I want to compile a document comparing carrier symptoms, that we can have handy when visiting doctors. It can also sometimes be a relief to hear that others have some of the same issues - a case of "so it's NOT just me!".
Attached (hopefully I've done it right) is a document listing symptoms that I have learnt of from other carriers. If you would like to be involved, in the last column please note if you have experienced the symptom, maybe describing it more if you think necessary.
I'm sure there are symptoms I've missed - if so, add them to the bottom.
Email your document back to me @ colleenwalker@hotmail.co.uk, with confirmation if you want to remain anonymous or if I can put your name (first/whole).
Hopefully we'll be able to get some kind of working document to help us prove to these doctors that it's not all in our heads!
Tags:
Permalink Reply by carlynroy on November 13, 2011 at 8:43am Colleen,
This is a great idea! I will work on it and email back.
thanks,'
Carlyn roy
Permalink Reply by carlynroy on November 13, 2011 at 8:53am Here is my document notice the additions on the bottom.
thanks again
carlynroy
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Lupus
Multiple Myeloma
Myositis
Narcolepsy
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
© 2012 Created by Bensfriends.org