Autoimmune Disorders Community
15 plus years and still no real answers....HELP
Font Size:
Blank Blank

15 plus years and still no real answers....HELP

So I've had "something" wrong with me since I was probably 16 (now 36) and still have no real answers.  Sound familiar :-)

In high school I had migraines.  MRI's done to rule out tumors etc.  It was also suggested that I have Chronic Fatigue Syndrome and Depression.

At age 24 diagnosised with Endometriosis - 2 laproscopy surgeries (age 24 & 26) and a round or two of "chemical induced menapause" followed by maintenance treatment with low dose birth control and no major issues since.

Mid twenties started experiencing unexplaned bouts of vertigo,  No doctor ever found a cause.  Longest non-stop episode was 6 weeks!  I couldn't drive, read, etc.  I changed jobs (no longer working in an office at a computer all day) and the severity has diminished.  I have learned when an episode is coming on to immediately go to bed and sleep for as long as I can ant that generally stops the episode.  I am super sensitive to motion now and can no longer enjoy ANY amuesment park rides.  I was in Venice, Italy a year ago and I could actually sense some of buildings moving.  I jokingly say I can get motion sickness just turning around in my closet.  However, I rarely ever vomit as a result.  I now carry meclizine with me at all times.

Sometime in my mid-late 20's I donate blood and my blood was rejected due to a positive syphilis test.  It turned out to be a false positive but definately caused a few fights with me and hubby.  I tried to donate again and resulted in another false positive.  I hate needles so I haven't even attempted again - why bother if they keep rejecting my blood.

Two years ago (age 34) I was diagnosed with Narcolepsy.  It isn't a "true narcolepsy" diagnosis because I didn't hit REM sleep in the specified amount of time.  The Neurologist felt this was due to anti-depressants I was taking and determined not worth the risk to re-do sleep study with SSRI's out of my system.  By the 4th "nap" of the study I fell asleep in less than 1 minute!  He felt those results were conclusive enough.

About a year ago I started having what I thought were ear infections but ENT and GI doctor ruled out ear infections and decided the severe ear pain was due to GERD.  I had and endoscopy and it came back normal.  Still taking meds for GERD and the ear pain still comes and goes.

For the last several years I generally spend 1-2 weeks per month nauseaous too - aren't I lucky?  Again, vomitting is rare.  However, I have been known to dry heave and or gag when presented with certain smells or sights of some foods.  The sensitivity level varies.

The "depression" got so bad that it was affecting my work and my doctor put me on medical leave for awhile and we tried a variety of anti-depressants.  The quotes are because I don't necessarily believe I'm "depressed" but something is wrong.

Since May I've been off work for a total of 2.5 months and I've seen my regular doctor, psychologist, neurologist, psychiatrist, endocrinologist, and acupuncturist and still uncertain what is going on.  Below are some lab results my endocrinologist ordered.  I'd love to hear your opinions/suggestions.

Oh yeah - and endocrinologist said I had "reactive hypoglycemia"

Iron, Total 58 (normal = 40-175)
Iron Binding Capacity 447 (normal = 250-450)
%saturation 13 (normal 15-50)

Cardon Dioxide 20 (normal 21-33) - probably not breathing cause HATE needles :-)

Absolute Eosinophils 0 (normal 15-500)  No idea what this is

FSH 1.4 (range 1.5-17.7 depending on menstrual cycle - per my calculations I should've been at mid-cycle peak = 3.1-17.7 but dr. sd not to go by that since on birth control)

LH 3.5 (range 0.5-76.3 depending on menstrual cycle - per my calculations I should;ve been at mid-cycle peak = 8.7-76.3 but dr. sd not to bo by that since on birth control)

Prolactin 6.6 (normal/non-pregnant 3.0-30.0)

Testosterone 30 (range 2-45)

Vitamin B12 272 (normal 200-1100)
Vitamin D, 25 Hydroxy 25.4 (range 32-100)
Magnesium Serum 2.2 (range 1.6-2.6)

