any answers welcomed

[Guest guest]

have any of you been sent to a oncologist or hemotolgist based on a

very high sed rate ( red blood cells grouping too rapidly) My tests

came back and my Nuerolosigsts automatically set me up with this other

specialist..he specialated there are only 2 things it could be ..auto

immune diseas ( and HE TOLD ME I HAVE LUPUS) or cancer...but i was

reading up on this and it states that a high sed rate can also indicate

a that the way your body processes collagen is off kilter! I dont wnat

to be the one that says EVERYTHING is ACM related but it seems like

there are just way too many " links " there ( eds alos affects the way

your body processes collegen but I dont have the " ear mark "

traits...just the weird blood!)...plus it sure beats coming to the

terms with the " you may have leukemia " diagnosis!! Imjust wondering has

anyone else had this happen or do I get to the cheese that stands

alone? lol

[Guest guest]

Hi, this response is with reference to the 'high sed rate' in a blood test, I

just thought I'd post this to the group, as I too am curious as to whether

anyone else has had this problem, particularly 'intermittently'.

I think the problem with many aspects of our condition is that many of the

symptoms can be intermittent. I came to figure that the reason why some tests

came back normal, were not necessarily because there was nothing wrong but

because (due to this system of having to wait for appointments) many times we

are tested when we are not suffering from that particularly symptom on that day.

This further impacts any frustration you are suffering, as you end up being

disbelieved,

after several tests come back normal. I think, for our type of

condition, we need centres where we can be tested on the day.

Anyway, I was so fed up of being sent for tests when I was not symptomatic

(that's for the precious few tests that I COULD get anyone to send me for!) that

on one occasion, when my doctor had referred me for a blood test, I decided to

wait until I was having a 'bad-day'. Sure enough, within a few days I woke up

feeling dreadful and took the test. My doctor wrote to me within a few

days, saying that my results were abnormal (surprise, surprise) and that I

should go back to the hospital for another test. By this time I was having a

'good-day' so the results were nearly back to normal.

In any case it was a waste of time, my doctor couldn't explain why they were

abnormal, she wrote to the heamatologist who coudn't explain it either - I give

up! So I still don't have answers. One specialist said maybe there was nothing

wrong with my blood and just the machine needed calibrating ! (I don't think

so!)

Here are the results (just in case anyone out there can explain it to me!):-

In England our testing and results might be different to yours in USA, so I've

included the 'normal values'

first test 12 days later

ESR (sed rate) 26 17

(normal rate 1-14)

Alkaline Phosphotase 183 92

(normal rate 40-120)

Alanine Transaminase 68 21

(normal rate 0 - 56)

Other results which are normally much lower were also increased on that first

test:

Gamma GT 77 ?

(normal rate 0 - 58)

Also I regularly have the following

C reactive Protein 9 (normal rate 0 - 5)

Does anyone else have these problems ?

Barbara

West Yorkshire, England

Head and neck injury 2002 causing Whiplash (W.A.D.), Mild head injury & Post

Concussion syndrome, Partially Empty Sella, P.O.T.S, Peripheral Vestibular

Dysfunction, Mild Radiculopathy & Small Fibre Neuropathy (leg), episodic

Vertebrobasilar Insufficiency (possible Vertebral Artery Dissection) - with

swallowing problems, throat tightening and intermittent abnormal ECG's !!

Current resultant condition 'Minimal tonsilar herniation, Post traumatic

Craniocervical

Instability and Cranial Settling'

[Guest guest]

Hi All

Sorry those blood-test results figures published earlier have not transferred

correctly, there was supposed to be a tab space in between the two columns of

readings which was not displaying!!

Let me put them another way

first test:-        

ESR (sed rate)             26            (normal rate 1-14)

Alkaline Phosphotase      183      (normal rate 40-120)

Alanine Transaminase     68         (normal rate 0 - 56)

12 days later:-

ESR (sed rate)             17            (normal rate 1-14)

Alkaline Phosphotase    92            (normal rate 40-120)

Alanine Transaminase   21            (normal rate 0 - 56)

Anyone had anything similar ?

Barbara

West Yorkshire, England