Possibly lupus?

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bookworm71493
Regular Member


Date Joined Apr 2011
Total Posts : 34
   Posted 12/7/2011 1:39 PM (GMT -6)   
Hello everyone!
MY name is Krysten, I'm an 18 year old nursing student. I was diagnosed with colitis in Dec 0f '10 and recently have been having a lot of other health problems that no one can figure out.
I've fainted 6 times in 3 months, despite never having fainted before. There has also been some possible seizure activity, but that's still inconclusive. So I've been seeing a nuerologist, and he just slapped on a diagnosis of epilepsy while my cardiologist says its postural othorstatic tachycardia syndrom. So I'm not being treated for either at the moment.
Also, I've always has chronic fatigue and joint pain for the past 6 years or so, and have always been told its growing pains. Well, I haven't grown a centimeter in 4 years. So, I've also been seeing a rheumatologist because my GI said it sounds like arthritis. But the rhuemy said its not, it just sounds like I need more sleep. Um? Then, she saw my blood results and my ANA was elevated, so now she thinks lupus, but I don't see her again for 6 months.
Basically, I'm tired, in pain, confused, frustrated and stressed over all of this because no one has any idea what's going on.
*Sigh*
I was wondering if anyone has had a similar experience with misdiagnoses and being told nothing is wrong and such.
Thanks for reading my nonsensicle ramblings.
18 year-old female
Dx: October 2010 Lymphocytic Colitis
Tried: Entocort, Prednisonex3(60 mg then tapered, never again), Pentasa, Bentyl, Lomotil, Pepto Bismol, Immodium, Dicychlomine, Chloestrymine, Remicade, Creon, Pepcid
Currently: Prozac (30 mg), 6mp (62.5 mg), Omeprazole (80 mg), Yaz, Ativan (.5 mg), Zofran (4 mg), Florinef (.1 mg),MutliVitamin
As much as this stinks, it could always be worse

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 12/7/2011 2:36 PM (GMT -6)   
Lupus is an elusive disease and very hard to diagnose, so many of us suffer for years in the kind of limbo-land you are talking about. It isn't at all unusual.

"Growing pains" at your age may be more internal, like bones strengthening and that sort of thing, rather than exterior changes like height.

Are you sleeping well when you sleep? Do you wake up refreshed? Deep restorative sleep makes a huge difference to fatigue. Also eating well can help a lot. Lower-fat proteins such as tofu, fish, and fowl with lots of vegetables (esp. green ones) and some fruits -- real food, not items prepackaged. Hard at your age, but helps a lot. I felt a difference after only 2 weeks. Also some regular exercise -- even walking 30 minutes a day can help. These 3 things: sleep, food and exercise can make a huge difference and can help separate out real disease from growing pains, needing more sleep, fainting, etc. - and if you show doctors what you are doing in these areas it can change how serious they take your symptoms, if they still remain.


And then the 3rd major component is stress -- do you tend to worry about things? Sometimes exercise, or a self-help book or talking to a therapist can help teach you ways to handle stress so that it doesn't "come out sideways" with physical symptoms.

That said, you might consider a second opinion from a rheumatologist. Get a referral from the local chapter of www.lupus.org - use the website to find the local chapter, get in contact with them and see which Drs are active on their board of directors. These are the Drs most interested in lupus and similar diseases. Just pick one -- they probably won't recommend an individual, but any rheumy on the list that fits with your location & insurance will probably be helpful.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 12/7/2011 3:34 PM (GMT -6)   
Hi Bookworm, had a similar thing recently. I have Crohn's and after a really bad flare at end of last year they put me on Humira which has some pretty evil side effects. All was fine for first 4 months then I tailed off the prednisone and suddenly my joints seized up and the muscle/nerves around them were so painful in would nearly bring me to tears to standup/sit down or climb stairs. First thought it was just withdrawal of the pred but after 4 weeks it was getting worse not better. So eventually got referred to a rheumy who spent the whole appt telling me I couldn't possibly have Lupus or arthritis or antiphospholipid syndrome (the last two had already been dx years ago but he said not possible) as didn't have 'normal' symptoms. I have heard this so many times, for some reason my body doesn't have symptoms like it tells them in their medical books.

