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!

Ok… what has wordpress done to my blog?  I go away for a few days and come back to find my entire right column slid to the bottom of the site.  I don’t handle kinks well!  I’m already fed up with trying to type a post and the cursor being five words behind the typing.

It has been a rather busy few days here at home and I haven’t had the time, or energy, to do any posting.  I’ve started another little project (community ezine) so what little free time (and ability) I have has been devoted to that.  I’ve finally mastered CSS and I’m loving the chance to play with it some.  Well, okay… I haven’t mastered it, but it doesn’t have me on the ropes anymore. 

In other news, Friday, I was the family hero!  I think I am the last person I know to not own a cell phone and I’ve refused to even let the hubby get one.  Mainly because the last one he had was a nextel and that little jewel was costing him close to $100 a month!  The ones in our price range didn’t have a large enough signal area to do us any good, so why bother?  Fortunately, Verizon heard their woes and made an offer we couldn’t refuse… three free phones, one main line and only $10 for each additional, no activation fee, and no shipping.  I placed my order Friday and you would think it was Christmas around this place!  My daughter is the only one who has a cell phone now, but she doesn’t get a signal outside of city limits and her display screen keeps cutting out.  Not to mention, the new phones are picture phones and just way cooler than what she has now.  She had roped her grandmother into paying for it, so she couldn’t complain, right?  When they heard they wouldn’t be delivered until Monday, there was some major disappointment.  Then I got the email giving me the FedEx tracking info and the minute they rolled into town, this place was coming unglued!  Unfortunately, it didn’t arrive until early Sat morning and it wasn’t shipped for weekend delivery.  So like they said… MONDAY, people! 

Today, Mom tried to talk me into taking a 5-hour trip with her and my sister to the coast for a court thing over my sister’s child support.  We would leave about lunch time Monday (damn, that’s today!  writing this late/early gets me so confused), arrive by dinner time, explore some sites, then get up early the next morning for court.  After court, it would be another five hour drive back home.  At first, I was game, but reality set in while I was trying to clean my son’s room.  Just the slightest activity today is making me feel horrible!  I’ve got the random racing-heartbeat thing going on and that just leads to shortness of breath and instant zapping of all muscle energy.  I’ve gone through the chores of the day in little spurts of energy with little periods of rest in between.  I’m so stiff that I can’t sit somewhere for five minutes without locking up so how in the hell am I going to drive for five hours?

Owen and my daughter completely wigged out on me, too, when they heard I may not be here Monday.  “Who’s going to get our phones?” was my daughter’s only response to my news of travel.  Owen said, “I would feel better if you would wait and leave after the phones get here.”  I pointed out that they may need to charge over night or require some time for activation and the next thing I know, he’s offering to take two days off work to “watch the boy” while I’m gone.  I explained that the whole point in my going was to take the boy.  A little over-night vacation of sorts.  Then we got to the heart of the offer!  He wanted to be sure somone was here to get the phones!  He, he.  God God Almighty!  Do they not have a life beyond technology!?  Needless to say, both were thrilled to learn I wouldn’t be going after all.  My mother, on the other hand, is not so happy.  She called earlier to night to see if I had changed my mind and tried the ole “Granny Brogan guilt trip” with “What if something happens to me before we get a chance to take another trip together?”  OH PLEASE WOMAN!  She is in relatively good health so any sudden demise would more likely come via car accident so what was she wanting… company at the pearly gates?  Ha, ha.  My sister is the one needing to go, isn’t she company enough?

I’ve got plenty of other reasons to stay in town, too.  Things I didn’t get done last week are going to need attention right away!  But all the excitement about going has made me think about perhaps planning a long weekend trip somewhere.  Just have to figure out where to fit that in!

TLC TV Listing Description:  A medical student faces the first major challenge of her career when an otherwise healthy patient suddenly crashes after a routine operation, and a major miscommunication could cost a teenage boy his life when a doctor can’t identify his condition.

