|
Post by kiki on Jun 3, 2009 18:52:59 GMT -5
I have been in an awful funk. What little energy I had-and I do mean little has been drained by an emotional rollercoaster. I just couldnt find the energy to care. But wanted to post some lab results. My drs office called to say I needed to come in for some test results (appt on 9th). As a rule results arent given over phone unless negative for something but I wheedled and cajoled and receptionist caved and hurriedly read some of them. I wrote as much as I could. One was for hairs(fibers) from inside corner of eye---- "Minute focus of loosely aggregated refractile acellular material with rare associated squamous cells". Next was skin----"3 levels show portion of loosely aggregated fragments of elongated greenish-gray refractile material with rare superficial squamous cells and possible keratotic material". She started to talk faster so the following results are just bits of what I could write down. 1) calcified lymph nodes in left & right hilar regions 2) something about basophils(sp?) and budding yeast with pseudohyphae seen. 3) mesenteric(?) fat is sparse. There is questionable appearance of infiltration of the fat in region of the cecum. Prominence of small bowel loops in the pelvis. 4) possible venous angioma (brain). 5) there are rare fibers of birefingent material- (did'nt catch where they are). 6) TSH over range. That's all she would give but will know more next week. I have no idea what any of this means and just dont have it in me to even look it up. I'm disgusted with myself for being so pathetic. I NEVER would have believed I would be this way.
|
|
|
Post by liatris on Jun 3, 2009 19:03:56 GMT -5
Kiki - sorry to hear all that - of course, it sort of makes it harder not knowing what it all means. Try to find out asap so that you do not have to worry more than necessary.
Try to do as much as you can in the meantime to relax - I know that is hard - but try.
hang in there.
|
|
|
Post by imblownaway on Jun 4, 2009 9:57:32 GMT -5
Kiki Is this a mainstreams doctor On my followup apt. from a biopsy I got told to buy lotion for dry skin. I know this is all so scary and draining. So be good to yourself. It sounds like you have a doctor and lab that actually did their job. wow keep us posted. I looked up one word Definition of Squamous cells Squamous cells: Flat cells that look like fish scales. The word "squamous" came from the Latin squama meaning "the scale of a fish or serpent." We have a lot of squamous cells. They make up most of the cells in the outer layer of the skin (the epidermis), the passages of the respiratory and digestive tracts, and the linings of the hollow organs of the body. We are more fish-like (or serpent-like) than we may think.
|
|
|
Post by violet on Jun 4, 2009 10:35:29 GMT -5
I have been in an awful funk. What little energy I had-and I do mean little has been drained by an emotional rollercoaster. I just couldnt find the energy to care. But wanted to post some lab results. My drs office called to say I needed to come in for some test results (appt on 9th). As a rule results arent given over phone unless negative for something but I wheedled and cajoled and receptionist caved and hurriedly read some of them. I wrote as much as I could. One was for hairs(fibers) from inside corner of eye---- "Minute focus of loosely aggregated refractile acellular material with rare associated squamous cells". Next was skin----"3 levels show portion of loosely aggregated fragments of elongated greenish-gray refractile material with rare superficial squamous cells and possible keratotic material". She started to talk faster so the following results are just bits of what I could write down. 1) calcified lymph nodes in left & right hilar regions 2) something about basophils(sp?) and budding yeast with pseudohyphae seen. 3) mesenteric(?) fat is sparse. There is questionable appearance of infiltration of the fat in region of the cecum. Prominence of small bowel loops in the pelvis. 4) possible venous angioma (brain). 5) there are rare fibers of birefingent material- (did'nt catch where they are). 6) TSH over range. That's all she would give but will know more next week. I have no idea what any of this means and just dont have it in me to even look it up. I'm disgusted with myself for being so pathetic. I NEVER would have believed I would be this way. I don't know about the rest of you, but I am feeling this is majorly, majorly important information for us. I hope it is okay that I copied this and forwarded it to Cindy Casey, whom I am hoping gets it to Dr. Randy Wymore as soon as possible. I've also copied my internist on it and am hoping to find out if I can get similar testing. Kiki, it would help us immensely if you could let us know what sort of doctor/lab did this workup for you. You are very fortunate, and we are very fortunate that you took the time to post it for us. Thank you.
|
|
|
Post by toni on Jun 4, 2009 11:45:18 GMT -5
Violet I sure agree.
Any info that's come from a doctor who's run tests is helpful.
I looked up that word (birefingent) which there's not really a defined defination, but it has to do with "refraction"...and I'm "assuming" it's the like the same polarized refracting material we've seen, (the white particles) many of us have posted pictures of, which are actually hard to determine what they are because all we can see under the scope IS the light from the scope refracting back off of them.
I wish we knew what those were instead of just what they're doing, as in "birefingent" material.
