So many question's....

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New Member

Date Joined Dec 2007
Total Posts : 4
   Posted 12/5/2007 8:00 PM (GMT -6)   
Hello to alll...Let me first say I have not been diagnosed... yet. But, I truly believe I have Lupus. Let me give you a little background on myself. Iam 28 year's old, married for 9 nine year's; and a proud mommy to 5 children. :-) I did miscarry 6 year's ago also. So, I should of had 6. sad All my problem's really started right after the birth of my 4th baby. I noticed my face looked red. It streched from my cheek's, over my nose anf to the other side of my face. I did'nt think to much about it?Well,
I found a lymph node in my neck and a odd spot on my tongue all in the same month...September 2005.I had the node looked at and was told to keep a eye on it. I went to the dentist for the odd spot on my tongue and eventually had it biopsied. It turned out to be a benign neurofibroma tumor that was deep down in my tongue...weird... I know? Well, after that the neck node was still hanging around. This was January 2006. I saw family doc again and was advised to see a seurgeon. I did and was told that it felt benign and nothing to worry about.To small and moveable to biopsy. February 2006 go to OB for annual and have them feel it also. Told once again... feel's benign and is still small. As Iam driving home I find another node on the other side of my neck. I keep a eye on them both and in April 2006 see a ENT. He examine's me and also say's benign stuff...nothing to worry about.All summer  everytime I was outside exposed to the sun, I felt like I had the flu. I would get a real bad headache, feel nauseated; and real tired...I mean exhausted. So, not to long after I start having problem's with my monthly cycle's. about a week to even a couple day's before, I start getting sick...literally. Nausea,vomiting, headache's, depression; and my cycle's got lighter and shorter. Nothing of the norm for me? I can actually say I felt like I was dying a little more each month with each was horrible. I also started having these episode's of complete exhaustion. I would be sitting here one minute then feel completely drained the next. Like I hit a brick wall? I literally could not function. I would have to go lay down. Same time...start to notice reddness on face is more prominent. November 2006 I notice Iam bruising more than normal and find what looks like petetchiae. I see OB and he does blood work. Thank God was all normal. :-)   He feel's thyroid and feel's I need a scan done. Had that done and result's are normal...just a enlarged thyroid. Well, November 2006 roll's around and guess what...Iam pregnant...again. :-) Iam going to stop here and start new post...sorry alot of  info. tongue

Regular Member

Date Joined May 2006
Total Posts : 236
   Posted 12/5/2007 10:14 PM (GMT -6)   
Mommy25 - Sorry to hear about your struggles. It may be the beginning stages of lupus or another inflammatory disease or it may be coincedental. Originally, I had similar symptoms and also neurological symptoms. It took years to develop into diagnosed lupus although the doctors felt it may have been borderline lupus. Turns out they were right, but it could have turned out they were wrong. I suggest having your ANA's checked and get some bloodwork done to see if is a possible connective tissue disease or some thing else. My ANA's original showed a slight rise but it now is much higher. This disease is tricky and mimics other diseases. For me it had to hit multiple organs and CNS changes before I received a diagnosis. After that, one month they would say lupus and the next not. Finally, there is no denying the lupus diagnosis, but it is 11 years later now and I have a more severe case. Even if it suggests lupus, you may have a mild version of the disease. Some have it mild others more severe, and unfortunately, no one ever knows which way the disease will develop. I would just do the preliminary tests and keep it in the back of your mind as a possibility. Also start documenting every time your are diagnosed with something no matter how mild or severe. Eventually, it will start painting a picture of what disease or non-disease is present. It doesn't hurt to be proactive.

Congratulations on the new comer. Sounds like you will have your hands full, if not already so. You have been truly blessed by the large family and I pray your health will be blessed as well. Wish you the best - Kristin
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  

New Member

Date Joined Dec 2007
Total Posts : 4
   Posted 12/6/2007 9:51 AM (GMT -6)   
Thank's so very much Kristin! I really apprecaite your advice and concern. So, nice to know someone is willing to listen and someone care's. I have been so worried here lately that all this might be something serious? Ecspecially with the swollen lymph node's? But, on the other hand I have seen so many doctor's that have said they feel benign. Plus, the bloodwork has all been normal. I figure if I have something serious like lymphoma, I would be really sick by now? I mean, I have had at least two of the lymph node's for over 2 year's now. They have'nt changed size or shape. Just so confusing and worrisome. I currently don't have insurance, so, I can't see anybody. I'll definatly keep you posted. Thank's again. Iam glad I have found this board and you all. God Bless.

