Friday, June 01, 2007

Some optimism...

I had my appointment at the free clinic at 6pm this evening. 4 1/2 hours later, I finally saw the doctor. But, I'm not complaining. I am very grateful for every one of those fine people there who are all volunteer. God bless them.

Best of all, the doctor was a retired pediatric oncologist who actually has had a systemic mastocytosis patient!! Unfortunately, it was a little child and my heart immediately went out to him. I was afraid to ask if he had survived, as the way the doctor spoke of him I got the impression that he may have not. Bless that child. I cannot imagine suffering like this as a child.

I had gone all prepared with info sheets about masto and the diagnosis of masto, plus my medical records from my internist and info about the NIH study (which I haven't heard from yet). While it was helpful, it wasn't even actually necessary as the doc knew all about mastocytosis! He examined my rashes, poked me here and there...I think he was checking my lymph nodes, liver and kidneys, and said that I had all the classic indications of mastocytosis. He has ordered a blood test and is going to try to find a lab qualified to do some of the other tests, like checking the tryptase level. He even mentioned that they may do a bone marrow biopsy.

For free!

God bless the good people at Taylors First Baptist Church who underwrite all these good works. I know I say that for myself and all of the other people at the clinic. Bless their hearts, also. You might think that you would see only the bottom of society at a free clinic, but you would be wrong. 95% of the people there were people just like me. Born and bred middle class, just caught with chronic conditions and found themselves uninsurable, and driven to poverty by the cost of healthcare and the deplorable situation we in the richest nation on earth have come to be in. I don't get political on this blog, but I just want to point out that every Democratic candidate for president has some form of a universal healthcare plan while the Republicans do not.

The doc was also able to give me free prescriptions for most all of my meds. I now am freshly replenished with hydroxyzine, Cymbalta, a proton pump inhibitor, loratadine, doxypin (which he uped to 25 mg), Singulair, and ranitidine. He checked my downward turning nails and I told him about the cramp like spasms I've been having in my liver area and he says that most likely I have an overabundance of mast cells in both my liver and kidneys, especially since I have wheal and flare rashes over the areas of those organs which are an indication of their involvement.

I thought that was interesting since I also have rashes in most of the areas where lymph nodes are in their most abundance, like around my navel, sides of my neck, inner elbows, inner knees, abdomen, etc.

Of course, I've thought of dozens of questions I should have asked since, but that is not unusual considering my brain dead status. Hopefully, with all the new meds, that might improve at least a little. The worse my symptoms are, the worse my brain functions.

Please continue to keep your fingers crossed for me, say a prayer, or keep me in your thoughts. I appreciate all the good wishes and they help tremendously.

I'd like to give a special shout out to Piia in Norway and Tiago in Portugal. I hope things are going well for you both and will continue to do so. Keep me posted and I will continue to keep you both in my thoughts. Let's hear from you, Tiago!

Take care, y'all.


Anonymous said...

hi i just wanted to let you know that you are strong in writing these and i thank you for that. i also have mastocytosis and a lot of your symptoms are so real to me. if you don't mind me asking how old are you? I am a 33 year old male from illinois and just found out in dec. and jan of this year about masto. If you get this i will talk more but will wait to see if this goes through. thanks for your time.

BlueKat said...

Hi Matt!

Thanks for your comment. I try to be strong but I've been weak as a kitten today.

I first started exhibiting symptoms 2 years ago when I was 48. I just turned 50, which is kind of unreal to me.

Please write more. I would love to open up the blog to guest posters who could post as often or as infrequently as they liked. It's difficult for me to keep up with it very regularly these days. Let me know if you might be interested.

I am so tired of being sick. I'm sick of being sick. I try to hold out for those few days scattered here and there when I feel almost normal. Since onset, I've only had about 5 weeks total of feeling pretty well, though I understand from some posters that it is possible to get on an even keel and feel good with proper treatment, so I hope that will someday be my reality.

