Something Autoimmune

[Khitchin]

Hi, I am a 26-year-old female with a mixed bag of symptoms that have developed over the years. I would be grateful to anyone who could give me insight or suggestions as to what this is.

The first (and the most troublesome) problem has been with hip pain. I have no structural defects, just pain over the hip joint after standing/walking for more than 1-1/2 hours, making work difficult. I've been to all kinds of doctors for this over the past 8 years to no avail and even tried PT - just been told to stretch.

Over the past 6 months or so, I have noticed my skin texture changing. It seems more thick and scars very easily - almost rubbery skin on my face. In the past, I've been sensitive to sunlight in the sense that I sometimes get an itchy rash on my cheeks after prolonged exposure. And last year, I had an unexplained rash that started on my back and eventually spread to my face. I also have had nasal ulcers that are painful and will not go away.

I've had an issue with my heart rate, which has been thoroughly evaluated and determined to be Inappropriate Sinus Tachycardia, which is an autonomic dysfunction in which my heart rate increases disproportionately to my level of activity. I take beta blockers for this.

Not sure if it has anything to do with an autoimmune disorder, but I have had persistently inflamed lymph nodes in my neck and armpits, which have been biopsied and determined benign.

I've been moderately anemic for a few years.

Here are my labs:
6/2010:  I had a false-positive RPR with low titer (negative for syphillis on a follow-up test) and high sed rate of 32 (R: 0-20)
8/2010:
     ANA: Homogenous 1:80 titer
     Sed rate 22 (R: 0-20)
     CRP: 1.8 (R: <0.8)
     Cardiolipin AB IGG: 26 gpl (R: <10 gpl)
     Cardiolipin AB IGM: 50 mpl (R: <10) mpl)
     B2 Glycoprotein IGM: 62 u/ml (R: 0)

11/2010:
     LA not detected
     PTT La screen: 39 (R: <= 40)
     DRVVT Screen: 44 (R: <= 42)
     DRVVT Confirm: positive
     DRVVT 1:1 mix: 39 (<= 42)
     DRVVT Incubated 1:1 mx: 44 (<= 47)
     Complement C3C: 170 (R: 90-180)
     B2 Glycoprotein IGG: 32 (R: 150 (R: < = 20)
     CRP: 1.07 (R: <0.8)
     ANA: 1:40 titer homogenous

4/2011:
     DRVVT PPP: 51 (R: < = 45)
     DRVVT Confirm: Positive, corrected with DRVVT imm 1:2
     Cardiolipin AB IGM: 94 (R: <10)
     Cardiolipin AB IGG: 46.9 (R: <15)
     ANA screen: 32 (R: <10)
     SS DNA antibody: 460 (R: <99)
     DS DNA antibody: 164 (R: <40)

My rheumatologist doesn't seem to mind these levels - just put me on an aspirin for possible Antiphospholipid clots. Even in light of my positive anti-DNA levels, he doesn't care for a follow-up. I don't think I would start steroids, but it would be nice to know what's going on inside of me! Could it be lupus? If it is, could lupus cause my hip pain?

Thanks!!
    

[marie3333]

Hi Lori just read your post about SFN from 2009. I have all your symptoms. you could have described me(
Symtoms: whole body pins/needles and burning from scalp,face throughout entire body to the toes. Began 1 1/2 yrs. ago as tingling in my fingers. Then it progressed and I had muscle cramps and twitches all over. I feel like if you stuck my hand into a Christmas tree, it would light up. I get electrical zaps ALL over. Now I have carpul tunnel syndrome. My skin hurts to be touched most of the time. I also get skin sensations of heat and sweating but I'm not sweating. I can't tell the real temperature. Parts of me are freezing cold and others are very warm. I have to ask my husband if it's chilly, regular or warm in the house. Last year I used to have sweats during the night but now I don't sweat and I don't know why. Very very seldom I may feel some light sweat but usually not. I have internal vibrations going through my body. Sometimes I lose the feeling in some skin areas but it comes back. I've had EMG's-SSEP-and other tests including an MRI with contrast of the brain. They can't figure me out. The gave me neurton and that helps a lot but I get used to it and have to increase my dose. Now I take 400mg.AM, 600mg.afternoon and 400mg.at bedtime. The neurologist says it's not a cure but a bandade. All the doctors are at a loss for a diagnose of this. But yet they won't give me a biopsy.)
I had a skin biopsy thay confirmed SFN. I was checked several times for lymes and thyroid problems. All of mt tests come back "normal". I have this painful condition and after 2 yrs of testing still no cause. How are you today ? Do you still have painful pins & needles? I take lyrica 275mgs, still no help. Im at my witts end, I can not go on like this anymore. what did you do to get better? Thank you.  
.

[Khitchin]

Thanks to everyone for your help - I'm going to see a new rheumatologist on July 16th, and I will ask about all of these things. Many thanks!

[Lori707]

I have Chronic lymes for 25yrs. It had gone into remission twice and came back several years ago very bad. I work with a lymes specialist (LLMD). A couple years ago I tested positive (Lyme Western Blot-not Essay). Then tested negative. My LLMD sent my test to IGENE-X Labs in Californina. Came back positive. I was told that other labs are not that sensitive and most come back reactive or negative when actually they're positive.

