Discussions By Condition: I cannot get a diagnosis.

Autoimmune undiag.??? Does this sound familiar to anyone?

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: lilLBcake
  • February 11, 2007
  • 02:54 AM

I am a 37 yo white fem, mother of seven year old son. I have been sick for four years now.

Here are what a recent batterty of lab test showed for me. They were done by an allergist who said he couldn't interpret them....and I should see someone more specialized in autoimmune....like UCSF medical center....but I live in Jacksonville Florida...and he offered no help in coordinating getting me out there. I am so lost. And I am so scared of the medical establishment now as to border on phobic. What i hope is that someone recognizes these lab results...and the odd cluster of symptoms...and maybe even some of this tragiv mismanaged medical history and can send me to a doctor who may have helped them. PLEASE!

Autoimmune assay showed:

Tatanus anibody was good...but pneumococcal was low...low of normal.

Oxidative Burst was done three times and each time showed an inadequate stimulation pattern.

Westergren sed rate was high.

C-reactive protiens:
IGA was mid range
IGG was low REALLY low
IGM was one point above normal range for low
IGE was low at 27...one point below normal range

IGG breakdown
subclass 1 was zero
subclass 2 was really low
subclass 3 was 1 point ablve normal low
subclass 4 same

IGG antibody was less than 3 (I assume that means negative)

Lymphocyte subset panel
CD3 normal low
Absolute CD3 (Tcells) Low...range was 840 - 3060...mine was 851
CD4 low side of normal
Natural killer cells were at 4 (range was 4-25)
Absolute NK cells REALLY LOW - 28 (range was 70-260)
CD19 low range of normal
Absolute lymphocytes...low range of normal

End of report

I have had two hommorhagic episodes....one was just bleeding...the other was bleeding and clotting at the same time. The second one the doctors at the hospital accused me of harming myself somehow.....and had me locked in my room for two weeks for observation. How does someone do something like that to themself?

Blood tests later revealed a Delta Platelet Deficiency. I don't quite understand this but the hematologist who saw me in the hospital but wouldn't see me after I was released said..."Half of the platelets contain the brains they need to clot...and half do not...and when they get confused and I have multiple site injury or trauma...my body can spontaneously clot....as it did in my left arm....and hemmorhage into my right without clotting."

I am currently being treated for Interstitial cystitis and Fowler's syndrome(retention and pain). I take levoxyl for hypothyroidism. I have an interstim implant(retention) and I receive pudendal nerve block injections for the pain.

I always seem to have a litany of colds....coughs....infections from bacteria that would be harmless or in colonizations that are off the chart compared to normal. I have been asked so many times if I am doing this to myself I am starting to question if I do...but I don't. It seems when I start on antibiotics...I can't get off them. The infection takes frever and a day to go away....and always two or three antibioitics. The antibiotics erode the GAG layer of the bladder...compounding the IC issues causing extreme amounts of pain. THen I become nonfunctional....not just moody...but so tired I can't get out of bed. Sleeping 14 or more hours a day and still exhausted. I have lost my marriage....and am about to lose boyfriend...he has had it with the confusion...and he feels helpless and driven away...but when it hurts..and I can't get answers from every place I have been..or flat out turned away by physicians who don't want to look for the answer. I am at my wits end. Please someone...if you know or think you know what this sounds like. Please save my life!


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6 Replies:

  • Have you been checked for Multiple Myeloma?????
    Anonymous 42789 Replies
    • February 11, 2007
    • 07:34 AM
    • 0
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  • It sounds as if you have an immune deficiency your symptoms are identical to mine, can you get a referral to an immunologist they will understand your condition better than a heamotologist (i see both) they can work together to give you the best treatment possibly infusions of immunoglobulins. I have an immunodeficiency and have sub cutaneous Neddle under the skin infusions for two hours once a week or intraveinous once every three weeks, this replaces the immunoglobulins you dont have i also have thrombocytopenia (low platelet count for which i have just been treated very sucessfully with rituximab (counts gone from 1 or 2 to 197, I think your best bet is an immunologist. Diane :)
    Diane Sistern 29 Replies
    • February 11, 2007
    • 11:45 AM
    • 0
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  • You must get vthe doctors to take you seriously i wrote the last post and then thought you ought to know my sister who has the same condition was told by her doctors that it was all in her head until she got encephalitis (brain virus) and was left brain damaged she died 6 years ago aged 39. you could log on to the PIA (primary immunodeficiency assosiation website) they have lots of information and a discussions forum with people all over the world heres the website address www.pia.org.uk Hope you find this useful Diane
    Diane Sistern 29 Replies
    • February 11, 2007
    • 11:55 AM
    • 0
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  • Diane, Thank you thank you thank you. I held out that there was hope out there for me. I believe I struggle under the american medical system and horrible mismanagement. I also think that the doctors in the state of florida are so scared of getting sued for malpractice that when a case presents no easy answers they just put you off providing nothing, hoping you will go away in frustration. That is exactly what I have done. Given up.I will contact The PIA. And I suppose, scary or not, I will just have to find a way to get to UCSF where they can find reasonable answer for me. Now that you receive IVIG. How do you feel? Are you better able to function and do? Any complications from such treatments? Very curious about you. May I email you direct?Thank you so much,Kim
    lilLBcake 2 Replies
    • February 11, 2007
    • 06:51 PM
    • 0
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  • Hi Kim glad to help, you can most certainly email me direct at Diane501@talktalk.net would be great to hear if you are succesful at getting the treatment you need, you will see if you go on PIA website that there are lots of you across the pond with the same problem. I know you have the added complication of health insurance etc and difficulty getting the treatment you need. Diane
    Anonymous 42789 Replies
    • February 17, 2007
    • 00:26 PM
    • 0
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  • Could also be untested/undx'd Lyme Disease and its co infections. Check out www.lyment.org. Hope you find out soon so you can feel better.
    Anonymous 42789 Replies
    • February 18, 2007
    • 01:58 PM
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