- Joined
- Oct 16, 2012
- Messages
- 5
Hello Everyone,
My name is Maureen and I live in NJ.
Looking back over the many years I realized I have always had problems with my bowels. As a child I can still see myself lying on the kitchen table as a neighbor (who was a nurse) was giving me an enema. I wouldn't know what it is like to be "normal" that way.
Fast forward x amount of years and I have a diagnosis of IBS.
Bloating/pain/constipation/diarrhea are a constant companion. Add to that a diagnosis of GERD and severe heart burn and there you have my life. Nexxium became my best friend and constant companion. There were times I could go months without having what I called a "flare-up", but something would set me off and I would then have a month or two of horrendous pain. Now I am constantly having a flare up (I say this because, it is an ongoing occurance at the moment.
This Jan I started on a new journey through what I laughingly call "health hell". YES, I need to make a joke of it or I would go crazy....literally.
I woke up one day in Jan and as I walked to the bathroom I felt a very strange thing happening to my face. It was tingling and felt numb. By the time I walked the 15 steps or so to my bathroom, the right side of my face (starting at about half way from my ear to my lips) was now swollen and HARD. Within a few minutes my lips would have put Angelina Jolie to shame, they were THAT swollen (and coming from someone who barely HAS lips that is saying something). By the time I got the see the doctor, the right side of my face is affected as is my lower left side. My doctor diagnosed me Angioedema and gives me a shot of prednisone to help. Shortly after that, I started experiencing hives, ALL OVER my body. Interestingly enough, I noticed as time went on that whenever my scalp was super itchy (yes, I get awful hives on my head to the point that afterwards, it hurts to touch my scalp) the hives on my body would be out of control. There are days I cannot go to work as my eyes are so swollen I am afraid to get behind the wheel of my car.
As a last resort, my allergist had me get a tryptase test, which measures the level of MAST cells in your system. It came back with a level of 44. Normal range is between 2 and 10. My second test showed them to still be elevated but a bit lower, it can down to 31.SO now we go in for a bone marrow biopsy and yes, it comes back that I have a higher level of mast cells in my system, BUT that silly little pesky CD25 is negative and no spindle cell morphology is seen, but mast cells are elevated on the CD 117 and Tryptase stains. So they ruled out mastocyctosis. Moving along, we next went to a dermatologist who did multiple skin biopsies which once again found large amount of mast cells within them, but no, we do not have a diagnosis of Urticaria pigmentosa, which is what the doctors were hoping for.
I was on prednisone from Jan to the beginning of June, when I decided that all it was doing was helping me gain oh so much needed EXTRA weight to tote around (being VERY facetious here) and NOT even stopping the hives as I was getting the hives while on the darn drug.
In the last month or so, the hives are worse, on my scalp, body and the angioedema is a recurring event instead of the once in a while it used to be.
Now we are waiting until my colonoscopy/endoscopy which is scheduled for Dec. My GI doctor does have an out patient clinic where it can be done, but wants to do the procedures in the hospital since we don't know how my body will react and he wants to have back up if needed. I forgot to mention the hives have now invaded my mouth and nose and they are afraid I will experience Anaphylaxis. I also carry EPI pens with me as well.
My allergist and my GI are now discussing about what biopsies to be done, stains, etc and they are hoping to have a diagnosis at this point, but who knows. In Dec my allergist wants me to have another tryptase test done and then go to Harvard to have another bone marrow done. She has also spoken about having me go to the NIH in Maryland to see a specialist there after these tests are completed. She actually spoke to him (Dr Metcalf) last month and he said I didn't really fit into any concrete category at this time and he felt my body was still in the "getting there" phase of things. Like I am not quite at the point for a definite diagnosis YET.
Meanwhile I live (badly) with the hives, with IBS that is now out of control and more of a daily struggle then ever before and no diagnosis of anything much. And of course, well meaning friends and family think you just need to suck it up as it's only hives, how bad can they be (that is until they see me in the middle of an attack) and look you've been through a lot of stress recently and you need to just relax. Yes, stress has been an issue as in a five month period my oldest son died, my mother died and my youngest son was deployed to Afghanistan ( he came back fine and in FOUR days will be out of the Marines except for his reserve duties), but it was almost a year after all that that I started with the hives. And no matter how many times, I tell them that yes stress , heat/cold can trigger a reaction, it still doesn't explain the high MAST cell levels.
Add to my issues, I have reactions to most drugs and they have to be careful what they give me. I kid you not, a child's dose of benadryl has me loopy for DAYS!!!!!. I am also severely allergic to sulfa and can't have anything with even a hint of sulfa in it as my first reaction was so severe.
So, I think that about sums up the drama of me..:lol: and I think I am off to work now as the hives have started to retreat, for a few hours at least.
Thanks for reading my little diatribe.
