Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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/ Ehlers-Danlos Syndrome Support Group

EDS and other illnesses

maxnkeith
maxnkeith
Spoke to my GP today, about the report from Rheumatology. I'm about to start treatment for SERONEGATIVE RA on the 6th, but because of other medical issues, my bloods have been sent away for more testing. I already have HYPOTHYROIDISM, ULNA NEUROPATHY, PULMONARY HYPERTENTION, showing signs of RAYNAUDS, and i also have HYPERMOBILITY....... now they suspect EDS. Can anybody see any bells ringing here ????? cause i'm oh so confused !!!!
deleted_user
deleted_user
I just want to start by saying that I'm sorry for everything that you are going through. We all go through so much. It seems like with EDS, it's never just one thing. It's ALWAYS soooo many more things. Anyway, just wanted to say hi and let you know I'm here if you need to vent. ((((((((BIG HUGS))))
deleted_user
deleted_user
It can certainly feel overwhelming!

I think part of it is realizing that things you have ignored or taken for granted actually are 'conditions' that have names - you know, like getting dizzy when standing up (for son = EDS - POTS) or lower back pains, painful thumb and odd random bruises (me = EDS- hypermobility/vascular issues) or sleep apnea and restless leg (my brother and niece = EDS-hypermobility).

I think the hypermobility /EDS comes first, really - and is the main puzzle piece that explains everything else.

Myself, I just happened to discover the EDS part first, the 'overview' so to speak, so it has not been as shocking to see the inter-relationships between all these little physical anomalies.

I have no idea if any of what I just wrote makes any sense! Anyhow, you are in the right place and many of us can relate :)...
deleted_user
deleted_user
Yes, I agree, EDS seems to be the primary condition, that can
cause secondary conditions, such as Chiari, POTS, Reynaulds, sleep apnea, etc.
deleted_user
deleted_user
Yes! its a light bulb when you learn about connective tissue disorder, suddenly so much makes sense.

RE: the seronegative RA. I would go with your gut on that one. Back up and research and remember doctors need to make a clinical diagnosis not depend on a test result since results can be wrong or inconsistent. Anitbody testing can be influenced by many factors. Probably everybody else knew this. I learned that fact a little late and it cost precious treatment time.
deleted_user
deleted_user
I have EDS, Alport's Syndrome (genetic kidney disease. interestingly, it's also a collagen disorder. how did I end up with 2??), Hereditary Fructose Intolerance, and I was just diagnosed with a selective antibody deficiency that actually acts a lot like RA. I have horrible inflammatory arthritis, lots of infections that aren't easily treated with antibiotics, fatigue, and some bone degeneration in my jaw. I start on intravenous immunoglobulin (IVIG) next week. I'm excited, I have at least 4 different infections right now and I can't even function.

It seems like a lot of people with EDS have other disorders. I'm lucky in that I haven't had any vascular complications other than low blood pressure and occasional heart palpitations. I'm sorry you're all going through so much. Life just isn't fair for EDS-ers, is it?