While recovering from a parathyroid resection, a patient begins trembling and demonstrating sings of post operative confusion, although the time frame for such a reaction had long passed.  While doctors search for an explanation, the patient stops breathing and there are increases in his blood pressure and temperature.  The medical student, already in hot water for suggesting the surgeon nicked the thyroid gland or caused a post operative infection, tries to console the patients hostile wife.  During their conversation, the wife mentioned having to “deal with” her husband’s migraines.  She went on to tell about once giving him one of her pills for migraine and described how it over-excited him and “flipped him out.”  This bit of information gave the medical student an idea and she announces that she believes the patient is being poisoned, leaving the wife feeling like the accused.  That hot water just got hotter!  However, she explained what she had learned from the wife and reminded everyone the patient was taking antidepressants, but was one of very few people who have a reaction when those medications were mixed with a medication given during the thyroid surgery: methylene blue.   The patient was now suffering from what is called serotonin syndrome.

A young patient diagnosed with meningitis doesn’t seem to be responding to treatment.  In fact, he is getting worse.  The teenager is showing signs of increased cranial pressure, but CT scans of the brain are completely normal.  Doctors then decide to do a lumbar puncture (spinal tap) to check CSF pressure and such.  When the needle is inserted, spinal fluid squirts out at the doctor, leaving all who witnessed it in disbelief.  At this point, all doctors had to work with was the unusual finding of elevated eosinophils.  Increased eosinophils most commonly indicates parasite infection, but it was unlikely as the sort of parasite that would cause such symptoms was not found in the area and the patient denied any travel.  Doctors decide to ask a more thorough history and finally, a clue comes to light.  The boy mentioned staying with his father in Texas every summer and doctors suddenly believed that had their answer!  The boy hadn’t mentioned travel to Texas because he didn’t feel it was “vacation” or “travel” as he lived there.  Armed with new information, doctors were able to diagnose the boy with Valley Fever.

I went back for my second visit with the new rheumatologist today.  I actually saw his PA, Erin.  I spent half the night last night and a great part of my morning preparing some notes on eosinophilia I wanted to share with them, hopefully convincing them to revisit the whole issue of that being that cause of all this crap.  Sadly, she didn’t seem the least bit interested in what I had to share, but did listen closely to my history about the eosinophilia. 

I was disappointed to learn that my records still hadn’t been transferred over and that probably explains why Erin seemed to be hearing “eosinophilia” for the first time.  I could have sworn I included it in my patient questionaire, but sometimes there’s nothing that leads me in that direction.  It isn’t really a disease and it really isn’t a symptom.  Some docs call it a blood disorder while others consider it nothing more than an abnormal lab finding.  Anyway, realizing that she had no idea about my history with eosinophilia, I almost decided against even mentioning it.  But what did I have to loose, right? 

I told her that I honestly felt all of my symptoms were somehow related to the eosinophilia.  It and it alone could explain everything from GI stuff to the peripheral neuropathy, but every doctor I had seen felt my count wasn’t high enough to cause any damage to tissue.  I also pointed out that even the most experienced hematologist can’t say at precisely which cell count tissue damage can occur.  What’s more, it isn’t just the count that matters, but the duration as well, if not more so, and I’ve had this going on for a few years now.  Stand to reason, my symptoms are getting more severe and more and more systems are being affected.

I’m just hitting the highlights here, but Erin asked to review my symptoms, then went to speak with the doctor.  She re-appeared and said before they could do anything else, they needed to get a CBC and see what my current count is.  I asked her what, if anything, they could do about the eosinophilia and she was honest and said, “Nothing, really.”  Then I was a tad confused.  If there’s nothing they can do, why test for it?  Maybe they are only doing the CBC in the hope of doing me like they did with the SS-A in which my count with one lab was slightly elevated according to their reference range, but normal with another because their range was different.  But then, the reference range for eosinophils doesn’t vary that greatly.  For the most part, labs agree that normal is 1 to 3% with optimal count as something like 2.5%.  Some labs go as high as 5%.  Regardless, anything over 6% is considered eosinophilia and mine is typically 7% or higher.  I think it is odd how no one but me seems to notice that 6% is twice the normal amount and considering these are toxin-producing fighter cells, having two times the normal number of eosinophils means twice the normal amount of toxins, right?  When my count was at 11%, that’s almost 4 times the normal amount (if my math is correct).

