Just an update :)

[lilmissmedic]

Hello guys :)

  So far, no change in my symptoms, except the hungover feeling is worse on some days than others. I have my C-spine MRI tomorrow, I'm hoping that will help us out with some answers.. Wouldn't that be great if it was just a little spinal cord compression due to some stenosis in the c-spine??

I got some lab results back today and I'm not really sure what to make of them, again, it's one of those things that could mean a lot of different things :/

Path CBC:  reactiv-appearing WBC's, otherwise normal appearing smear. Clinical correlation is advised.  The doc ordered this test because she said she was concerned that my WBC's had been consistently elevated for an extended period of time and was wondering why no one caught it.

ANA screen: Positive
Interpretaions: If ana is positive, but negative for all listed antibodies, then it is positive for one of 118 non-specific autoimmune anitbodies

I think this are a cardiac panel
CK- 122
CK-MB- 2.2
relative index- 1.8

These values are listed after the ANA screen:
DNA DS AB- 4
HISTONE AB- 12
ANTI-SMITH- 7
SSA AB- 246
ANTI-RNP- 21
SSB AB- 10
CENTROMERE AB- 21
JO-1 ENA- 26
SCL-70 ENA- 126

They didn't include any reference ranges for the above results, so I am just waiting now to go back to the doctor next week to go over everything.
I'm thinking the SSA AB is whats abnormal and maybe the SCL-70 ENA slightly as I think anything greater than 120 IU/ML is considered positive, but i'm not definate.

I also found out this weekend that my paternal grandmother was diagnosed with lupus several years ago and is bed ridden at this point with severe pain and paralysis. I don't have a close relationship with my biological father, but I finally broke down and called him to see if I missed somthing in the family history..

I have researched lupus, but I don't have any of the dermatological issues that are usually present. no rash, no photosensitivity, definite heat intolerance but thats all. I will do the c-spine tommorrow, and I am seeing the eye doc next week to look into the visual disturbances I've had.  I am hoping that the new doc that ordered these tests will have some good news for me. She is in internal medicine, but the doctor that is over seeing her residency is a rheumotologist, so at least I will have a few more bases covered.

Any input on my labs would be greatly appreciated. I am getting really rundown, I have stopped taking my neurontin because it makes me soo much slower and scatter brained than I am already, It has even hurt my ability to have normal conversations. I think I am going to go back on and only take it bedtime though, because the pain is getting unbearable again.

I go home to Florida next weekend and I'm soo excited!! I can't wait to see my family, my home and grass and trees again!! lol, Any suggestions on somthing I can take to help with the neuralgia that wont keep me on the couch the whole time?

Thanks for all your help guys!! :)

[Sidesteps]

Hiya!

My mom tested positive for ANA as well as my sister. I am ANA negative and Sed Rate is low.

My mom being ANA positive did not have all the "titers' to actually have Lupus but she had a large amount of the titers so they are just watching her to see what happenes.

They told her she does have some sort of auto-immune disease but it may take extensive testing to figure it out - she may need to even go back East to get this testing. (She won't do that.)

You do not have to have the rash or other symptoms you mentioned to have Lupus. There are two different types. The kind that will have the rash and the systematic version that can attack your organs. (Your skin being an organ.) Like MS, you can flare up and it hit your skin once then attack your liver the next time. You can also have some Neurological symptoms with Lupus as well.

The two tests you mentioned above being abornmal are for Sjorgens disease and Scleroderma. It is not uncommon for people to have more than one auto-immune disease.

[anon07072023]

I'm not sure on the labs either. I hope your MRI will go well and maybe you can get some answers from it.  

Have a good trip to Florida.

-Kelly

[keys_girl]

Hi,
Sorry I can't help with your lab results, just wanted to let you know that I'm going thru very similar circumstances. I also just had a baby in early May, and then in July started getting all these crazy symptoms.

Started off as tingling in my foot and within a few weeks I had tingling & buzzing in both legs, hands, and my face, bladder frequency problems, numb fingertips, random nerve pain all over my body, fuzzy eyesight in the evenings, and muscle cramps in my legs, feet, arms, and hands. All of these symptoms have not let up for even a day in the last three months.

I've had MRI's, nerve conduction tests, seen an ophthalmologist, urologist, and MS specialist but so far tests have come back normal. I just had my blood work taken today including the ANA screen and should have the results back next week. I haven't had the lumbar puncture and was hoping that I could find answers without having to go thru that...after two very painful epidurals in my life, I thought I was done having needles in my spine.

Enjoy your trip to Florida (that's where I live) and I hope we can both find some answers soon!

[sllowe]

Hey there,

So, hungover, but not drunk huh? I'm kidding, but do know how serious this is to you promise.

I cannot interp the blood results, but we do have a few who use to be in the profession in the past that may see this and offer their thoughts in addition to the link Lu provided.

There may be a spinal tap in your future, Miss. That's just my opinion based on some of the things you have experienced thus far.

Yes Ma'am! Would totally be great if this was all just some cord compression! But, your labs are telling some of a tale here too. Never hurts to hope. I look forward to your continued progress and interpts of the possibilities.

Definitely here for you for the duration. Whatever you try for the neuralgia give yourself time to get use to it - most times it only knocks you out for the 1st few weeks.
-shell

[Lulu54]

Hi! The best place I know on line to understand these labs and the numbers is at

labtestsonline.org

This site is run by professional laboratory scientists and technicians and has great explanations of what each test is and how the numbers you get relate.  Check them out.

Enjoy the time with the family, the sun and the surf. Can you ask your docs for something to help with the neuralgia temporarily?  I hope you are off that couch and enjoying every moment on your leave.

Lulu