Take care, Matt, and stay in touch.

Anonymous said...


CPAP Dealer said...

Hi, i just wanted to let you know that I really appreciate the fact that you can take the time to write about your experiences, even despite the pain you must be in. We are all praying for you, and hope you feel better.

viktoria said...

Hello Matt & everyone else.....
My name is Viktoria..I am 41 years old.who resides in Southern Missouri.i have battled with MASTO.....for 3 years....was just diagnosed with it recently..i knew something was wrong in the 3 years but just did not know what it is.....I know abt the ill feeling and no energy and fatigue.......and the aches and pains in the joints....the swollen eyes for 3 years ...and swollen hubbys family thought it was all in my head and nothing was wrong with me....that really effected me emotionally....we moved out of state and i do not try to bring negativeness in my life is not good for the i wish not to associate with people who do not understand or care to understand this illness....but just judge me....i am taking the Gastrocrom which has helped my swelling but not 100% ...I GET HORRIBLE PAIN IN MY JOINTS....i can hardly stand like i am losing use of my arms because they hurt so badly just moving them....i feel lighted headed many times of the i am going to pass out.....i am on 4 tabs...a day 50 mg's hydroxzine.....and the singular...also ranitidine....i hope i will feel better soon just dont know...and i wish everyone else on this board the best of luck....I am glad i found this site....and i am not in this alone....thank you all for being here.....GOD BLESS Viktoria

BlueKat said...

Anonymous... I have heard of some masto patients being treated with interferon. I'm so glad it's working for you.

cpap... thanks so much. I can use all the prayers I can get.

Viktoria...thank you for sharing your story. Please visit often. Have you tried taking Doxepin HCI (Sinequin)? It's a tricyclic anti-depressant with both histamine-1 and histamine-2 blocking effects and is also used to alleviate chronic pain. After I read that it helped some people, my doc put me on 10 mg of it. I noticed in a very short time that I wasn't having the type of joint and bone pain I had been having but I didn't know that it could be the Doxepin until I read an article in
The Mastocytosis Chronicles, the newsletter of The Mastocytosis Society. It was about Dr. Theoharides speech at the University of SC. The above info about Doxepin is from that article. The doc has since raised my dosage to 25 mg. It also helps my frame of mind greatly.

If it doesn't help, you might try Cymbalta. It also really helped my body pain but, for me, it tends to really upset my stomach but it might not have that effect on you.

Good luck, hon, and please stay in touch and let us know how you're doing. You're in our prayers and thoughts.

viktoria said...

well thank you much for the advice.....i will take this into consideration....anyone try taking tramadol...for pain? i have read that this does not effect the mast cells ...y all take care....will check back soon....Viktoria

BlueKat said...


I've taken tramadol for the pain and it does help alot.

Anonymous said...

Hi BlueKat,

I stumbled upon your wonderful blog this morning while trying to find out if my insurance will cover my Gastrocrom.

I was recently diagnosed with Mast Cell Activation Disorder - I supposedly do not have MASTO, but I exhibit what I would call "partial anaphylaxis" at any given time. In a nutshell: It was explained I do not produce an overabundance of mast cells, I have an adequate number of cells, they just fire randomly; basically whenever they feel like it. I get fast heart palps, and used to think I was having a major panic attack but come to find out it was a form of anaphylaxis. I get hives all over and get the feeling like I have to run to the bathroom. Very strange.

Anyhow, the Gastrocrom has helped me tremendously. I had to stop exercising due to reason I'm allergic to core body temp changes and the medicine actually assisted me in exercising again - it was awesome.

I lost my insurance coverage and was just assisted today via the state but have no idea if they will actually cover this med. It has been the only help and salvation I've had in over 3 years.

Thank you for posting your journey. It is so comforting to know we are in this together, albeit not a good scenerio from any angle.

I wish you all the very best and hope your illness is under control and managed to the point where you will regain quality of life.