Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Introducing myself http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1298815744 Message started by brook2sky on 02/27/11 at 02:09:04

Title: Introducing myself
Post by brook2sky on 02/27/11 at 02:09:04

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.

Title: Re: Introducing myself
Post by Starflower on 02/27/11 at 02:34:55

Hi Brook2sky,

Welcome to the group!

Can I ask why you're applying for disability? Since you've had spots for 20 years I assume you don't have aggressive SM. Are you taking any medications yet?

Congratulations, by the way, on getting a diagnosis!

Heather

Title: Re: Introducing myself
Post by Riverwn on 02/27/11 at 06:34:48

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

Title: Re: Introducing myself
Post by Joan on 02/27/11 at 17:31:18

Hi Brook,

Welcome to the forum! Sorry you have been having so much stress and a flare of symptoms, but glad you're now diagnosed. Also, so sorry about your Mother.

Wondering a few things.... Did you have a positive bone marrow biopsy at Mayo? Did they give you a regimen of antihistamines, mast cell stabilizers, leukotriene inibitor, and possibly anti-inflammatories? Did anyone talk to you at all about dietary changes (low-histamine diet)? These are important in order for you to find out what the best is that you can feel.

Many SM patients do hold jobs and live relatively normal lives if they can get stabilized on meds and are careful about what they eat. I say this to give you hope that you'll be able to feel better at some point. Hope that point is soon! If you have any questions about any of these things, someone(s) will be happy to answer them. Good luck!

Title: Re: Introducing myself
Post by Lisa on 02/28/11 at 02:52:28

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

Title: Re: Introducing myself
Post by nycpots on 02/28/11 at 11:46:05

Hi Hi Brook2sky,

Welcome! I'm looking forward to hearing your responses to other members' questions. I also wanted to let you know that my symptoms severely escalu sated after my mother was diagnosed with terminal cancer and that's what sent me looking for answers as i became so debilitated. I suppose we're unfortunately true testaments to the fact that stress is a huge trigger for all of us.

Do you have any symptoms like flushing, GI issues etc. in addition to the ones you listed? Also, who did you see at the Mayo Clinic? *(Note: i went there and they never even tested me- I didn't have the spots but, rather, have horrendous flushing in addition to GI issues, exhaustion, bone pain etc.)....I am now just starting to see Dr. Castells in Boston.