Celica Disease Panel:  Negative
Glucosse Tolerance fasting = 83, 1 hr = 148, 2 hr = 126, 3 hr = 67
C-Peptide 1.7 (range 0.4-2.1)

Antiparietal Cell Antibody 18.4 (range 0.0-20)

Thyroid Stim Immunoglobulin 111 (range 0-139)

ANA Direct - Negative

Insulin-Like Growth Factor 175 (range 109-284)

Antithyroglobulin AB <20 (range 0-40)

17 Alpha Hydroxyprogesterone 31 (ranges not given)
DHEA Sulfate, Serum 92 (ranges not given)
ACTH, Plasma 47.1 (rante 7.2-63.3)

Cortisol 39.7 (range AM 6.2-19.4 PM 2.3-11.9)  I did test at 7am

Based on above results the endocrinologist put me on a weekly Vitamin D capsule and Vitamin B12 nasal spray and will have me re-tested in 2 months.  He ordered a dexamethosone suppression test for the cortisol to be retested.  He said that the "depression" and "stress" of my job (that I hadn't been to in 2 weeks) could cause the increase in cortisol.  I'm a little over a month into the 2 months.

About a month ago I broke out with what an urgent care doctor called hives and gave me prednisone for a week.  I still don't really think they were hives but no one listened.  The last several weeks I have started experiencing random joint pains for no explained reason.  It will last for several days and then disappear.  Started at my knee, next time inner elbow, and most recently my wrist.

Oh yeah, one more thing, I generally have really bad lower back pain that I associate with PMS

I'm sorry to give you so much info but appreciate you taking the time to read and respond.

5 Comments Post a Comment
no one gals are just like my idea ;-  jk

Hoping to regenerate some thoughts there
I am going to reply,
Firstly your endo should check you for Cushings.
It sounds like this is what he has got planned with the dex suppression test.

Secondly, i would strongly advice you to get tested for APS.
You state you had a false positive test for syphllis, well this is seen in Antiphospolipid Syndrome, and this illness also causes, headaches,vertigo, and ear imbalances, along with many other symptoms.

To get tested for APS, you need to have two bloodtests, the first being anticardiolipin (aCL).  and the second Lupus anticoagulant. (LA) Both these tests are need to check for antiphospolid syndrome.

I hope this as helped you, if i can be off anymore help just give us a message.

Good luck

Thank you for your suggestions.  I will look into APS.

Yes - endo was looking for Cushings and the Dex Sup ruled it out.

Neurologist did MRI to rule out demylenation (sign of MS) and did not see evidence.  She has referred me to a Rheumatologist that I see next week.

I posted in expert forum this week too and he suggested to check for chlaymida pn (not the STD like I mistankenly thought) and mycoplasma.  I still need to read up on those as well.

You are welcome.
I have been through, what you are going through now, but i was mis-diagnosed with MS, for 12 years, only to find out last year, i actually have APS, which can mimic MS.

It causes all sorts of neurological problems, along with many multiple problems throughout the body also.

I hope you get tested soon, as they test once, and then if it is positive, they usually wait 12 weeks to test again for diagnosis.

Fingers crossed they sort you out soon.
Ask the Dr for a TTG test for Coeliac it can cause some of the conditions you have particularly the low B12 & Vitamin D
Post a Comment
Weight Tracker
Weight Tracker
Start Tracking Now
Autoimmune Disorders Community Resources
RSS Expert Activity
Marathon Running Done Over Many Yea...
May 21 by John C Hagan III, MD, FACS, FAAOBlank
New Article on Multifocal IOL vs &q...
May 21 by John C Hagan III, MD, FACS, FAAOBlank
TMJ/TMJ The Connection Between Teet...
01/15 by Hamidreza Nassery , DMD, FICOI, FAGD, FICCMOBlank
Top Autoimmune Diseases Answerers
London, ON
Spearsville, LA