That's like saying "they found light refracting material"...but it doesn't tell us "what it is".
Not that I'm not glad to hear what all your doc had to say Kiki, I'm VERY glad, and appreciative you've shared this info.
Take care, and if you will, keep us informed if you learn anything more.
Thank you.
|
|
|
Post by imblownaway on Jun 4, 2009 12:37:51 GMT -5
TSH- thyroid-stimulating hormone
A high TSH result often means an underactive thyroid gland that is not responding adequately to the stimulation of TSH due to some type of acute or chronic thyroid dysfunction.
I agree with you ladies we need a translator for this. Plain ol english would be nice. Don't get scared Kiki. The language they use can make it sound scarier than it is. (so far I have learned that you have skin.) ;D Ill leave this to the medical people. Thank you for being so open with us.
|
|
|
Post by kiki on Jun 4, 2009 13:36:52 GMT -5
My primary dr is an internist. She is relentless in her determination to beat this and over the years she came to trust my judgement by only passing on credible articles and theories. Many times after reading something I gave her she will mull it over and follow up with tests. She sent me to an equally open-minded neurosurgeon (he stunned me into stupid when HE SAID to me " this sounds like it could be MORGELLONS!! Can you believe that?? It took days for it to sink in. Anyway, they swapped thoughts and between the two of them ordered close to 40 tests--blood, cat scan, etc. Oh and another MRI-the spectroscopic(?) kind. Some of these were ordered by neuro but results are sent to both. She has final say-so ;D She has earned it. She will give me copies of results if I asked so I'll know which labs on the 9th. I do know that she personally removed the hairs (fibers) from my eye (its mentally better for me to think of them as hair) and the skin biopsy and said "I'm gonna send this to someone I know". But I know she will share anything with someone credible. Her brilliance is her view of "thinking outside the box". She said before you can THINK outside the box, you need to LOOK outside the box. And we all have different views. It would thrill me if any of my results could be a help.
|
|
|
Post by mfromcanada on Jun 4, 2009 14:20:46 GMT -5
toni, violet, I agree that what Kiki's doctors have found in her test results is important. Mycotoxycosis?
|
|
|
Post by violet on Jun 4, 2009 15:15:29 GMT -5
Pap smears will come back with rare squamous cells in the Ob/gyn office I worked and it was nothing according to the pathology labe and MD's. en.wikipedia.org/wiki/BasophilBasophils appear in many specific kinds of inflammatory reactions, particularly those that cause allergic symptoms. Basophils contain anticoagulant heparin, which prevents blood from clotting too quickly. They also contain the vasodilator histamine, which promotes blood flow to tissues. They can be found in unusually high numbers at sites of exoparasite infection, e.g., ticks. They also appear in tissues where allergic reactions are occurring and probably contribute to the severity of these reactions. Basophils have protein receptors on their cell surface that bind IgE antibody very tightly. It is the bound IgE antibody that confers a selective response of these cells to environmental substances, for example, pollen proteins. Recent studies in mice suggest that basophils may also regulate the behavior of T cells and mediate the magnitude of the secondary immune response. I didn't bother to look up the one Toni looked up, but I tend to agree with her. Violet, I hope Dr. Wymore can make a better explaination out of it. Good idea to send it to him. Always great to get input from you who are trained in the health field. The thing that caught my eye about the squamous cells was that they were referred to as "rare associated squamous cells." What does that mean, Karen? Does rare in that case mean "occasional" or "unusual?" What does "associated" mean? The thing about the refractory material that caught my eye is that it is from something acellular. Also, could "keratotic" relate to virus involvement (if I'm correct in assuming keratotic has to do with warts)? And here's another question from me, as a non-health trained morgie: Does "prominence of small bowel loops in the pelvis" suggest that there could be tapeworm involvement? Or is that too far of a reach? :-) Sorry, Kiki. I don't mean to alarm you...
|
|
|
Post by violet on Jun 4, 2009 15:31:13 GMT -5
My primary dr is an internist. She is relentless in her determination to beat this and over the years she came to trust my judgement by only passing on credible articles and theories. Many times after reading something I gave her she will mull it over and follow up with tests. She sent me to an equally open-minded neurosurgeon (he stunned me into stupid when HE SAID to me " this sounds like it could be MORGELLONS!! Can you believe that?? It took days for it to sink in. Anyway, they swapped thoughts and between the two of them ordered close to 40 tests--blood, cat scan, etc. Oh and another MRI-the spectroscopic(?) kind. Some of these were ordered by neuro but results are sent to both. She has final say-so ;D She has earned it. She will give me copies of results if I asked so I'll know which labs on the 9th. I do know that she personally removed the hairs (fibers) from my eye (its mentally better for me to think of them as hair) and the skin biopsy and said "I'm gonna send this to someone I know". But I know she will share anything with someone credible. Her brilliance is her view of "thinking outside the box". She said before you can THINK outside the box, you need to LOOK outside the box. And we all have different views. It would thrill me if any of my results could be a help. Kiki, may I ask where you live and/or which hospital you went to for your neurosurgeon? I work at Johns Hopkins, and I guess I'm just hoping it might be here...just on the off chance...
