Afraid To Go Back To Dr: I May Have Lupus HELP!

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Regular Member

Date Joined Jul 2010
Total Posts : 467
   Posted 7/8/2010 9:53 PM (GMT -6)   
Hi, im new here. My name is Jayla im 24 years old and I work in the legal field. Nice to meet you all. Here is my story.

It started  4 years years ago., I was about to turn 21 and I woke up one morning and I could not move my arm. I did not do any heavy lifting also it was much more than a "oh I just slept in the wrong position" type of situation. My arm was in a sling for almost a week and no one knew why. Roughly a year later I had it happen again, I could not move my arm for no apparent reason. Again my arm went in a sling this time for a few days. I have always had strange things happen to me.

One summer I got a rash on my face it lasted 3 months then went away, the next summer I got the same bizarre rash on my face it last this time a month. I do have eczema so I contributed the strange rash to  this. I have had severe chest pains for 8 years now. I get them especially bad when I breathe in or if I move my body too fast when changing positions in bed. I have has numerous EKG test done and not one DR can find any heart condition.

I also get sharp pains through out my body (have been getting worse lately). For example I will be lying down or standing up and get sharp pain in my thigh or in my arm or hand, or wrist out of no where. Sometimes I will touch parts of my body and it will feel like im touching a bruise.

Also my lymph nodes become severely swollen. I almost had to have a biopsy surgical procedure done, I went to my pre surgical examination and the DR called it off due to my lymph nodes no longer being swollen. Now they are swollen on and off but lately it has been mostly on.

I get mouth ulcers frequent I probably have 10 or more a year. I also get severe head aches at times it feels as though my brain is bleeding and behind my eyes hurt so bad I cant keep  them open. I have also been a tired and weak feeling person in general. During times of stress I notice my symptoms become worse (i.e. when I was in school -finals/ stress at work- became severely ill during recent break up whole body was in pain, I couldn't move, lymph nodes severely swollen, fever, I contributed this to being a flu)

I went to have a blood test done 2 years ago and I tested positive to an array of diseases- Lyme Disease, Connective Tissue , Scleroderma I was put on medication for Lyme but it turned out I did not have it, the other diseases came back as false positives. I had a ANA test done and it came back positive. My DR was awful and did not really explain if I have Lupus or not. She said I did not have enough symptoms for treatment at the time (at that time I was tired alot, pain in joints and chest pain)  and sent me to a Rumatologist. I ended up losing my health insurance, I stopped going to DR I was suppose to follow up 6 months later with, it has been now  over 2 years.

I do have insurance now but im scared to go back. Sometimes I think I just imagine all of this all the symptoms are so strange and random. I also have had stomach issues lately not like an average stomach ache but it just feels strange like I drank motor oil plus my ankles have been feeling swollen lately.

Does anyone else feel like this? Is it just me?

Should I go back to the DR?

I know this post was long, thank you so much for taking the time to read it and responding.

Post Edited (LAWCHICK) : 7/8/2010 9:01:33 PM (GMT-6)

Forum Moderator

Date Joined May 2005
Total Posts : 6931
   Posted 7/8/2010 10:08 PM (GMT -6)   
Glad you found us, Lawchick, Welcome!

Your symptoms would certainly fit into any of several autoimmune diseases, including Lupus, but could also be signs of something else entirely. A positive ANA generally indicates an auto-immune disease, but they are primary differentiated by symptoms.

A doctor whole says both "You don't have enough symptoms to treat" AND "go see this rheumy" is contradicting herself. My vote is is keep records of all this kind of thing - maybe you are having symptoms more often or less often than you think - and see how much this is really bothering you.

Then find a rheumy who is familiar with Lupus - s/he'll also know about other autoimmune diseases. Check out, find your local chapter, find the list of drs who participate on their advisory board - those are the ones who are interested in lupus. If you want a personal referral you'll have to go to a support meeting and ask people outside the meeting, can't direct you to a particular dr.

