View Full Version : Sound familiar? Scared

09-13-2009, 10:56 PM
Hi all, I have posted before but here is a brief breakdown.

Last June I started to get stabbing, zinging pains that would jump around from random toes, fingers, ankle--anywhere from one min to hrs. At the same time I started to get EXTREME joint cracking daily, and odd buzzing feelings in my leg on and off. A few wks later I started to get thousands of muscle twitches all over my body. Then a few months later random numbness in my hand and dents and horizontal lines all over my nails. I was under a good amount of stress at the time. Had TONS of labs, MRI, EMG-all clear. These symptoms lasted for months when it was extreme, they have reduced by 70% so not as bad but still there,s till have musclet twitching daily though not as bad.

In Feb I started up have epigatric pains, turns out my pancreas is inflammed. My dad died of pancancer last yr (hence the stress) so I have been terrified its that. My ca 19 which is a tumor marker has been elevated some too, though have been told inflammation can skew that. I have had a CT, MRI and EUS and all clear. Though I know alot about pancan and often it does not show up. I go in for another EUS next wk.

Now I am getting these bumps on my scalp, the size of the head of an eraser. Almost feels like big pimples and tender to touch-- I have 15 of them right now.

Oh for yrs the skin btw my nose and upper lip has been stained redish--I have tried laser and everything but it remains.

Finally, I did get a livedo reticularous rash (web like rash ) a few months after sitting in the sun. However, I have had tons of different labs-anti smith, sed, ana, etc ---all clear. I have not had these since my pancreas issues.

I am hoping all of this is not due to pancreatic cancer or something like that, and would think all these odd things have to be connected.

Does this "sound" like lupus? Does lupus always show in the blood? Confused-scared, thanks for opinions

09-15-2009, 04:51 PM
I am new to this site. Not so new to Lupus. I have been diagnosed for 14 years. Your symptoms could be Lupus. No not all your attacks (as I call them) will show up on a blood test. My ANAis not always up, and I still have attacks. I would go to a Lupus specialist, a rheumatologist who knows more than most about Lupus. Rule it out before you get scared it is cancer. Don't stop the tests, incase it is something else. I also get all the symptoms you have mentioned. Just wanted to share. Take care.

09-15-2009, 05:16 PM
I have most of what you described..the 'vibration the legs is terrible for me right now..you hit the nail on the head with the description!!(thanks for that) As for the pancreas I believe it can be a symptom(adjoining problem) with Lupus. My daughter who is 22 who has several symptoms of Lupus also, had an acute pancreatic attack 2 years ago..unexplained to this day. Doctors were stumped and gave her alcohol counseling!!She is not an alcoholic. My dad too passed away from pancreatic cancer and I have a handicapped niece with chronic pancreatitis, so I know how that fear lingers above us. Hang in there, but do question the MD about the possible link with Lupus.

09-15-2009, 06:54 PM
Thank you for your msgs, yes, I am scared as heck that its pancan, but also have to hope if it WERE it would have shown in one of my scans (though I know it can often be missed) I have to also think these odd nerve, muscle things are all connected to my pancrea inflammation.

Do the pains you have with lupus feel like quick electrical pains? I call them "zingers" that bounce from place to place but mainly random fingers, toes , ankles. Also do you get the muscle twitching?

I have had various labs for lupus when my pains (prior to the pancreas issue) started but nothing showed

09-15-2009, 09:46 PM
I have those "electrical" Pains as you call them all the time. Most of the things you have listed besides the lumps on your head I have gone through. And the redness between your lips and your nose I have continuously! It drives me nuts, and is hard to cover-up, even with foundation. I had some kind of terrible infection on my top lip once too that even the infectious disease docs couldn't figure out while I was in the Hospital a week. It can be hard to get a Lupus diagnosis. See more than 1 rheumatologist to be sure, but don't blow off the Cancer thing because of the History in your Family and the fact that it is inflamed, although that is common in Lupus also.

09-16-2009, 06:33 AM
i get those bumps on my head....the size is similar to a "pencil eraser", but they don't hurt or itch, but they are tender....i compare them to "lie bumps" that we get inside of our mouths....they are like a small raised piece of skin....no explanation.you do a great job of explaining your symptoms....make a copy of these and take with you to the dr.....i hope you have a good rheumy.....he/she can make the difference in diagnosis and treatment.My skin (especially on my face, hands, and feet) has become discolored....i have a mixture of brown areas and pink/red areas. I think this is common with lupus.

09-16-2009, 01:31 PM
Thanks so much. I am definitely not blowing off the pancreas thing. In Feb I had a CT followed by an EUS, then in May an MRI-all clear. However, I know this is a very hard disease to detect due to the location.

I dont think the pancreas would cause nerve stinging pains, twitching, joint cracking etc, (but who knows), so I would think it all ties into something else, at least I hope.

My EUS is on Tuesday and I am terrfied they will find something sinister, if not, then I will procede back to my rheum for more tests. All my lupus labs have been totally clear so not sure what to think about it all