big it will be impossible not to remove my entire thyroid)
5. Vertigo - first diagnosed in 2001. Reoccuring monthly episodes

Tests:
All thyroid tests are within normal range as are parathyroid
Elevated sed rates
Positive antibody test

Other stuff:
Sun allergy during the summer. Being in the sun makes me itch horribly and I get a rash. (not heat rash, only where the sun touches me)
Loss of hair - overall this is pretty extreme
Joint Aches
Stiffness
Pink eye at least once or twice a year. Had it last month
Cannot see at night (rarely drive). Vision is often slightly blurry (not correctable with contacts. Eye doctor said my eyes look fine)
Fatigue
Foggy brain
Heart Palpitations / Pain
Tremor (few times a month)
Nausea
Pinky Rash most of the time. Always on face.
Scaley rash on scalp (dandruff medications don't touch it)
Abdominal Pain - tender to the touch (comes and goes)
No body odor (nice but wierd)


I was trying to decide if the rash that I have could be a slight malar rash. I'll go try and boost my count so that I can post the url.

I'm frustrated. It has been almost 12 years since I've felt normal. My heart has been hurting recently so I'm prompted to go back to the doc again.

Just wish I had an answer. I'm SO glad to see these forums

Kris

 

[greenhaggis]

Hi Kris and welcome!

Gosh you have alot going on!

I would ask to see a Rhuematologist for some further tests regarding all the symtoms you have!

Take care!
Lesley

 

[krisperry]

Thanks for the welcome. It is hard to list them all out like that. Makes me feel broken. Most of the time I plug on and try to ignore it all (yes, I really do try).

Probably get that from my family who is riddled with autoimmune junk. My own father has dermatomyocitis. Iknow how bad pain can get and I'm not there. Though I think if the average person were to jump in my body they would be overwhelmed, kwim?

*sigh*

 

[LBH]

Hi!

I actually had all the things you mentioned regarding the lupus symptoms and was having a time getting diagnosed even with positive ANA's. I decided to see a Dermatologist and have a skin biopsy on that photosensitive rash I had. I stayed in the sun for 3 days just so I could get myself a good old rash for the doctor to see! LOL! It's not funny but I suffered too. I want you to know the biopsy of the skin came back positive. Yep! After that I started getting treated for lupus.

 

[krisperry]

Thanks Lynette, I will keep it in mind if I get brushed off again.

 

[Lily]

Hi Kris and :welcome:

You sure do have a lot going on

When you say your antibody test was positive which antibody test do you mean? Even though your thyroid and parathyroid tests are within normal range did they test your Vitamin D level? Just a couple of questions for starters and we might be able to help some more

Hope you enjoy the site,

love
Lily

 

[krisperry]

I don't know which one it was It was run on a standard thyroid panel and only that was positve along with my elevated sed rate. They were looking for thyroid disease b/c I have a huge benign goiter and symptoms of thryoid disease. I'm negative for thyroid disease since all by numbers were within normal range. One was borderline but I don't remember which now...I'll try to go find that info.

I have not had my Vitamin D level tested but I will add it to my list of things that I would like to be tested. Wait, why Vitamin D? lol I probably should know before I ask for the test to be run. (Also want to be tested for the lyme antibody) Thanks.

 

[halfpintfl]

Hi Kris, and welcome. I am sorry that you have such a full plate right now, but Lily is right, we need a little more info from you.First, how old are you? Second, it seems like you have not been seen by a dr. in a long time. Lupus is called the disease of 1,000 faces for a very good reason, it litterally takes almost that long to get diagnosed, because everything imitates it. Ask your GP for a referral to be seen by a Rheumatologist, it will probably take a while to get an appt. Now, begin making a list of your family medical history. Then a list of your medical history, any sickness, surgery's, tests, meds, what bothers you, what helps you, and then make a copy. The one copy you will hand to the Rheumy at the end of the appt. and say that this is for him to put into your file. The other you keep at home and add to it. I seem to be running out of space, so you give us more info on you, and we will try to help with more answers. Lupus is not diagnosed by symptoms alone.:wink2:​

 

[krisperry]

I am 32.

I have most recently been seen by a rheumatologist in May 2007. Just over a year ago. Honestly, the doctor is really just focused on my goiter. It is quite large (largest benign that he has ever seen). I should have that removed later this year.

I did start a medical blog yesterday so that 6 months from now, I should have a clearer "big picture" When I reach the requisite 15 posts, I'd love to share it (or at least some pics) to get some opinions on rashes and such (I know it isn't a subsitution for a doc).

I hate to give my medical history. I have an excel spreadsheet that lists everything. The last doctor I went to gasped when he saw the list. His comment was "remarkable. Many of these are rare. Do you know that?" He left me with the impression that he didn't quite believe me. My mom went with me to my next visit (eyes too bad to drive). The doc actually brought up my medical history and she confirmed it. He hasn't brought it up again.

I moved about 7 months ago. I'm northeastern North Carolina if anyone is nearby. I need to find a new doc since my old one is in Raleigh.

Thanks for all your help you guys.

 

[Lily]

Hi Kris,

Have you seen an Endocrinologist for your thyroid problems? If so I thought they would have tested vitamin D, it's pretty important for a lot of body processes and has a big role to play in correct immune system functioning.

I think that they will probably want you to have that goiter out before they sort out a lot of this stuff. However I would still try and find a good Rheumatologist who is up on Lupus and revisit all this in light of your ongoing problems. You can post in our Find A Doc Forum and there may be someone near you who can give you a recommendation.

It's very difficult to determine what some rashes are but it's good you have taken photos, you can show them to the Rheumy because they have a habit of disappearing just when we need to show them He may refer you on to a Dermatologist, sometimes they can help diagnose rashes by skin biopsy and some here have had Lupus diagnosed that way. Good you are keeping a health diary too so you can fill them in on what's been going on with you.

good luck and if you find those test results we may be able to help you understand some of it.

love
Lily