Discussions By Condition: I cannot get a diagnosis.

Should I see a hematologist, through the ringer

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: cellochick908
  • April 8, 2010
  • 10:57 PM

Anyone who can help, or this all sounds familiar...

I have been experiencing these things for over 18 months, and I have been to enough doctors now, that I am frustrated by fruitless wild goose chases. My reg doc wants to hold off on a hematologist unless we already have a diagnosis or wait for more symptoms to appear (great, huh?) and another respected doc suggested hematologist regardless. With two very small children, I need to get on the right track. Here goes:
-Mild elevated white count, 11 to 15 thousand/ (?) consistently in past 18 mo.
-Elevated C reactive protein, consistently
-Elevated SED (mild) consistently also (all above for whole time)
-Negative cardiac workup, neg CT/MRI with and without contrast brain, gut
-negative RA, ANA for Lupus despite family history (CNA Lupus and RA)
-negative Rheumatology consult, neg for Fibromyalgia trigger points, etc
-'Attacks' of sudden fatigue, like getting food poisoning minus vomiting, with chills, brain fogginess, hard to move or lift arms/legs, knees swell and hard to walk without looking like a robot
-attacks include pain in large muscle groups, small finger and toe joints, intense, again like the toxic effect of food poisoning
-vascular effect in head, pounding and dizziness, unsteadiness during these spells.
-no particular time or place these might happen
-worse symtoms after a warm shower, or if I get too warm in general
-well controlled narcolepsy with sleep apnea
-recently diagnosed (due to inreased symptoms, but recognize has been happening for decades in hindsight) of simple partial seizues, but these symptoms started before any anti-seizure meds
-takes hours to resolve, up to days
-allergies, eczema/psoriasis, asthma (decades)
-despite being overweight (partly from long bedrest pregnancies and repair ankle issues and a ruptured disc past few years) I work a 90-95% walking (running some days!) job full-time, and run after kids and do a lot of housework on off days as well. We try to get out for family walks and play outside, though there are only so many hours in the day.
-I am not depressed, distressed, anxious, hopeless, etc, etc nor have I ever been. just frustrated by docs!
So, long enough. Please, any helpful thoughts or ideas. I need to be more functional to continue losing weight and being momma, not just 'tired momma'.
Thanks

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  • Anyone who can help, or this all sounds familiar... I have been experiencing these things for over 18 months, and I have been to enough doctors now, that I am frustrated by fruitless wild goose chases. My reg doc wants to hold off on a hematologist unless we already have a diagnosis or wait for more symptoms to appear (great, huh?) and another respected doc suggested hematologist regardless. With two very small children, I need to get on the right track. Here goes:-Mild elevated white count, 11 to 15 thousand/ (?) consistently in past 18 mo.-Elevated C reactive protein, consistently-Elevated SED (mild) consistently also (all above for whole time)-Negative cardiac workup, neg CT/MRI with and without contrast brain, gut-negative RA, ANA for Lupus despite family history (CNA Lupus and RA)-negative Rheumatology consult, neg for Fibromyalgia trigger points, etc-'Attacks' of sudden fatigue, like getting food poisoning minus vomiting, with chills, brain fogginess, hard to move or lift arms/legs, knees swell and hard to walk without looking like a robot-attacks include pain in large muscle groups, small finger and toe joints, intense, again like the toxic effect of food poisoning-vascular effect in head, pounding and dizziness, unsteadiness during these spells.-no particular time or place these might happen-worse symtoms after a warm shower, or if I get too warm in general-well controlled narcolepsy with sleep apnea-recently diagnosed (due to inreased symptoms, but recognize has been happening for decades in hindsight) of simple partial seizues, but these symptoms started before any anti-seizure meds-takes hours to resolve, up to days-allergies, eczema/psoriasis, asthma (decades)-despite being overweight (partly from long bedrest pregnancies and repair ankle issues and a ruptured disc past few years) I work a 90-95% walking (running some days!) job full-time, and run after kids and do a lot of housework on off days as well. We try to get out for family walks and play outside, though there are only so many hours in the day.-I am not depressed, distressed, anxious, hopeless, etc, etc nor have I ever been. just frustrated by docs!So, long enough. Please, any helpful thoughts or ideas. I need to be more functional to continue losing weight and being momma, not just 'tired momma'.Thanks ***:rolleyes:New info to add-- recent bouts of bronchitis/sinusitis/ear infections. Two of these recent ones were essentially early pneumonia. (Atelectasis seen on xray) and when I was looking at the definition for atelectasis, I saw that the symptoms match really well to a ton of things for me for late diagnosis adult CF! (I do know I am a CF carrier at the very least) Anyone here got some ideas on this?
    cellochick908 1 Replies Flag this Response
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