View Full Version : Need guidance -pls help!

03-31-2010, 06:51 PM
Hi guys, cannot remember if I posted about myself here or not! I am hoping you can help. Here is some history

I am a 35 yr old female. The "majority" of my symptoms started 2 yrs back. At times my ankles felt like they were going to snap, or that something was crushing me feet, then I started to get migratory stinging/zapping pains-like I was being electricuted...mainly they would jump around my small joints (toes, fingers,ankle) thenmuscle twitching and extreme joint cracking started. Note-this all started within a 2 month time period when I was undergoing a lot of stress (my dad had just been dx with end stage panreatic cancer)--so drs said "it was depression, stress related etc". My muslce twitching is fascilations...like when you are tired and your eye twitches, but this is ALL over my body. At its worst I was having hundreds per day along with hundreds of joint cracks per day. My joints also get very loose and grind at times. Around this same time I started to get horizontal ridges and dents in all my toe and fingernails, still have them.

Fast forward 6 months from when it all started and my right pointer finger started to go numb on and off, then the pancreas inflammation started...then I started to get livedo reticularous rashes in extreme heat, red hard scalp sores all over my head (these hurt!!!), hair thinning, now my pancreas is inflammed again and I have the splinter hemmoraghes. To top it off I just get odd stabbing pains in random parts of my body--different from the stinging pains I that migrate around my joints, these are deep like set in the organs.

I am a big mess basically. When this all started I had MRIs to rule out MS, lupus labs etc..all were clear. I am going back to my rheum tomorrow to redo labs. What labs should I ask her to run?

This all must be related somehow and I doubt my pancreas is the thing causing all of this. Of course my big worry is my pancreas seeing as my dad died of pancancer, but so far all of my scans do not show inflammation or lesions of any sort(thank God)

I get other random pains too like deep eye pains, tooth pains, lower pelvic pains, knee pains--you name it, it has hurt.

Note-my cousin has behcets...

Does this even sound like lupus?

04-01-2010, 03:35 PM
Hi K,
It sounds like the stress of dealing with your Dad's illness has caused a flare for you. If you read some of the threads here, you'll find that a lot of people are frustrated when all of their labs are "normal", but they are still symptomatic. It can take a while for something to show up in a lab. Hopefully, your rheumy will treat the patient, not just rely on blood work. Some of us have had to change docs to get treated.
Keep reading and learning from the threads and the stickys on this site, and then keep insisting on some kind of treatment from your doc.
As for the tests, my rheumy tested for lots of things and found that I was positive for Lupus, RA (rheumatoid factor), Sjogren's (positive SSA and SSB antibodies), and psoriasis. I had those scalp sores, too. Once I got started on Plaquenil and MTX, the sores have disappeared and I've been improving a bit.
Good luck, and keep us informed.

04-01-2010, 04:08 PM
Hi K2626,

I'm not really sure what tests you should ask for. Maybe an evoked potentials/nerve conduction test to determine if there is neuropathy going on. Have you ever had a Dr.Rheumo/Neuro do a Babinski Reflex test? It's a simple thing where the Dr. runs a finger or pen under your foot a certain way to see if your toes react and move. It's a good way to determine if there are neurological problems.

I have SLE, and I also have MS. Many of your symptoms are very similar to the ones I have that have been determined to be from MS. I have the muscle twitches, electric shock pain, and stinging that migrates to different areas, and there has been pain with pressure in one or both eyes. I also have numbness in my extremities and intolerance to heat. How extensive were the tests for MS? An MRI alone cannot rule MS in or out.

You could also be experiencing neurological problems from Lupus. Lupus can cause symptoms that are very similar to those from MS. If you are indeed having nerve related pain, there is a drug called Neurontin that has worked wonders with the rather severe neuropathy pain I was having. Maybe you could ask your Dr. if it migh help you.

I hope you can find the answers you need ASAP. I understand the kind of pain you are feeling, and it's not fun.


04-01-2010, 06:55 PM
I think Rob is right, He has MS, I have Parkinsons bsides Sle. The electric pains and twitches are familiar. Bit I'm not a dr.
A neurological exam might be a wise idea.


surviving at the moment but trying to be normal

04-01-2010, 07:33 PM
Thank you all so much for your responses. I had a full MRI of my brain and spine when this all started two yrs ago. I too thought I had MS when this first started. Would MS however cause inflammation of organs and odd rashes as well (ie-livedo, scalp sores, etc).

I also had an EMG when this all started and it was clear. I am thinking of going in for another one since it has been two yrs. The odd thing is they all come in waves. I had some symptoms for a couple yrs (ice pick headaches, GERD (may have been my pancreas not working the whole time though)before my dad got sick two yrs ago, but its like his illness kicked it all off and more symptoms just keep coming out of the wood work now.

My rheumy said she doesnt want to put me on any meds as it may make my pancreas worse, but what if it is an AI disease causing the inflammation on and off? Surely all these things must be connected and I do not think pancreas inflammation causes all these other oddities. I am also trying to get pregnent with my husband which brings up a whole other set of questions.

So I had about 20 tubes of blood taken today, I am praying something comes back indictating AI so I can at least have answers!!!

Thank you so much

04-02-2010, 04:39 AM
Thank you all so much for your responses. I had a full MRI of my brain and spine when this all started two yrs ago. I too thought I had MS when this first started. Would MS however cause inflammation of organs and odd rashes as well (ie-livedo, scalp sores, etc).

I have never heard of MS alone causing these problems. It sounds like you have a Dr./rheumo who is will to work with you to find some answers. Just keep at it, and hopefully the answers and relief you need will come along ASAP.