Elevated Inflammatory markers in EDS

Hi,

I'm Gill & I suffer from EDS It never bothered me when I was younger & I quite liked being so 'bendy' and being able to dislocate my joints at will.

However, after a nasty car accident I was left with a replacement cervical spine (BAK Cage C4/5/6), severed L brachial plexus, dislocated L Trans Mandibular Joint (now wired but still "clicking"),

severe L "foot drop" (now splinted) and PAIN+++ To add to my misery I am left handed!

In 2010 I had my L femoral tendons lengthened - which due to the EDS took an age to get over as the scar split three times!

My left leg (the one with foot drop & extended tendons) is now at least twice the size of my right and I have had very elevated inflammatory markers in my bloods for approx. 2 years. These markers are getting higher & higher and on Thursday my consultant said he is "..concerned he is missing something drastic, if not sinister..."

He ordered more bloods and upped my steroid inhalers as my asthma is getting worse as I age. (I'm now 60) I'm now wheelchair dependent as attempting to stand for even a minute is excruciatingly painful.

Any ideas what he "might be missing" ?? I thought it was just secondary to my tendon op, but it seems that is not the cause

It will be months before I get to see him again as the clinics are always full & I'm concerned my spinal problems could be masking something nasty aka a tumor

Anyone else in a wheelchair with EDS & elevated inflammatory markers??

We could start an exclusive club where we can feel sorry for each other LOL!!!

2 Replies

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  • Hi Gill,

    I see your post is from a year ago. I hope you are doing better now.

    You should let your auto immune functions check out at an immunologist when you have so high inflammatory markers something is set of in your body and an AI problem might cause the troubles you have.

    A full MRI or even bettter PET Scan also is useful of nothing is find in AI tests.

    Good luck, take care!

  • Thanks, strangely enough your reply coincided with a Nat Neuro Consultant sending me for doppler studies, blood tests etc, So maybe, someone, somewhere will find out what is happening, after suffering for 21 years!!!!

    I'll let you know

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