The Thoughts of SES Blog

The Wait Is Over…I Have a Diagnosis

So after 3 and a half months of waiting, the results came from the immunologist. I have mixed feelings since my particular case has no cure, no real treatment. But I also know what I’m dealing with and my doctors will be able to work with it easier. My primary diagnosis is Mannose-binding lectin protein deficiency, also known as MBL. Not a lot is known about the condition. I only ask that whoever reads this pray for a cure or at least a treatment to be found in my lifetime and that if not that I continue to learn to accept things as they are and face it bravely.


AAAAI – ELEMENTS of Allergy & Asthma

Posted in Thoughts on Health by ses31 on March 9, 2010

AAAAI – ELEMENTS of Allergy & Asthma.

Great overview on immune deficiency.

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Today’s Exciting Package

Posted in Thoughts on Health by ses31 on February 18, 2010

I got my package today! I remembered ordering it, but I wasn’t expecting it today. Well, I didn’t know when to expect it, but boy was it a happy and exciting moment. It was like Christmas in the house because both my mother and I got some things in it. Who-haw! See, I joined IDF Common Ground and IDF Friends for patients with immune deficiencies and through the message boards learned that there were some free resources available, including some wellness notebooks and binders. So, I went on the website to order my kits. I ordered like everything they would send me. I order the kit for myself and for my mother, who is basically a caregiver. I am now ordering some posters for awareness for some places I frequent in order to help them out.

But here is what I got: a backpack thing with an IGIV bear, play therapy kit and IGIV starter kit; a wellness binder with folders and three hole punch to organize all my important doctor and insurance papers; a wellness notebook for the year that helps me with appointments, medications, how I feel that day, pain level, etc. and includes an order form for next year’s kit; a brochure about GammaGard Liquid IGIV; Celina’s Story about a patient with a similar story; The ABCs of Kids Like Me and a pack of crayons; My IVIG Book Kit; IGIV’s Medical Records booklet; a poster with the warning signs of Primary Immune Deficiency; and there was even a second wellness binder with folders and three hole punch and wellness notebook for my mother to use as well!

Well, needless to say, that was ONE heavy box with some SUPER SWEET stuff!

But, I’m really excited to start using my wellness kit this week and to start helping others understand my condition better. But I’m also really excited to learn how to live with it and how to fight it and how things are going to be and how they’ll go these next few weeks and months. Strange as that bear looks, there’s something oddly comforting about him and needless to say, the next time I have labs drawn, he’s going to be right there beside me! I may be 31, but I still need a comfort object too apparently. I already do dance and music for my therapy and books for my therapy and my blogs are my therapy, so now I have another thing to look forward to.

By the way, I want to put in a plug. I am wanting to look into the possibility of seeing about an allergy dog for my really bad peanut allergy through Angel Service Dogs, but in order to even consider this, I would need sponsorship, so please consider praying over this if you are reading this. My peanut allergy has gotten to the point where if I’m in the same room as someone else who is eating something that contains peanuts or peanut butter, it will trigger an asthma attack. I am also asthmatic to wheat and mushrooms. Thanks.

How I Feel Today

Posted in Thoughts on Health by ses31 on January 27, 2010

I woke up feeling like I should be back in the bed. I have been having an off-week this week, with restless nights and insomnia. I came home from church Sunday with a 100 degree fever and it has yet to come down below 99. I usually run a 97-98.

I got on the scale this morning only to find that I have lost 12 pounds total in one week. I am noticing from several other factors that I am starting to become malnourished in terms of my necessary vitamins and minerals.

My neurologist’s office called yesterday. They don’t want to wait until March to see me. They want to see me next week. Probably to discuss the advantages and the disadvantages of my continuing on Topamax therapy for prevention of migraines in light of the kidney stone in December.

The urologist did not have the results of the pathology from that yet as of yesterday. But I will want them forwarded to me so I can make sure my primary care doctor, my endocrinologist, the immunologist, and I guess the neurologist and my mitral valve specialist gets them.

My mitral valve specialist told me when she looked at the results of the bloodwork that got me into the appointment with the immunologist that she would me more alarmed at my IgE level than my flagged IgG subclasses 1 and 3. Although in all honesty, even the IgA and the IgM and the other IgG subclasses 2 and 4 were a little troubling to me.

But she may be right. I have virtually no IgE, yet I have a multitude of allergies that the doctors can’t find on tests despite my clinical history-“Doctors can be stupid sometimes.” You’re right Mr. Bob. When will they learn that if a substance causes the symptoms, and the elimination of the substance eliminates the symptoms, but the reintroduction of the substance brings back the symptoms, it’s a strong possibility that an allergy exists?

But finally after two years, I am hoping to have some answers soon…. In the meantime, today, I feel kind of sick with sneezing, a slight ear ache, a fever, itchy, watery eyes and some mild pains again.