|
|
|
Post by kiki on Jun 5, 2009 15:25:41 GMT -5
Ummm, how to say this tactfully. With all due respect Violet, my dr doesnt think too highly of Johns Hopkins Infectious disease dept. She referred me to the head dr (last name started with a Z). He never even pretended to examine me. He said all of my symptoms were common and I was just hyperfocused on them. I asked But what about my dr seeing these weird things and he said I'll tell your dr exactly what I think of that. WOOWHEE was she pssd! She got the final jab though cause just one day before I saw him she had run some tests and I was positive with histoplasmosis AND babesia! So there I was with two infectious diseases in front of an "expert" who "knew it all". Sorry but it still makes me spit nails. To be fair, there was a young dr with him that did try to examine me but was stopped. My husband got the impression that the younger dr was not writing it off but wasnt confident enough to speak up b/c my husband saw him at a vending machine and approached him and said I understand that my opinion of my wifes sanity is biased but she has family and friends that love her and more than a few are medical professionals. So know this. If this was her imagination she would have been taken to a dr skilled in mental issues. Her delusion was her belief that Johns Hopkins would certainly be her knight in shining armor. Because she so naively respected this institution, she was positive you would figure it out. The dr said that Dr Z---? was retiring and why not come back then but I cant respect a dr that wont defend his professional opinion. If he believed me he should have been ethical and at least look.
|
|
|
Post by violet on Jun 5, 2009 15:41:38 GMT -5
Ummm, how to say this tactfully. With all due respect Violet, my dr doesnt think too highly of Johns Hopkins Infectious disease dept. She referred me to the head dr (last name started with a Z). He never even pretended to examine me. He said all of my symptoms were common and I was just hyperfocused on them. I asked But what about my dr seeing these weird things and he said I'll tell your dr exactly what I think of that. WOOWHEE was she pssd! She got the final jab though cause just one day before I saw him she had run some tests and I was positive with histoplasmosis AND babesia! So there I was with two infectious diseases in front of an "expert" who "knew it all". Sorry but it still makes me spit nails. To be fair, there was a young dr with him that did try to examine me but was stopped. My husband got the impression that the younger dr was not writing it off but wasnt confident enough to speak up b/c my husband saw him at a vending machine and approached him and said I understand that my opinion of my wifes sanity is biased but she has family and friends that love her and more than a few are medical professionals. So know this. If this was her imagination she would have been taken to a dr skilled in mental issues. Her delusion was her belief that Johns Hopkins would certainly be her knight in shining armor. Because she so naively respected this institution, she was positive you would figure it out. The dr said that Dr Z---? was retiring and why not come back then but I cant respect a dr that wont defend his professional opinion. If he believed me he should have been ethical and at least look. This is an example of why I'm trying to find doctors on the outside. I'm so sorry you've had such an awful experience. Your husband spoke very well for you. Hopkins is a wonderful, wonderful place to get help with known diseases. I don't want to knock it re: that, but I do have to say that Hopkins' docs and so many docs outside of Hopkins have the attitude of which you describe above. So, on your husband's encouragement, do you still plan to see the doctor in Pokomoke City?
|
|
|
Post by kiki on Jun 5, 2009 17:39:20 GMT -5
My uncle was a research scientist (my moms uncle actually but called him uncle). He worked all over the world as a visiting scientist for NIH and CDC and spent many years in Johns Hopkins labs and had WONDERFUL things to say about them. Which is why I was devastated by their behavior. I never mentioned my uncle b/c it seemed sorta crass--like I expect special treatment cause my uncle blah blah blah. But I wish I could tell Dr Z that he didnt deserve my uncles professional respect. Do you know what Dr Zs name is? I would recognize it right away. Since you work right there, you may want to find out who that young dr was that Dr Z was training. Maybe you could casually ask around? I would recognize his name also. He can be forgiven his lapse if he learned from it and has some confidence under his belt...and he can be respected if he actually tries to help ;D
|
|
|
Post by imblownaway on Jun 6, 2009 0:07:35 GMT -5
|
|
|
Post by kiki on Jun 6, 2009 15:03:09 GMT -5
It sure did help! I realized that I went to Johns Hopkins Bayview location and when his photo popped up you'd have thought I saw the devil. Seriously, I got bad butterflies in my tummy. So it looks like he's still there I didnt recognize any other names so dont know if the intern is still there. I have an update about eye specimen as well as more results but will post new thread for test results.
|
|