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Discussion Starter · #1 ·
Hi. I'm new here. Really glad i found this site. I don't know if i have lupus or something else.

This is going to be long so sorry.. ;)

This is going back a few years, about 20, I started having sores in my mouth...on my tongue. at the time, the gastroenterologist i saw thought it might be the same virus as the cold sore virus. did minimal testing and that was it.

i moved and started fresh with a new doctor. eventually the sores stopped coming. but then i started getting this sore throat that wouldn't go away for long periods of time. my doctor just thought i was stressed and put me on an antidepressant.

in time the sore throat went away. but over the years it recurred and i have be somewhat sluggish and on other psychiatric meds and given the diagnosis of Bipolar Disorder.

Last summer I started getting these spots under my skin, they are reddish. arms, legs, everywhere. my daughter calls them my blood spots under my skin. I started itching and feeling sick to my stomach. then i got this "flu feeling" all the time. and the headaches started in January, with nausea and vomiting. They are terrible headaches like none i've had before. then in june i started with diarrhea abdominal pains in many areas. widespread pain (cramp like). pain in my eye and tingling underneath my eye, feet and hands. my periods are really messed up. sore fingers. and now with the mouth sores back again, on the inside of my cheek and a sore red tongue, and sore throat since july....well i feel absolutely horrible.

I've never been so tired in my life...but I don't sleep well either. and my doctor, well, she thinks I am a hypochondriac. so, i thought, i wonder what the letter said that the gastro specialist said years ago. so i got a copy of the letter and it also says, "could be caused by lupus, crohn's disease or other collagen vascular disorders". well...that would have been nice to know all these years. all the doctors i've seen since then have believed that I am a hypochondriac and are an anxious, "bipolar" nutcase. so, armed with this letter and a call to my doctor from my psychiatrist's nurse, I am being tested for lupus, rheumatoid arthritis, the whole works...i don't think i am going to have any blood left when i go monday for the blood tests. does this sound like it could be lupus to any of you??

thanks for any input

chickadee
 

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Hi Chickadee, sorry for what brings you here but glad you found us. :)
This is a great site, full of friendly and helpful advice. Im glad that at last things are beginning to happen for you so hopefully you'll get the treatment you need and start to get back on track. Im sure there will be many more people along soon to advise you better than me, but I can say that Lupus isnt diagnosed on blood tests alone. So make sure you have a FULL list of ALL your symptoms no matter how insignificant you think they are, when you speak with Drs.
I have total sympathy with you on the ammount of blood needed. I actually call phlebotomists ' vampires' now! :rotfl: Having never been squeamish before I now cant stand to see ALL that blood being sucked up into neat little vials! :eek:

Let us now how you get on
 

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Discussion Starter · #3 ·
sorry, i shouldn't have asked for an "unofficial diagnosis" from you folks here, just frustrated i suppose..thanks for reading tho. chickadee
 

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Hello Chickadee and :welcome:

It's good that your doc is looking into this further and has done more comprehensive bloods. There is no one specific blood test for lupus and lupus is extremely complex to diagnose but it is a good start.

Here are a few links which might help you

http://www.uklupus.co.uk/dxlupus.html

http://www.uklupus.co.uk/isitlupus.html

and lastly the ACR classification criteria for lupus

http://www.thelupussite.com/forum/showthread.php?t=33123

The links might help make things clearer for you. If there are blood tests that point towards lupus or if you have sufficient symptoms then it would be an idea to ask for a referral to a rheumatologist as they are the docs that specialise in auto-immune connective tissue diseases.

Bye for now,
Katharine
 

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Welcome, Chickadee! I think that you are headed in the right direction. Our stories are remarkably similar--down to going 20 years back, mouth ulcers, bipolar, flu-like symptoms... I am just one step ahead of you in finding a dx. I've had the 12 vials of blood drawn, and I've seen my rhuemy twice. So far, my only markers are ANA 1:640, elevated SED rate, and the first of two necessary positives for Antiphospholid Syndrome.

I've read up on APS, and what you describe as "blood spots" is a symptom of APS. So are migraines. You may want to read up on this so that you can ask about this autoimmune disorder, which can occur by itself or in conjunction with Lupus.

Have you seen a nuero about the headaches and the tingling sensations? There are so many good drugs that could rein in those migraines.

I hope you are feeling a bit better soon. Rest as much as possible. Keep posting here.

1tiredmama
 

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Discussion Starter · #6 ·
yes i saw a neuro about my headaches. he said that ppl with headaches like mine they usually give older class antidepressants but wouldn't give me any because of my bipolar disorder and what my psychiatrist may give me for my BP. about my tingling, he said well...probably hyperventilation does that the most. well, i did notice a change in my breathing in the summer but the tingling started before that. i do have neck problems tho. my gp is thinking my breathing problems are due to my reflux, but, she never did listen to my chest. thanks for the info about apa. will look it up. chickadee
 

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Hi and welcome to the site. I hope you get some answers from the blood tests. Do you keep a symptom diary and take photos of any rashes etc? Note fevers and pain, etc. This can help you get a diagnosis.

Deb x
 

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Hold on there! Are you telling me that you went to a doctor for migraines, and left without a prescription for something??? There are many options besides ADs and the newer migraine meds. I took something called Tizanidine each night before bed. It is a short acting muscle relaxant. It changed my life.

I was having headaches weekly that were lasting for 3 and 4 days. I could barely function. After a year of no headaches, I stopped the medication. I rarely get migraines anymore, certainly none that go on for days on end. You might want to consult another nuero. There must be some options for you. :rolleyes:

1tiredmama
 

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Discussion Starter · #9 ·
i keep a symptom diary now.. but didn't think to take photos of my rashes. will do that. and no, i didn't get anything from the neurologist...'cept use some ice or heat... and not too many tylenol or you'll get rebound headaches. I've had headaches before, but, these are definitely different from those. started in January. well i had some pretty rotten ones last fall, but, in january they started being really sickening. and they are every day. truly awful. will ask about the tizanidine. thanks... chickadee
 
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