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Read conversations, start a discussion, and connect with others about rare diseases.

Doctor just said I have some random virus but am wondering if it is true or not.

So i went to the doctor today and they said I just have some random virus but do not know if it is true. symptoms: Body aches, Fever 101-102.3 it...

seronegative gMG treatment beyond IVIG and/or Apheresis

IVIG was a fail for me (tried more than one product) and am currently receiving Apherisis every 3 weeks via an AV Graft in my arm. Doctors predict this will...

Numbness in fingertips, sensations in feet and head all depends on what I eat.

Started with numbness in finger tips, then to my feet feeling weird in the morning when I got up, now I have constant sensations in my feet, I get sores...

What does advocacy mean to you?

Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are just a few examples. Are you involved or...

How far do you travel for medical care?

In your diagnosis or treatment journey, how far do you have to go to see doctors and specialists you feel can help you? Have you ever moved to access better...

Grad School

Any tips for managing grad school with rare disease? I suffer from neuromuscular disease and it affects basically every part of my body. I will be studying data analysis....

Environmental Allergies Or No

I'm dealing with something very weird. This is the 3rd time in the last 5 years or so. I have seen an Allergist, a ENT doctor, did many tests and...

cerebellar ataxia

Dealing with the many symptoms of ataxia. Has anyone else dealt with this?...

Who has GI issues with CMT?

I have severe constipation and gastroparesis with CMT. Does anyone else suffer GI issues?...

Hope for Cushing’s Disease

I was diagnosed with Cushing’s disease in ‘98. Textbook case with everything effected. Pituitary resection lead to reoccurrence so I had Gamma Knife. I went into remission and ended up...

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