Lymes also gave me autoimmune problems, a Positive RA Factor and a positive ANA, Autonomic neuropathies, small fiber neurolpathy and whole body painful parathesia (pins and needles). It also gave me inflammatory arthritis.

My Endocronologist gave me tests.
*Vit D was 8.5 (extremely low) - gave me osteoporosis.
*Thyroid antibodies - High Positive - Was diagnosed with Hashimoto's

Please get checked for Hashimoto's! Your thryoid tests can come out normal while still having Hashimoto's. Your tyroid can be part of your symtoms.  
Check your Vit D level. Very important. Low D can cause all sorts of problems, including being the culprit for autoimmune problems.

Be Well and keep us posted.

[thyroidian]

Hi.
I have just looked through your lab results , from 2010, to 2011.
I live in England , and our lab results can be different, but with what i was reading you look to be positive in anticardiolipin, and antiDNA,,,,

I would definately find yourself a good specialist, in either heamatology, or a good Lupus specialist.

I dont know your past medical history , so it is hard for me to comment,
Have you ever had headaches? ever had a bloodclot anywhere? ever had a miscarriage?
Do you have blotchy skin like corned beef looking?

I saw you have had cardiac issues,, and your having hip problems alongside,

You look like you have tested positive twice on the anticardiolipin antibodies, over a period off over 12 weeks, so i would be pushing for a good second opinion.

I am a sufferer of the Antiphospolipid Syndrome, and myself was fobbed off by doctors who really didnt know what the Antiphospolipid Syndrome involved, and i went on suffering unduly.
Especially with being antiDNA positive also i would seek out the best Lupus/APS specialist, and ask for a second opinion, because Lupus and APS, can go together, and Lupus is the primary and the APS is the secondary.

It sounds like you are only 26 and beginning to suffer. Your rheumy did right by giving you aspirin, but you may need further investigations, to rule out something else which maybe underlying.

Good Luck. If you need anymore help just message me, and i will point you in the right direction.
Nicola

[Eri22]

I just tested positive through Igenex labs for Lyme Disease. I have had the same issues for over 6 years, like you Khitchin. Unfortunately, I have struggled finding an answer for years, and then I developed Hodgkins Lymphoma. I believe my weak immune system was a result of my cancer developing. Had I know all of this info prior to my recent Lyme's diagnosis, I probably would never had to go through what I did. Please do research this, and insist on getting this test. I had to pay out of pocket, but I finally have an answer!

I had a
IGM
IGG through IGENEX...then a PCR serum and whole blood to confirm results.

[Khitchin]

Ewford, I don't disbelieve you, it's just that I have  never heard of that before. I've been tested for lyme before, but I will do research as to your suggestion. Thank you for taking an interest. (I would have replied sooner, but I've had a nasty stomach bug and have not made it to the computer till now!)

[ewford]

Khitchin, if you dont believe me, ask the expert here Dr Nicolson.  If it was not for him, I would be much worse off becuse I went 14+ months being missdiagnosed.  I wish I had read a post like I am writing to you now when I needed help.

[Khitchin]

hmmm interesting thanks

[ewford]

Khitchin, You need to RUN not walk to find an ILADS dr near you to get proper diagnosis.  There is a VERY good chance you have an intracellular chronic bacterial infection from Lyme bacteria Borellia Burgdorfer or a Mycoplasmal infection (Mycoplasma Fermentans Incognitus) .  These cause a number of issues including all of the above and in women I have found suffer Endometriosis or Uterine Cysts or Hysterectomies.  The fasticulations are from the bacteria utilizing the Magnesium.  Make sure you take a daily vitamin w/ Mg.  You probably also have a low VitaminD.  Do NOT supplement the vitamin D.  This bacteria causes a vitamin D dysregulation, not defeciency.

Do NOT trust labcorp or Quest Lymes tests since they miss 90% of the actual positive cases.  those tests look for antibodies your weakend immune system wont produce.  If your doc suggests the Western Blot Lymes through labcorp say NO. It tests for 1 type of Borellia and there are over 200 known.  Google IGENEX labs and Lyme and read as much info as you can.  You will understand what I mean.  

Also, watch the movie "Under our Skin" which is a Lymes documentary.  You can view parts of it on Youtube.  Very informative and worrisome.  I wish you luck!  let me know what happens with your diag, you need treatment as soon as possible.

[Khitchin]

Actually, yes! I have problems with intermittent diarrhea/constipation, with frequent nausea. I have always had menstruation problems - pelvic pain and really irregular cycles (3-4 per year naturally). Because of the risk of clotting with my antiphospholipid antibodies, I've stopped Yaz and started progesterone instead to regulate my periods. Is this related to an autoimmune disorder?

I had a sleep study which showed 127 or so periodic limb movements - which disrupts my sleep, no doubt, but is generally of no consequence except I tend to sleepwalk!

Lately, I've been getting pain in the outer part of my right calf, and the only way I can describe it is like lightning. It starts towards the top of my calf and quickly moves down, and feels like water being sprayed on my leg. This doesn't happen quite often, though I do notice my legs do fall asleep more often.

[ewford]

Any bowell issues, stomach pain, "female issues", joint and muscle pain?  Memory loss, sleep disorders?  ankles hurt?  neuropathy? tingling or feeling like a limb is asleep?