Yep… sorry folks. I’ve relocated to another blog: Pushing the Chain.
Guess it is just in my nature to revamp when things change? I know updating blogrolls and book marks are a pain and I’m terribly sorry. I’ve already imported this blog and the other two, FibroDenial and DxUnknown into the the new one and deleted the other two, so I’ll be deleting this one in the next couple of weeks.
Hope to see you over there!
I received a copy of my labs in the mail today and, while I was expecting the eosinophils to be elevated, I was suprised by a couple of other abnormal findings. Granted, they are only slightly out of range, but I would appreciate being told about it. After all, I seem to be the only one truly monitoring this crap anymore.
My total white blood count was back up to 14.4 (normal range: 3.6-11.1). Really, no suprise there cause it has almsot always been elevated to some degree, but they could have mentioned that, right? We even wondered if that was just a normal count for me, but a couple random normal ones shot that theory. And what causes an elevated white count boys and girls? That’s right class… INFLAMMATION! And what do we call it when a person continuously has elevated white counts? Chronic leukocytosis! Which could indicate what? Yes, that’s right… CHRONIC INFLAMMATION! And what cell in the body causes inflammation? Come on… you all know this one! EOSINOPHILS!!!! YAY!!!!!! You have been paying attention. He, he… you can take the teacher out of the classroom….
Remember my suspiciouns about them wanting to do a blood test when they knew they couldn’t do anything about eosinophilia? I suspected they were doing an end run like they did with the SS-b titer… choosing a lab with a higher normal value range so my numbers would fit better. Well, I was right, in part. While most labs in the country consider 5% to be the highest normal, this particular lab’s range was up to 7.8%. Maybe they didn’t get the memo about anything over 6% being eosinophilia and not at all normal? Still, I didn’t fit their normal range either with my 9.1%
Then I saw the “L” flag for monocytes and about lost it! Monocytopenia isn’t good, often indicating leukemia, and considering my last test showed 0% and I was consoled with “it was probably just a fluke,” seeing it again had me quite concerned. I saw the count which was 4.5 and scanned over to the reference range which said 43.3-71.9 and I was in a panic! After scaring myself nearly to death, I was looking at it again and realized I had transposed the lines! The range for monocytes is actually 4.6-12.4!! I had read the range for total granulocytes! STUPID! STUPID! So my monocytes are actually only 0.1% out of range so that means that if they were off before, they are at least headed back in right direction! Also, on my last labs, my lymphocytes were at 0% and now they are back into normal range. Or so I thought.
Confused yet? It gets worse! As I read on, I discovered that this particular lab actually did absolute counts on all my cells for me… something the doctor usually has to request around here. There were the monocytes again, but this time within the reference range. And then we had the lymphocytes… oh wait a mintue… they’re flagged! Low again? NOPE! This time they are elevated! The absolute count was 3.2 and the reference range is 1.1-2.7. So I’ve gone from having none to having to many. Way to go bone marrow! By absolute count, the total granulocytes were increased, as well, at 9.2 with ref. range of 1.9-7.2. Still, this isn’t bad at all really. I mean there’s so many factors to consider and this is just one test in which my numbers are just ever so slightly off, right? Well… there’s more!
Wasn’t it just the other day that I said I wasn’t busting butt on this because my count was still not close to the “danger zone?” Well, the absolute eosinophil count may be the fire lit under my butt! It was up to 1.3!! Actual writing is 1.3X10^3 and if I remember how to properly do scientific notations, that equals 1300. With the diagnostic count for HES being 1500, I’m now only 200 cells away! So since my last test in which my absolute count was less than my relative count, the absolute count has gone higher than the relative count. More importantly, I’ve gone from about 900 cells to 1300 cells which is a significant increase.
Shwewwwww. Complicated huh? Let’s review in simpler terms. According to doctors who use relative counts, my condition has shown improvement and still isn’t close to be being dangerous. According to doctors who use absolute counts, my condition has worsened and I’m very close to the danger zone. I think I’ll be getting busy on finding a hematologist now.
