Erythromelalgia

  • Jac78
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8 years 4 months ago #11187 by Jac78
Replied by Jac78 on topic Erythromelalgia
Thakyou everyone, Chloe is being readmitted to the CHildrens hospital in Melbourne on Monday for a week to see her gyno, pead, pain specialist, neurologist and who knows who else, more tests are being done, im hoping that this time they can finally figure out a plan to help her. Ive been doing lots of research and have found lots of great info so ill be taking all of it with me to the hospital.

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8 years 4 months ago #11190 by Florrie
Replied by Florrie on topic Erythromelalgia
Good luck Jacqui to you and dear little Chloe. I hope the tests will not be too traumatic for both of you. May you get the help you so desperately need.

All the best.
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8 years 4 months ago #11268 by titan55
Replied by titan55 on topic Erythromelalgia
hope all goes well with your daughter.good luck.

chronic migraines and headaches for over 25 years.
intercystitial cystitis.
chronic facial pain due to allergies
irratable bowel syndrome
chronic upper tummy pain
fibromyalgia
depression
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8 years 4 months ago #11369 by GarfieldRules
Replied by GarfieldRules on topic Erythromelalgia
Jacqui, I hope Chloe get some much needed help and pain relief whilst in hospital. You are both in my thoughts and sending you both lots of hugs. xx

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7 years 10 months ago #16828 by Gigi
Replied by Gigi on topic Erythromelalgia
Hi Jacqui,

I was diagnosed with erythromelalgia today and have spent the evening reading up on it online when I came across your post. I wanted to respond to your post right away as I can't imagine how awful it must be to watch your little girl in pain. I hope that you have found some answers since your original post but I just wanted to pass on the details of the doctor that diagnosed me.

Dr Pete Smith of Allergy Medical in Brisbane diagnosed my erythromelalgia. He also has a clinic in Southport on the Gold Coast. To give you a quick run down of my condition, I had chronically painful and itchy hands and feet for about a year. I spent the year in the care of rheumatologists who could not come to a conclusive diagnosis. They eventually referred me to an immunologist who could not diagnose me and advised I take large doses of antihistamine, instead of the steroids I had been taking to manage the pain. The antihistamines worked and I was cured! I recently had a relapse and went to Allergy Medical for testing while I was symptomatic to see if a trigger could be diagnosed. The allergist I saw there said the Medical Director of the practice, Dr Pete Smith, has an interest in strange immunological problems and advised me to see him. It took about two months to get an appointment but I saw him today and explained my symptoms and he straight away diagnosed erythromelalgia. I've never heard of it before but from what I've read and pictures I've seen tonight on the Internet, I think he's right.

Here is a link to some information on him at the Allergy Medical website :
www.allergymedicalgroup.com.au/about/pete/

Anyway, i hope this may be of some help to you and Chloe. i just wanted to pass on my story to you as Dr Smith is most definitely familiar with erythromelalgia. If you have any questions about my experience, please don't hesitate to get in touch.

All the best,
Gigi
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7 years 10 months ago #16831 by Wendles
Replied by Wendles on topic Erythromelalgia
Dear Jacqui
I am sadden to read that someone so young is suffering so much pain but with also so much confusion and worry attached to it. I hope that with the visit to hospital and the new set of tests they are able to confirm the diagnosis and have a treatment that will help.
My thoughts and wishes are with you both.
Wendles

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