Hi everyone,

I just returned from the Mayo Clinic where I was diagnosed with systemic mastocytosis. As of tomorrow, I'm on medical leave as I apply for long-term disability.

Here's a brief summary of what my last six months have been like.

In early August, my mother was diagnosed with cancer (which is now terminal), soon after that I started having symptoms. It started with pins and needles in my feet, which climbed up to my thigh by the next day. I then experienced a bout of hypersensitivity, and finally muscle pain. None of the medical professionals I saw knew what was happening (though one told me it was my "personality."), but they all noticed spots on my arms and legs, which I've had for about 20 years and always thought were sun spots.

Long story short I finally went to see a dermatologist, who recognized these as mast cell spots. When the biopsy he took of my skin came back positive, I asked him to refer me to the Mayo Clinic.

I feel fortunate to have been diagnosed in as little as six months. (I hear so many who spend years trying to figure out what's wrong with no answers.) But I'm also pretty nervous about what my future holds in store for me. I'm the bread winner in our family, and suddenly that's been taken away from us.

I believe that God has a plan in all of this, so I am putting my trust in him. At the same time, I'm seeking answers on what my options are.

Welcome to the group, Brook!
Im sorry youre already in pain...but Im glad it didnt take you years to get diagnosed. We have a thread here about applying for disability, what to expect and how-to do it.. Take a look!
Glad youre with us
Hugs,
Ramona

Hi Brook, welcome to our family!

How wonderful you've gotten a diagnosis finally!  Although you may have only been feeling the effects of your mastocytosis in the last few years, as you know you've had the disease for quite some time.  Nice that you didn't need too much help to live with it, that's really great!!!   Yet, obviously it's bothering you enough to feel that you need disability, and that's not great.  But I can assure you Brook, that we can help you find more understanding and answers for so much depends upon learning what your triggers are and learning to manage your disease so that you can return to having a better quality of life.  As you know, there's no cure for our illness, but that doesn't mean we have to be disabled by it.  So much of that depends upon US and we'll help you learn how to find improvement.

So, make yourself at home and go ahead and ask all the questions you want, we're more than happy to help you learn!

Hugs!

Lisa