I started reading some of the old articles I have bookmarked on eosinophilia last night and I think there’s one question docs can answer for me that may give me greater peace of mind. My biggest fear with this has been evolution into either hypereosinophilia (HES) or chronic eosinophilic leukemia (CEL). I’ve pretty much ruled out the possibility of the latter with learning the blood cells have clonal properties and surely they would have found that by now if mine did. Also, it almost specifically effects men.
I did a blog search in hope of maybe talking to someone with CEL to find out what onset was like, specifically if it began with mild eosinophilia, and found only one blogger who has been diagnosed with it. And according to him, he’s like one of 25 people in America who has it. I added it to my blog list so I can follow his progress… hope you don’t mind, Ivan.
I also found another doctor who is considered and authority on eosinophils and notes from one of his lectures has given me a few other areas to explore. I’ve always thought my stomach issues were secondary to whatever is going on with me, but it may actually be the heart of the problem. Too many eosinophils in the gastrointestinal tract can cause a lot of the stomach issues as well as inflammation in other parts of the body due to increased eosinophils circulating the blood stream. It seems this is confirmed by biopsy, but after a bone marrow biopsy and spinal tap, I’m not skeered! Especially not if it means finally getting some answers and some treatment.
I’ve sent an email to a hemapathologist in another part of the state and requested information on a doctor who could treat eosinophilia so we will see if I get a response with that. I also plan to write my PCP and ask about maybe seeing a gastrointerologist who could at least do the test for me.
And now the house is alive with excitement so I’m out!
A boy is born with seemingly perfect health, but by 6 months of age he is behind in his developmental milestones and his family has noticed a small lump on his spine. Doctors assure the family that all is well. At 1 year of age, Zachary is still lagging behind developmentally and is seen by a neurologist. However, the doctor felt he was going to catch up by age 3, but since there was a family history of genetic disorder, he ordered some tests.
Zachary’s great-grandmother had a son who was diagnosed with a genetic disorder and died at a very young age. His parents were tested for the disorder prior to having children and assured Zachary’s mother was not a carrier of the genetic defect and that there was no risk to future children. Zachary’s own genetic tested also was negative.
By the age of 2, Zachary was in therapy, but wasn’t progressing with speech as well as he was in other areas. Upon having his hearing tested, it was learned he had conductive hearing loss and was only hearing at 20% of what a normal child should hear. He had surgery to correct the problem with fluid in his ears and saw dramatic improvements in speaking and balance. However, at age 3, his physical appearance began changing and his progress was slowing. Additionally, he had very stiff joints and limited range of motion. At 3 and 1/2 years, his family physician told the family to see a geneticist, despite normal testing.
When the Zachary and his family walked in to meet the new doctor, Dr. Benke asked, “What to you so long to get here?” Immediately, the doctor had his suspicions and after an eye exam was “97% sure” of a diagnosis, but ordered a special lab test to confirm it. Only one lab in the country performs such a test and it took over 5 weeks for the family to get the results. Dr. Benke called Zachary’s mother and informed her that her son does in fact have Hunter Syndrome. When asked about the prognosis, the family was told that Zachary could live anywhere from 7 years to 75 years.
The family history of genetic disorder played a key role in this case. However, Dr. Benke believes the family member thought to have died from a genetic disorder was actually misdiagnosed with Hurler Syndrome when the child actually had Hunter Syndrome. The two disorders are very similar in presentation. The hallmark difference mentioned being only haziness of the cornea. In short, the family had been tested for the wrong disorder.
Shortly after Zachary’s diagnosis, a new treatment for Hunter’s syndrome became available and he has shown some improvement. Although there is no cure, Zachary’s family is determined that their son will live to be 75.