My feeling is that if this bothers you enough to post about it, then it bothers you enough to chase down what is really going on.

I hope you feel better soon!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Post Edited (Lynnwood) : 7/8/2010 9:13:22 PM (GMT-6)

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 7/9/2010 7:25 AM (GMT -6)   
left untreated autoimmune diseases can do serious damage to your body, heck even treated that can happen. I vote you make a symptom list and see a lupus specializing rheumy- a lot of rheumy's are not lupus specialists and so you have to be careful, if most of their patients are older then they are more of a arthritis specialist than a lupus specialist. Please take care of yourself, this means resting when you need to and seeing a doctor about what is happening. The fact you posted means you know you need help and admitting that is the first step toward finding out what is wrong. I wish you lived near me in MI because I have a great doctor. I also know a great doctor in IN because my old doctor moved there.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Regular Member

Date Joined Jul 2010
Total Posts : 467
   Posted 7/12/2010 12:31 PM (GMT -6)   
Thank you for your reply. I just could not believe how uninformative my DR was. She was just like your ANA is positive but you don’t need treatment yet for Lupus and sent me off with so many unanswered questions. I will be going back to a new DR soon. It is just so scary knowing there is something wrong and being confused about what that something is and then going to the DR to find out.
Thanks  again.

Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   Posted 7/12/2010 2:22 PM (GMT -6)   
you should see a neurologist and someone for autoimmune. Neuro should check out for myasthenia gravis, a rare autoimmune muscle disease. I'm actually being tested right now for it. You sounded like me lol
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis, Anxiety
Medications:  Tri Nessa, Percocet, Metformin, Prednisone, Cingulair, Albuterol, Pro-Air, Morphine, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops, Percocet, Immuran, Alvesco, Allerga, Gabapentin, Visteral  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl Undergoing Chemotherapy Taking Lorazepam (Ativan) For MRIs and Anxiety, Surpressed Immune Sytem

New Member

Date Joined May 2010
Total Posts : 3
   Posted 7/12/2010 2:23 PM (GMT -6)   
Everything you described is what I suffered when I was first diagnosed. I was 19 when they first discovered the possibility; 21 when a firm diagnosis could be made. I too felt like most of the symptoms were in my head, or I felt like what I was feeling was what everyone must feel - mainly because I didn't look sick. As said above by others, I too think a Rheumy is your best option; they are definitely more experienced with recognition of the symptoms. I recommend sooner rather than later; it's amazing how much better the treatment meds can make you feel. Good luck!

Regular Member

Date Joined Jul 2010
Total Posts : 467
   Posted 7/12/2010 3:44 PM (GMT -6)   
BonRu it makes me feel better knowing there are other people that have unfortunately gone through the same thing as me. I guess maybe that sounds weird but I’m sure everyone on this forum understand what I mean. The feeling is just so strange and so random it is hard to explain to people who do not feel the same.

I am going to book an appt with a Rheumatologist and go from there. I hope you are doing well.

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 7/13/2010 8:27 PM (GMT -6)   
I just want to put out there that I felt much worse in the time before I was diagnosed then I have ever felt since then.

Unmedicated autoimmune diseases are devestating-they take away your life. Medication helps. Now I was lucky to never be that sick again but even if it is just that you have more good days during treatment then before treatment-or just fewer really bad days-isn't it worth it.

Having a doctor say the word Lupus isn't what makes you have Lupus. If you have it you have it-getting treatment for it can be life altering in a good way.

(I have RA not lupus)

Veteran Member

Date Joined Feb 2009
Total Posts : 1810
   Posted 7/20/2010 6:26 PM (GMT -6)   
It won't go away on its own. Get a new rheumatologist and get further testing to see what's up. You have to get a dialogue going with your doctor about medication. Good luck with it and let us know what happens when you visit your new doc.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil, omeprazole for reflux, wellbutrin, 5 mg prednisone/day.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA, LOTS of joint pain followed by a recent set back with the colitis.

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