I'm so confused and helping that someone could give me some insight

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susan1
Regular Member


Date Joined Dec 2009
Total Posts : 80
   Posted 8/6/2010 2:06 PM (GMT -7)   
Hello,

I have posted on here before and you all have been a wealth of information (even more than my Drs. :-))

Anyway, I am curious if anyone can shed some light on this.

I have been having traveling burning sensations throughout my body. I did have some vitamin deficiencies and other than the low iron, they have all been corrected and I am still supplementing.

I have had MRIs recently in January & in July of my brain, lumbar, and cervical spine. Also had an MRA of the brain. I have had an EEG, EMG/NC too. Ultrasound of the spleen, gallbladder, pancreas, and kidneys.

These are my ONLY findings:

+ANA (sometimes it is negative) I've known this for 12+ years
+ACA again positive more than twice and have known for 7+ years
MTHFR A1298C gene
spleen - mildly pronounced at 13.2 cm

Here my my symptoms since November of 2009:
traveling burning sensations
paresthesia mainly on the left side, but it does happen on the right too
weakness in limbs
chronic fatigue
costochondritis/pleurisy
recently TERRIBLE GERD (burning inside my esophageous) and in my back and throat.
my groin area recently has started throbbing on both sides

My neurologist told me I had a certain form of anxiety and that is causing my symptoms.

This newest GERD type symptoms are scaring me because I am thinking I have inflamation going on in my body, but the SEDRATE is good and so are all the lupus markers. I'm so confused. Can anyone shed some light on what they think.

Thank you in advance for all who read and post to this. I'm so exhausted. I've seen cardiologist, neurologist, two rhuematologist and of course my GP.

Thank you kindly & God Bless
Susan
41 years old
Married with one child
 
Waiting on diagnoses:  Fibromyalgia, MFS or MS. 
Abnormalities:  Vitamin D deficient, B12 Deficient, +ANA, +ACA        MTHFR heterogenous gene A1298C
 
Rheumatologist ruled out lupus on 01/15/10

"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."  Joshua 1:9


susan1
Regular Member


Date Joined Dec 2009
Total Posts : 80
   Posted 8/6/2010 2:08 PM (GMT -7)   
Oh, and feels like my lungs are inflammed too!!

Thanks
Susan
41 years old
Married with one child
 
Waiting on diagnoses:  Fibromyalgia, MFS or MS. 
Abnormalities:  Vitamin D deficient, B12 Deficient, +ANA, +ACA        MTHFR heterogenous gene A1298C
 
Rheumatologist ruled out lupus on 01/15/10

"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."  Joshua 1:9


challenged nurse
Regular Member


Date Joined May 2010
Total Posts : 69
   Posted 8/6/2010 6:28 PM (GMT -7)   
Sorry that you are not feeling well. I have some of the same symptoms but am in limbo on any disease process. I hope that they find out what is wrong but keep us posted. Maybe someone will come along with more information. I'm not sure what is going on.
DX: Lupus(UCTD), Asthma, Mitral Valve Prolapse, Heart Murmur, Anemia, Vitamin D def., B12 def, Hypertension r/t lupus, TIA, muscle weakness, numbness, tingling, headaches, night sweats, IBS.

Meds: Plaquenil, Prednisone 10mg, vit d3 50,000 weekly, b12 injection, Prevacid, Tramadol, Align, Kapidex, Amitza, Miralax, Vaseretic/HCTZ, Aspirin.

I can do all things through Christ that strengthens me.

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/6/2010 8:52 PM (GMT -7)   
I would see a different rheumy and get a second or third or tenth opinion and make sure the rheumy is a lupus specialist.
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, Sj√∂gren'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
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