Anyway, we will know in a couple of days what the results are and go from there I guess.  If nothing else, maybe they can help me find a hematologist with experience in this disorder.

Well, no surprise there, huh?  Everyone I’ve ever talked to about disability says you will get denied on your first application, but until you read it right there in black and white, you can’t fully appreciate how idiotic this whole process truly is.  We all know that there are injustices in the world, but never feel compelled to do anything about it until it happens to us and let me tell you, friends and neighbors, I wish I had the energy to do just that!

First of all, here’s the reason they gave for denying me:

“The medical evidence shows that your condition is not severe enough to be considered disabling.  We realize that your condition keeps you from doing any of your past jobs, but it does not keep you from doing less demanding work.  Based on you age, education, and past work experience, you can do other work.  It has been decided therefore, that you are not disabled according to the Social Security Act.”

I think it should be mandatory that these people who deny our claims also include a list of just what sort of jobs they think we can do.  Better yet, set us up an interview with the potential employer who wants to hire someone who can’t show up to work every day, is prone to show up late on the few days a month she can make it, needs to take a nap about mid-day, may or may not be able to actually do the work depending upon her brain’s willingness to function, requires a nice quiet, stress-free, temperature controlled work environment, can prop her feet up for a few minutes, then stand, this stretch out flat in the floor…  I MEAN COME ON PEOPLE!

Ok… enough about that.  We all know that this suggestion to work a less demanding job isn’t realistic.  But then they have to go and add this other part:

“If You Want Help With Your Appeal.  You can have a friend, lawyer, or someone else help you.  There are groups that can help you find a lawyer or give you free legal services if you qualify.  There are also lawyers who do not charge unless you win your appeal.  Your local Social Security office has a list of groups that can help you with your appeal. 

If you get someone to help you, you should let us know.  If you hire someone, we must approve the fee before he or she can collect it.  And if you hire a lawyer, we will withhold up to 25 percent of any past due Social Security benefits to pay toward this fee.”

Now I sort of–kind of–always knew it worked like that, but now that it is happening to me, I finally see how completely unfair it all is.  Think about this people… they are telling me I can hire a lawyer, but if the lawyer proves that the people who denied my claim are wrong, they make ME pay a PENALTY?  Shouldn’t that be the other way around?  If a lawyer proves I am disabled shouldn’t the SSDI people be forced to pay my attorney fees out of their own budget and give me a 25 percent penalty payment for the unnecessary delay?  Baffling!

So anyway, I guess my next step is to hire an attorney and write my local congressman about a bill to penalize SSDI for summarily denying claims that are later proved to be valid.

A lot of you I’ve spoken with here have mentioned having symptoms of IBS or other gastrointestinal problems and I want to share this site with you:  Eosinophilic Disorder Types.  The navigation bar on the left side of the site will help you learn more about the disorders.

I came across this site while researching information about eosinophilia and it really got me thinking.  We know that I have eosinophilia, which is too many eosinophils (one of the five white blood cells) in my peripheral blood, so wouldn’t that increase the chances that I have too many eosinophils in other parts of my body?  Of course I first posed this question to my doctor some time ago and was told one has nothing to do with the other, but I never truly bought that.  Now that I have a new doctor, perhaps we can re-visit the issue.

I wanted to share this with all of you because there is a chance that anyone who has the symptoms discussed on the site actually has one of the conditions and it is worth talking to your doctor about, at least.  And let me remind everyone that, for years, doctors were taught to ignore eosinophils and had I never asked what specific blood cell was elevated, I would have never learned I have eosinophilia.  Doctors are still learning just how damaging these little fighter cells can be, but they’ve gained a lot of understanding about what havoc they cause when they wind up in places they shouldn’t be.