* * * * * * * *
Danielle was 22 years old when her illness stuck. Out of the blue, she began vomiting after eating a meal and it didn’t stop. After the contents of her stomach had emptied, she was vomiting a greenish, foamy substance. She vomited about 20 times in one night and, assuming it was food poisoning, waited to see her regular doctor the next day. She was sent to the emergency room where she was tested for gallstones. When the tests were negative, the hospital sent her home with medications to prevent vomiting. As soon as the meds wore off, she was vomiting again. She went to the emergency room again where she was given the meds through IV and, once again, the vomiting stopped and Danielle was sent home, only to return when the medications wore off. The vicious cycle repeated itself for about three weeks.
Finally, Danielle undewent a colonoscopy, but it was normal. Her primary care physician then recommended a special scan of her gallbladder and discovered her organ was only functioning at 16%, where 35% was the lowest norm. She diagnosed with cholecystitis and scheduled Danielle for gallbladder removal. After surgery, Danielle did improve and after a brief stay in the hospital, returned home. Within a day or so of being home, the vomiting returned.
As Danielle’s pain had moved lower into her right side, doctor’s suspected an inflamed appendix and Danielle underwent and appendectomy. Again, she showed immediate improvement, but within days, the vomiting AGAIN returned. The hospital gave Danielle a pic line to provide nourishment to her now starving body, but when all lab results came back normal, medical thinking was redirected. Now, doctors felt the problem was in Danielle’s head. She was sent for a psychological evaluation and when that was normal, the hospital turned her away, saying there was nothing else they could do.
Now going on 8 weeks of this cycle, Danielle’s family drove to Yale University Hospital for help. There, they met Dr. Pria Jamydar who had another test in mind for Danielle… an ERCP. The test revealed a structural problem in Danielle’s digestive system known as a Sphincter of Oddi Dysfunction. Danielle underwent yet another surgery to correct the problem and finally, after weeks of misery and wishing for death, Danielle had a full recovery.
*Note… I missed the episode name for this one. Please leave me a comment if you have that info.
The rheumatologist’s office called today with the results from my CBC and, as expected… elevated eosinophils. The actual value this time was 9%, which isn’t too terribly bad, but still about three times the normal amount. I can’t remember exactly when I first learned they were elevated, but I know for certain that by June of 2005 they were so this past June was at least two years we know of for sure.
The nurse said my doctor and his PA also felt my symptoms were not caused by the eosinophilia, but rather Fibromyalgia. Hmmm… perhaps if they had taken the time to even look at the information I brought in they may understand why I feel my symptoms are caused by the eosinophils? Did I mention that the PA didn’t even take my notes I wasted so much ink printing off? Really, none of it matters anyway, I guess, because the recommendation was to find a hematologist who treats eosinophilia. I guess they either forgot that I asked for help with that or else didn’t have any better luck than I did.
There are two “nationally acredited” (is that the term?) cancer treatment centers here in my area, one at Baptist Medical Center and one at Forsyth Medical Center, and I’ve seen a hematologist from each. The one at Forsyth told me it was caused by my smoking and the one at Baptist told me it was caused by Fibromyalgia. However, I emailed a doctor who’s address I found on an article about eosinophilia and he said they were both mistaken… smoking has only been an aggrivating factor (not the cause) in patients with asthma (which I don’t have) and Fibromyalia doesn’t cause eosinophilia, but eosinophilia has been known to cause FM-like symptoms. So why not just go to that doc? Well, because he is in the UK! Seems like the UK has a whole different take on a lot of illnesses, huh? FM, CFS, ME-CFS, Eosinophilia… just off the top of my head.
Right now, I’m just not mentally “up for” seeking out another hematologist, but it is certainly on my to-do list. First I will have to figure out how in the heck I’m supposed to go about it. Call everyone I can find in the tri-state area and ask what experience they have with Eosinophilia? I think knowing that my count hasn’t ever been in the “danger zone” makes me less inclined to bust butt on this. While 15% seems to be the “let’s get seriously worried” number, there are people who’s counts are much higher… like 25% or even 45%. Of course, most of those people are usually in the blast crisis phase of eosinophilic leukemia or have a severe fungal or parasite infection.
So back to the trenches I go!
