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Are These Possible Mast Cell Disorder Symptoms?


Katybug

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Hi Folks!

I just noticed while going through several years of labs that I have consistently had a slightly raised MCH (mean corpuscular hemoglobin) and low globulin readings (over 4 yrs.). The readings are so close to the "normal range" that I doubt a doctor would have been concerned when just looking at one blood test. It took me 4 yrs. to notice that there was this pattern in my bloodwork. My research says these results can possibly be related to mast cell disorders.

Here are other things in my history that may or may not be things related to mast cell issues:

- Stomach issues developed when I was 5 – reflux, motility issues, vomiting, continued on and off for whole life

- Now have hiatal hernia

- Now have severe reflux, vomiting, diarrhea (vomiting and diarrhea are always extremely acidic), abdominal cramping

- Drug allergies since childhood to several antibiotics and motrin

- Unable to use lotions on legs including some prescribed by docs or shaving cream or even soap to shave – itch and get significant folliculitis

- Severe environmental allergies when young, still experience some level of this

- Ended up having to stop allergy shots in high school as I ended up reacting with severe, full body hives about 2/3 of the way through the initial phase of increasing dosage, had to take hydroxyzine and prednisone for weeks to get rid of the hives

- Had unknown viral infection my sophomore yr of high school during which I got red bumps on my fingers. Also had a rash on body during the initial illness. Docs (PCP and dermatologist) were unable to clearly ID what the bumps or infection were. Have continued to get these bumps any time I get a viral infection. (Sometimes will get bumps without any other symptoms of any kind of infection.)

- Often get hives when I am feeling particularly unwell usually in small of back or on face/neck. Also get rash across my buttocks and thighs when I have hives in small of back.

- Often seem to have acne breakouts on my face when I am not feeling well. Its like my skin gets toxic when I have really bad periods with my other POTS and GI symptoms.

- Sometimes have what seems to be over-reactions to bug bites (and a bee sting 2 summers ago.) Welts get very big, swollen, painful and take many wks (8-12) to heal and go away. Other times I won’t reacte to bite at all or welt will heal within an hr. Very strange.

- Bad reactions to Lexapro and Paxil – brought on acute POTS symptoms, weird reactions to other meds – need huge amts of novacaine to numb mouth, gas dentist gives to relax patient doesn’t work on me at all, morphine didn’t help pain at all or even affect me during my kidney stone issues – had to be given Delauded and Phenegran, benadryl, promethazine, belladonna all seem to help reduce all of my symptoms.Verapimil also gave me some overall relief in addition to my migraines being treated.

- Pattern of high MCH and low Globulin on blood tests

- Unexplained chronic joint and muscle pain (possibly aftermath of the tick-borne illness)

Are these the types of symptoms those of you with diagnosed mast cell issues have experienced through the years? Do you think I should pursue this with my docs? Any insight into the daily symptoms is appreciated.

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Hi Lieze. Yes and that's, like, only 1/3 - 1/2 of the picture. I have an appt on Thursday with my POTS specialist during which we are supposed to discuss what further testing we want to do tolook for root cause things to treat. Looking through my labs from previous docs is what made me notice the pattern in the blood work and then start research. That opened the Pandora's Box on all the past stuff. It was always weird stuff that either was not explained/treated well or not explained at all. And I never even thought to bring it up to this doc, but, now it looks like it could be part of the picture. This doc seems very reserved but is surprisingly open-minded when you get to know him so I feel like he will be attentive. I'm just trying to get a picture if this is the kind of stuff that the peeps with MCAD experience day to day (you know how generic the symptom lists are in online resources.)

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