March 4, 2013 at 7:35 pm #410chemilyxParticipant
So, I’m a newbie here. Just thought I’d share a few things with you.
Firstly, it appears that I have EDS. I’ve only been diagnosed with hypermobility syndrome, and most of the doctors I speak to believe that that and EDS are different things and that I can’t possibly have EDS because it’s very “rare”. Pffft! But I have a lot of things that point to it being EDS. I now just have to get doctors to take me seriously. Maybe I’ll show them this:
But I HAVE been diagnosed with POTS/ dysautonomia (and I’ve had all the other typical diagnoses too: CFS/ ME, fibromyalgia, bla bla bla).
Firstly, I wanted to share some of my blood test results with you. They seem to be pretty typical for those with EDS/ chronic illnesses, as far as I can tell. They are as follows:
Vitamin D: very low at 22.7 nmol/ L
Liver Function Test: minor abnormality (I wasn’t given any more information than that)
Serum Globulin: high at 37 g/L
Haematocrit: low at 0.36 L/L
MCHC: high at 350 g/L
What I can glean from this is that a) my inflammatory markers are high (related to MCAD???), and that clearly I have a vitamin absorption problem considering how low my vitamin D is. Not sure what the others mean.
I subsequently had a vitamin D injection, and I also had this blood test repeated a week later to see if the results had normalised, but they hadn’t: my inflammatory markers were still high. I had also had a urine sample taken and there was a trace of blood in it, which again seems to be common in EDSers.
Despite all of this, all my doctor is planning to do is refer me to a chronic fatigue clinic which I’ve been to before and it was useless. Great.
Lastly, in the face of all this frustration I’ve just written a letter to my doctor demanding to be taken seriously because I’m sick of facing disbelief and being treated like a hypochondriac.
I’ve made a YouTube video about it here:March 4, 2013 at 8:20 pm #3526BarbaraParticipant
Loved the video – Spot on Charlotte!! I thought you said it very eloquently and with feeling and I loved the little brain meltdown at the end, the like of which we all get on a regular basis!
The only reason that our condition – whatever it’s called (and I say this because it is a combination of many sub-conditions) is RARE is because doctors don’t know how to recognise it!
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!March 4, 2013 at 8:27 pm #3527
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