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need some prayers if you dont mind


ASH
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  • 2 weeks later...

Tuesday is test result day been long wait so i will find out one way or  another if im here in this realm for longer or time to go . i will definately post back to my friends to let know whats up good or bad . my youngest daughter is here already for chrismas but came up early to give good luck . they got in at 3 am and surprised  this morning .  but it is all about family .

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update -   just got home , bone marrow fine , nothing to bad , it seems its autoimmune and my body is fighting itself .   thankfully nothing worse. thanks for all the thoughts and prayers . means alot . want to go with predisone   i asked what about lets go without it a steroid as im taking alot of precripts now so  go back for 3 month check up  

Edited by ASH
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38 minutes ago, ASH said:

update -   just got home , bone marrow fine , nothing to bad , it seems its autoimmune and my body is fighting itself .   thankfully nothing worse. thanks for all the thoughts and prayers . means alot . want to go with predisone   i asked what about lets go without it a steroid as im taking alot of precripts now so  go back for 3 month check up  

Ash

Could it be the other meds your taking causing blood count to be off?  My wife had a similar problem and the cancer doctor told her to stop the Nexium for a while and sure enough that was causing the problem.

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7 minutes ago, pipedreams said:

Ash

Could it be the other meds your taking causing blood count to be off?  My wife had a similar problem and the cancer doctor told her to stop the Nexium for a while and sure enough that was causing the problem.

yeah we discussed it and we are gonna do a regime and do some testing 

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Thank the Lord!  

I just had two scares like that.  My girlfriend, they thought it might be leukemia, but came out like yours.  

My daughter, who is under observation because of lumps, was called to come in immediately after some tests.  When she got there, they were a little red faced.  Seems her test and another lady’s got switched.  Hers was okay.  Thankfully, they hadn’t told the other lady her test was clear.  

So I know how you’re feeling right now.  Congrats!!!  

Hawk 

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18 hours ago, ASH said:

yeah we discussed it and we are gonna do a regime and do some testing 

Not to get too personal, but testosterone (injections) can cause a spike in red blood counts.  That is how one oncologist diagnosed polycemia vera, like I needed another rare disease.  But, I am like a honey badger when it comes to ferreting out the truth, so I went to MD Anderson to talk to the head of the Leukemia Department.  He said if you generate too much red blood cells you will stroke, cardiac with a clot and die.  Not what I wanted to hear.  So, I got bone biopsy out of my hip, which should have been a breeze for them, since there is little padding left back there.  It came out clean.  I went from a life expectancy of about 10 years, to a regular life (well as regular as it can be for me).  I am glad you came out clean.  Now, not to be alarmist, but I would see a reputable geneticist,  Because, when the extremities don't work right, it might mean, you have an Hispanic gene, French Canadian gene, or like me a Buhkaran gene.  These three groups develop OPMD.  It affects males more than females when Autosomal.  The max alleles are 17, which I have, because when we got scattered somehow the Buhkaran Jews got it hard and early in life.  Far from being Anti-Semitic, or sexist, women get it less but pass it on to the males who get it in spades.  I wonder if that is because when Hashem scattered us, that the male, who is supposed to be the Spiritual Head of the family bore the brunt of Hashem's displeasure, as he chastens his children like a father.  Essentially, a Spiritual Spanking.  But, Hashem still loves us, as we have a Homeland.  One, I couldn't possibly afford, nor want to live in a "gun free" zone except for the State.  In shekels it is crazy, and in USD almost as bad.

But, seriously, see a MD that specializes in genetics.  I went crazy trying to figure out the disease, a simple blood test told the tale.  From there, I dug through the family history and narrowed it down to the guy that passed it on.  Doctor's guess a lot.  When I first got hit with this, I was sent to a rheumatologist, which wasted my time, his time, as the assumption was the rising CK was autoimmune.  It was not.  I only suggest this, so you don't go down a strange path with no help.  If you notice your eyelids drooping, or you are unable to make facial expressions, it is not autoimmune. 

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