I'm a newbie...and I'm frustrated.

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Regular Member

Date Joined Sep 2008
Total Posts : 26
   Posted 9/6/2008 10:23 PM (GMT -6)   
Well, I've been lurking here for a few weeks. I haven't been feeling well in a long time, and every week, I get worse and get a new symptom it seems. sad

I guess I'll give you all a brief rundown. I'm 3 weeks shy of turning 27. I don't have a lupus diagnosis. Or any diagnosis for that matter. I've always not felt good. As a teen, I had pretty bad joint pain at times. This has continued throughout the years. I would have flares of what I believed to be IBS. I went through some really painful stuff, but the doctor said it was just a virus. I apparently had a virus that lasted years. rolleyes I've had a sun sensitivity for years. At first, it was more like the reaction that comes along with photo-contact dermatitis. Now, it's hives and angioedema. yay! (sarcasm) I've never had hives before, and I've had these for longer than a week. And my skin has become extremely sensitive, so anything that touches it causes a welt and extreme itchiness. I went to the ER last week because my lip had swollen so much and the hives weren't going away...oh, and because I had the worst acid reflux attack I've ever had.

Let's see what else I've experienced. Difficulty swallowing, excessive urination, swollen parotid glands, extreme fatigue, muscle aches, chest tightness, swore jaw and gums, random swollen lymph nodes, excessive thirst. I thought I had diabetes at one point because I couldnt stay out of the restroom. I was going around 60 times a day. Went to an urgent care place. Went to a GP. Went to a urologist. The urologist referred me to a Rheumatologist. My appt is on the 16th. I've been waiting so long for this appt, and I'm feeling so bad lately, that I'm thinking I won't make it there.

I'm pretty scared, but I'm mostly tired of feeling ill. I don't know if I have lupus. I won't be devastated if i do. I'd be quite relieved to know that there is something wrong with me, and that it's not all in my head....and that I'm not a hypochondriac nor exaggerating how my symptoms.

also, I had a some tests done at my GP 2 weeks ago. Like all the typical autoimmune tests. They all came out normal, and the results were faxed to the rheumy that I'll be seeing. And I do have family with autoimmune disorders. My dad and a few members of his family have gout. My mom's sister has sjogren's and ulcerative colitis. And another one of her sisters had a thyroid problem. My mom, the aunt with ss/uc, and my grandmother have mitral valve prolapse.

Well, that's my story. tongue

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 9/6/2008 11:39 PM (GMT -6)   
Hi Honerable mention, So what seems to be the problem? It sounds like you are perfectly fine to me LOL. Just kidding. My goodness you have been through alot. I know I have waited up to 5 months to see a rheumy before. Just to spend 15 mins. with them and they come up with some new strange thing that they say is different from what the last rheumy said. It's so hard to get a diagnosis. So don't be frustrated if they can't tell you anything. They do at least neeed to treat your systems. and if they don't find another doctor. ASAP. I hope you write down everything you mentioned here. all your family ever sniffle every ache, when where how long. I'm glad you found the group. I just mostly wanted to say hello and welcome. I'm sure others will be around tomorrow. to say hi and help you through this.
Look forward to seeing you post again soon
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?

Regular Member

Date Joined Sep 2008
Total Posts : 26
   Posted 9/7/2008 12:31 AM (GMT -6)   
Thanks okie.

I'm hoping the rheumy will be unlike the rest of the doctors in my life.

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 9/7/2008 1:15 AM (GMT -6)   
HonorableMention --

Welcome & Great Username!!

Check out the "Lupus Resources" thread - it's the second from the top of the page, if you haven't already. It has suggestions about what info to take to a new doctor - basically write down all the symptoms you've had, whether you think they are connected or not. Something you think is ordinary or unrelated (like that earache you get every time you have a period) might be the final clue to help the doctor decide on a diagnosis.

Also check the links in my signature - they'll give you more information on lupus - but also remember the dr is the expert. I personally try NOT to suggest any possible diseases to the doctor - I want them to run thru all the options they've been trained in, not to immediately narrow in on my idea, as I'm not the expert.

Keep us posted, and feel free to ask more questions between now & your appointment.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 9/7/2008 9:37 AM (GMT -6)   
Hi and welcome. I'm sorry you have felt sick for so long and still don't have a diagnosis. Being in diagnosis limb is a difficult place to be and lots of us have been there so we understand. I hope your rheumatologist appointment goes well. Make sure you write down every symptom, even the ones that might seem small or unrelated. Also, please check out the resource section on this forum - there is a list there of helpful hints for new members.

I hope you get a great rheumatologist who can give you some idea as to what might be causing your symptoms and I hope you'll keep us updated on what you find out. It can be so frustrating when you feel so rotten but nothing much turns up on you labs. For a while, most of my labs were normal, but over time I had more and more abnormal results which finally helped me get a diagnosis.

I'm glad you joined us. Please ask any questions that you have - we have a great group of very supporting people here.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/7/2008 9:40 PM (GMT -6)   
Hi HM !!

Welcome to the forum. So glad you found us. The others gave you some great info! I hope you are finding lots of info in the links that Lynnwood and Hippi provided!!

I hope you make some good friends here!!

Will be watching for your updates!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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