Here’s some more info about me. During a flare up I get these symptoms:
Severe pain in chest and lower-back, and pain in all joints is worse.
I was having very violent muscle spasms and tics to move or make noise. Since going on a grain free, soy free, lactose and casein free, nut free low fodmap diet and taking zantac and zyrtec my spasms are only occurring in one or two limbs at a time but they still shake violently.
If I try to move a limb it spasms.
Head / Eyes
pressure and throbbing on back and front of head
Neck and shoulder and upper back pain
pressure on eyes that seems to vary throughout the day, it is painful to move my eyes to the sides most of the time
black pulsing flashes
white flashes (these seem happen more when I take tramadol)
Sensitivity to visual stimuli
Tunnel vision when crashing
heart rate increases (propranalol helps with this but I become dependent on it if I take it more than once every few days and I build up a tolerance fast)
I will feel like it is 90* in a room temperature room and then when I crash I will be freezing.
These symptoms get worse during a flare up but I have these all throughout a typical day.
Thoughts racing constantly
Unable to concentrate
Will completely forget what I was thinking / talking about
Tapping of foot
The neurologist I saw said that my spine MRI was normal and that my brain MRI was “probably normal” when I mentioned that it looked like my corpus callosum had an abnormal curvature similar to one posted on this forum.
I saw an ophthalmologist and they dilated my eyes to look inside and also checked the pressure. The ophthalmologist said it looked fine, but this was after I changed my diet and started taking zantac and zyrtec and was having a really good day, I was able to walk with braces and a cane instead of being in a wheel chair, no spasms, and no feeling of pressure on my eyes or head. My symptoms have gotten worse since then, but even though I am stuck in bed are significantly better than where I was before I changed my diet and took zyrtec + zantac. The zantac + zyrtec does seem to help very well with the OI. I have less dizziness, and lightheadedness upon standing, no longer have my vision go black upon standing, but I still have increases in heart rate and shortness of breath which seems to come and go throughout the day but I’m also stuck in bed most of the time because of my knee which has been in a lot of pain with weight on it or movement and is rotating like it has a PCL injury for a couple weeks, and about a month ago before I changed my diet and started zantac + zyrtec I would have violent muscle spasms in all my limbs and neck upon standing.
The mastocytosis society of canada website listed the signs and symptoms of mastocytosis and MCAS and I have had nearly all of them at one point or another in my life, most of those currently, and so have my siblings, cousin, and grandmother.
I have been diagnosed with celiac disease and IBS. I have vitamin D malabsorption for sure, but not sure about the rest. All my blood tests came back “normal”. I try to take daily epsom salt baths, it helps me a lot with muscle pain but it doesn’t touch the pain in my lower back which is the most sever pain I have. I am going to start taking a magnesium supplement and try to get a prescription for cromylin to see if it helps.
From the last week of September to the end of October while I was still in New Orleans I saw the head neurologist at Tulane twice, an ophthalmologist, geneticist (I already have an EDS diagnosis from Dr. Neillson at Cincinnati Children’s, but the neurologist thought this geneticist would be able to help find a diagnosis but she was clueless on EDS), a sleep doctor that only wanted to treat me for sleep apnea which he assumed I had without evidence, and was followed by a pediatrician that tried a few drugs which all failed to do any good, ropinerol and meclizine being the ones I remember off the top of my head. But my parents moved me out of my dorm and back to Indianapolis because I couldn’t keep up with school and they said they would be better able to help me if I was back at home. However since I got back here they have dismissed my symptoms and refused to help me get medical attention outside of anorexia clinics.