Dr c letter part 2

[Buckley123]

Second part of the letter

[Hidden]

All sounds quite positive Jade. I’m thinking he believes that your presentation is more towards Ehlers Danlos Syndrome/ EDS and not autoimmune so far. This isn’t him being dismissive I don’t think- he’s just saying that your main problems are to do with joint hypermobility - which is a hereditary connective tissue disorder rather then a disease. The likeliest problem that goes with EDS is autonomic neuropathy - most often PoTS so he’s sending you for a tilt table test to rule this in or out. All sounds pretty sensible to me xx

[Buckley123 in reply to Hidden]

Thanks twitchy ! Doesn’t account for the brain lesions tho xx

[Hidden in reply to Buckley123]

No??? I think you should ask about this on the EDS HU Jade. I know that migraine and also other stuff such as Sjögren’s can cause lesions on brain as mine has. Also if everyone had their brain examined by MRI who knows what they would find?

I know EDS is far from just hypermobile joints. There are quite a few types and some are potentially fatal eg Vascukar EDS. Basically our connective tissue is innately unstable so any part of our bodies can cause problems. My late mum’s instestine was so stretchy that it actually kinked to form a large knot so she ended up having about 5 feet of her gut removed when in her mid 50s.

My hypermobility has gone completely I acknowledged by all my doctors - I’ve even been wrongly tested for it by the staff grade numpty vascular dr I was going to be discharged by. I’m 56 so some joints have firmed up now with arthritis. But according to a physio last week I’m “very mobile - possibly too mobile”. Despite no diagnosis of EDS or JHS - she has decided to treat me for hypermobility regardless.

My Pilates instructor, my neuro physio and an anatomy tribunes masseur have all agreed that my connective tissue is wayward and has no real boundaries and we suspect this is impacting on my lymphatic system now too.

As EDS can cause cerebral spinal fluid leaks which can cause pressure induced migraine-like headaches - I suspect EDS could well also cause brain lesions. Definitely worth ruling in as a possibility and joining an EDS/JHS community to ask. It could explain a lot for you I feel and Dr C has given you the diagnosis and the clue now. X

[KayHimm in reply to Hidden]

I agree, TT. He is looking at the total picture and not being dismissive. He still points to the unexplained abnormal MRI that will be followed by the neurologist.

Xk

[Buckley123]

Thanks guys!

Just spoke with my neurologist and he’s going to refer me to rheumatologist in the royal free for a second opinion but he did say with my symptoms I would get fobbed off with fibromyalgia

But I’m happy as long as they stick to it xx

[crashdoll in reply to Buckley123]

Are you near the Royal Free? Can recommend an amazing rheum who works at the Royal Free trust but I don’t think at that hosp.

[Buckley123 in reply to crashdoll]

Please do xxx

[Roarah]

EDS can cause all your symptoms. Inaddition to joint issues, sometimes premature heart valve prolapse, aorta aneurysms, vascular changes, and hypotension that are prevalent in EDS patients can lead to brain lesions. White matter changes are also very prevalent in woman with migraine. If it is decided you have EDS and PoTs please ask for an cardio echo to establish a base line.

[Buckley123 in reply to Roarah]

Thanks roarah is it serious then? I thought it’s just joint related ?? Xx

[Roarah in reply to Buckley123]

No it is not terribly serious, I was diagnosed at 12 but they did not ever do an echo for I was young and not as much was known. Most EDS patients live long lives with age mortality matching the general public. Even vascular EDS has come along way in treatments.

Eventually as we age mitral valve prolapse and aorta issues are common and treatable but often this happens prematurely in EDS and it should be followed to ensure timely treatment if it did happen. Had I been followed better for my EDS my atrial septal aneurysm and early prolapse may have been caught earlier. I now see a cariologist every six months to follow the ASA.

[Hidden in reply to Buckley123]

I’d say it depends what you mean by serious? I mean many with autoimmune diseases and even cancer live with a relapse remit scenario whereas EDS is associated with chronic pain - which I think is serious. When you ask is it serious I think crumbling teeth and my late mum nearly dying from a knot that had formed from stretchy guts is pretty serious.

Both these and prolapses, haematomas, cerebral spinal fluid leaks etc can all be serious.

Most forms of EDS are rare and anything rare tends to mean it gets overlooked - which can be serious too.

It certainly isn’t just joints any more than lupus is just skin or Sjögren’s is just dry eyes.

[Lisalou19]

I think this letter is is very positive Jade. He has not dismissed you at all and seems like his willing to stick with you and find route causes.

Off the back of this letter I’d put trust into him. I personally think that you should put all your faith into him. If it’s not autoimmune, his open to other suggestions and willing to see you again. Xxx

[Salzer]

I agree with the other posts Jade. I don't think he has dismissed you, think he's just looking at other directions for you for now. Honestly, take it from someone who has been dismissed or passed on to be someone else's problem so many times in the last 18 months. I think he's on your side, I really do. X