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 12/6/2007 11:10 AM (GMT -6)   
More info from mommy25:

So, in November I find out Iam prego. [img]/community/emoticons/smile.gif[/img] This pregnany was alright...I guess? I was sick for the first 3 month's. I was really tired, I mean real tired. I would get up and then be back in bed 2 hour's later. My joint's hurt real bad. I had a hard time was painful. Well, I have Connor on July 28th,2007 [img]/community/emoticons/smile.gif[/img] , it was the most easiest and painless birth out of all 5 of my birth's. So, right after, I start with the headache's, being real tired again, eye problem's, swelling in my leg's, mouth sore's which I had before I was pregnant. That's something I for got to mention. I have been getting these sore's/patchy area's on my tongue since the surgery for the tumor in my tongue. They are very painful, red in the middle with white around it; and are alway's on the top and/or side of my tongue. I looked up the symptom's online and it suggest's geographic tongue. Is this common in lupus? I just had this happen this past week but with a sore on the roof of my mouth this time...something new? I also have ringing in my ear's and some dizziness. I have been having pain in my wrist's, finger's, ankle's;and hip's. So many symptom's? I currently don't have insurance. Trying to get something lined up though. Do I have any of the symptom's of Lupus? I would really appreciate any answer's. Thanks ladie's. God Bless,

<moved from other topic to here>

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 12/6/2007 11:51 AM (GMT -6)   
Welcome Mommy. I'm so sorry to hear about all you have been through and how sick you have been. A lot of your symptoms are consistent with lupus, but it's a very hard disease to diagnose because these symptoms are present in so many other diseases - lupus is often called the great imitator. Moth sores are one of the sympoms of lupus. I have a lot of problems with my mouth and tongue because of lupus and I also have a secondary condition called Sjogrens which can cause severe dry eyes and mouth. I also have geographic tongue but don't know if that is related to lupus.

Hang in there and don't give up. Your fight to find out what is wrong is going to be harder because you don't have insurance. It can take a long time to put the pieces of the puzzle together and get a diagnosis - it can take many years, but the most important thing in the meantime is to find a doc who will at least start treating your symptoms.

Just know you are not alone. A lot of us have been in diagnosis limbo.

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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New Member

Date Joined Dec 2007
Total Posts : 4
   Posted 12/6/2007 12:05 PM (GMT -6)   
Thanks so much hippie mom! I really appreciate that!! Iam just so worried that I have something more sinister going on? But, after all the doctotr's who have seen me and it has been two + years with the neck node's...I guess I should'nt worry soo much. Thanks again! Iam glad I have found this board with you all who actully care. God Bless. :-)

Regular Member

Date Joined Aug 2005
Total Posts : 194
   Posted 12/9/2007 2:07 AM (GMT -6)   
I found out through a skin biopsy that I have lupus. Amazing what they can tell from a simply biopsy. Think about it. Actually, being diagnosed with something real is almost a relief compared to going around feeling like craq and wondering. Hang tough.
Reflection and experience supply us with wisdom; study and labor supply us with learning; but wit seizes with an eagle eye that which escapes the notice of the deep thinker and elicits truths which are in vain sought for with any severe efforts.

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 12/9/2007 9:28 AM (GMT -6)   
Greetings Mommy25! I am so happy you found us - this group has a wealth of experiences to help you as you search for answers. Have you looked through the resources section of this site? There are many links with symptom lists and other resources. Hopefully you can line up something insurance-wise so you can see a rhuemetologist for more thorough testing. Even with a rhuemy, however, a diagnosis can take months or, even, years. The suggestion to keep a diary of all your illnesses and symptoms is excellent and will help speed the diagnosis. I will keep you in my thoughts and prayers!
Audrey Ann
Lupus and RA and LOTS of Medications!


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