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king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 3/4/2009 8:23 PM (GMT -7)   
Hi guys, I am back. You may remember me by my signature info. Well my stabbing pains, muscle twitching, EXTREME joint cracking, random numbness has gotten a lot better. However, over the past wks I have had an upper left ab pain, about an inch below my breast, also with that on and off again burning in the middle. I do have a history of GERD but the pain on my left is not a GERD type pain. Went to see my dr, and my lipase was slightly elevated, this was a wk ago. Of course I panick as my dad just died of pancreatic cancer so I am so scared that is the cause of my slightly elevated lipase and pain. Well, had an ab ultrasound and the pancreas looked okay, had a CT with dye, the pancreas looked okay however the lipase continues to be elevated and I continue to have pain. I will have an EUS done soon to 110% rule out PC.
 
I wonder however, could lupus cause a slight inflammation in the pancreas?
 
I do not have a dx of lupus, but when I started having my odd symptoms (extreme joint cracking, etc) this summer after my MRI and EMGs were fine, I thought maybe its lupus? However, all my labs for lupus have been fine, ANA, antismith.. Does lupus always show in the blood? If not, how long does it take?
 
If anyone could provide me feedback I would really appreciate it.
----------------------------------------------------------------------
33 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
LYME-TESTED POS BAND 31 AND IND ON 34 41 IGM THROUGH IG IN PALO ALTO, GIVEN CLINCAL DX ON 11/17-ON DOXY, ZITHRO, FLAGYL
 
 
 
 
 
 


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 3/5/2009 7:59 AM (GMT -7)   
Hello!

I am sorry to hear that you are in such pain - and believe me, I DO understand. After going to the doctor at the endof last August, then moving on to a gastro, then having a LOT of tests done, I was finally diagnosed with lupus induced pancreatitis. It took awhile, but taking two aciphex a day (12 hours apart) does seem to help. Unfortunately, I have been getting headaches (side effect) since starting the aciphex. To test that theory, I went off the aciphex for a couple of weeks and the headaches stopped, but boy did the abdominal pain return. So, back on the aciphex and I try to ignore the headaches.
Apparently this is a less common little game that lupus likes to play, but it does happen. I also ended up on a pred burst that seemed to get everything back under some sort of control.
Hope you are able to find some relief. I'll be thinking of you.
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 3/5/2009 10:28 AM (GMT -7)   

Thanks so much for your response. How long did it take for you to get dx with lupus and what results were off that led to the dx?

 

What symptoms did you have that made you think you had lupus to start off with. Do any of my other symp sound familiar?

 

Grasping for straws as to why my pancreas could be inflammed outside of cancer...I would think my CT scan and or US would have shown something.

 

 


----------------------------------------------------------------------
33 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
LYME-TESTED POS BAND 31 AND IND ON 34 41 IGM THROUGH IG IN PALO ALTO, GIVEN CLINCAL DX ON 11/17-ON DOXY, ZITHRO, FLAGYL
 
 
 
 
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/5/2009 12:58 PM (GMT -7)   

Hi King,

I'm sorry to hear about your dad's passing.

You were given a positive diagnosis of Lyme's?  That would explain your symptoms. Lyme Disease and Lupus have near identical symptoms and problems. 

Also, all of your symptoms sound a lot like Fibromyalgia. GERD, migraines, muscle twitches, etc, are very common in Fibro.  Fibromyalgia would also fit because all your blood tests are normal.

It doesn't sound like you have Lupus. The fact that you have been positively diagnosed with Lyme's is huge.

 

 


I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 3/5/2009 1:13 PM (GMT -7)   
No it was not a positive dx, it was clinical--based off my symptoms...so no lyme.
 
I was thinking I could have lupus but I guess my sx do not sound like that? I was hoping my inflammation of the pancreas coudl be caused by that.
 
Also I have been getting little sores in my mouth..
----------------------------------------------------------------------
33 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
LYME-TESTED POS BAND 31 AND IND ON 34 41 IGM THROUGH IG IN PALO ALTO, GIVEN CLINCAL DX ON 11/17-ON DOXY, ZITHRO, FLAGYL
 
 
 
 
 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/5/2009 6:25 PM (GMT -7)   
I am sorry to hear of your dad's passing. Lupus is very hard to dx, there are so many other illness' that mimic lupus and it ends up being a big puzzle that the doctor pieces together over time, usually years. Lupus is not something that's dx quickly, not unless you have serious organ involvement. Doctor's want to be 100% certain you have it before giving you a dx like that.

There is a criteria list doctor's use to help them dx lupus. Usually if you have at least 4 of the 11 they will consider lupus. Take a look at this link:

www.lupus.org/education/topics/outcome.html

Keep researching and asking questions and I hope you get some answers soon.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

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