Well, my rheumy said no reason to see him again until Jan next year as blood tests and MRI scan wouldn't be back until then. Saw my GP 3 weeks ago and she said she has the results of bloods back and they were positive for Lupus, but still don't see rheumy til Jan so am on oxycodone and gabapentin and amitriptyline for the pain. Will be interesting to see what he says.

Don't give up looking for an answer as from what I have seen other people have posted on here some have taken years to get a dx.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, numerous surgeries for abscessses & strictures. Humira - very bad permanent side effects incl joint pain, hair loss, fatigue & nreve damage. Azathioprine, immodium, simethicone, fludrocortisone, oxycodone, gabapentin, tramadol, amitriptyline, Folic acid, vit d & calcium.

whatdabuck
New Member


Date Joined Dec 2011
Total Posts : 2
   Posted 12/12/2011 7:52 PM (GMT -6)   
Hello!
I'm a 20 year old female that started having severe health problems about 7 months ago that sound similar to yours. I started fainting a lot and having bad chest and abdominal pain which ended up with me getting my gallbladder removed. My GI doc did an ANA that came back positive so he sent me to a rheumy and a few months later I was diagnosed with Lupus. That was back in September and I'm still having a lot of joint/muscle pain and fatigue not to mention a whole slew of other problems. But just wanted to let you know that you're not the only one! Getting a diagnosis is supposed to be the hardest part (though I'm having a lot of trouble responding to treatments). I was told for months that nothing was wrong with me, that it was all in my head, or even that I was just trying to get pain pills. I was threatened to have anti-anxiety and anti-depressants prescribed and was treated with the utmost disrespect by doctors, and I'm a premed student. I noticed you're nursing so I'm sure you have some idea of what's going on too and that it's physiological not psychological (and not that you need more sleep...I hate that comment.) I would press to see your rheumatologist more often than 6 months since I understand the awful waiting period where you feel like nothing's going to get better until you see the doc again, but then when you get there it just seems really disappointing. What other symptoms do you have? And what kind of treatments have they tried, as well as what testing have they done? Believe me, I know how frustrating this is, but you're not alone. Don't give up and hope you feel better! Don't hesitate if you have questions.

-Andrea

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 12/12/2011 9:14 PM (GMT -6)   
I whole-heartedly agree that neither anxiety or depression cause Lupus, and that you need to be treated for Lupus with medication.

I'd also like to say that both conditions can arise FROM lupus and/or from Lupus medications. If they do arise, please don't resist treatment, they can help more than you might guess. At that point, passing up what may be an opportunity to feel better by ignoring suggested medication may do more harm that good. Just saying.

Hope all get proper diagnosis and feel better soon!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Lynn0704
New Member


Date Joined Dec 2011
Total Posts : 1
   Posted 12/14/2011 6:12 AM (GMT -6)   
Hello, I am a new Member looking for answers!!! I have just recently been discharged from hospital following alot of blood tests, I have no neutrofills in my white cell count, this was monitored over the week I was in hospital, the highest reading I had was 0.4 but then it went down to 0.1, they have said that all my other blood tests were normal and that they couldnt see that anything was killing off the white cells. I had a Bone Marrow Biopsy done on my day of discharge and get the results tomorrow, (it has been a long 10 days awaiting this). My 2nd Cousin has been diagnosed with Lupus, I have terrible itchy skin mainly when I am in bed, I have hot sweats, my joints ache, I dont get this butterfly rash that I have been reading about on this site, but I do get what looks like pinches on my arms, legs and face, where it looks like blood has come to the surface of my skin. Reading posts on here has made me think that I am facing Lupus???

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 12/14/2011 10:22 AM (GMT -6)   
Your symptoms don't quite match with lupus in my mind (but that certainly doesn't mean they can't be lupus!). I'd wait on the blood marrow test, as it sounds more like a blood/bone marrow issue. And if nothing comes of that you can see a rheumotologist to rule out lupus if you still feel it might be the cause.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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