Hello all,
Thank you so much for your responses! All great information!
Kim – I’ve been following your posts about Dr. Afrin and your positive response to him helped me make the decision of whether I would head to north to Boston or south to Charleston for my consultation. Your posts were incredibly helpful, so many thanks for posting your experiences! You’ll never know how much they helped.
I found Dr. Afrin’s MCAD diagnostic criteria article through a Google search and from that point on I felt like he might be the one that I wanted to have consult on my case. (My CGA is sky high and he is one of the few who lists that as a marker for MCAD, so that initially caught my eye.) When I emailed him and mentioned the burning mouth symptom (that none of my doctors understood) he sent me his article on MCAD and burning mouth syndrome. I took that as a sign that I was meant to find my way to him. (I can’t find the full “burning mouth syndrome” article online, but here’s the PubMed citation. I’ll try and send it to you in a PM if you like.)
http://www.ncbi.nlm.nih.gov/pubmed?term=Afrin%20burning%20mouthWe certainly do seem to have some overlap symptoms, particularly the weird neuro symptoms. Honestly, I can cope with a lot, but these neuro symptoms have put me over the edge. I’m dizzy, off balance, foggy, “heavy headed”, have trouble talking and swallowing and am having tremors. I think I’ll actually be relieved if all of this is mast cell driven. I need a thorough neuro exam, which I’m going to work on setting up in the coming week. Hopefully that will provide some answers. In the meantime, no driving or much of anything else that causes the neuro symptoms to worsen.
I haven’t tried the low histamine diet. I keep debating about it and whether it would help. My diet is so limited now that giving up more food is less than exciting. I’m a vegetarian and I don’t eat soy or gluten as well. I’m not sure what I could actually eat if I went on the low histamine diet in addition to my other limited foods. Do you follow the low histamine diet? If so, has it helped?
Judy – Thanks for the input and no worries about “kidnapping” the post….we are all in this together! I know that seizure disorders can be very difficult to diagnose and treat as symptoms can be varying and transient, so this is something I’m just going to have to watch. Hopefully the neuro exam will help shed light on if it is in fact some type of seizure I’m experiencing, or something else altogether. I hope your son continues to show improvement.
Lisa – Very helpful info, thanks so much! You said:
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First of all, reflect upon these symptoms - do they EVER happen any time other than when you are having some kind of acute degranulation? Did it ever happen prior to your masto symptoms? If the answer is no to both of these, the this is most likely mast cell mediator related.
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The answer is “no” to both questions, at least to this point. The first time I had one of these episodes I also had a huge hive in the middle of my chest. The second time I had a big hive on my face. (That was also accompanied by vomiting.) The third time I was going through a severe flare of burning mouth symptoms. (Sidebar – This was at the allergist’s office after I ran up a flight of stairs to his office. He told me the event was anxiety brought on by overuse of steroids. He then called 911, {heart rate was 120 and he freaked out.} sent me to the ER and then advised the ER doc not to give me steroids because and I quote “She doesn’t have a mast cell disorder.” GRRRRR! Needless to say he’s my former allergist now!) Then the two episodes from last weekend occurred in the midst of neuro and burning mouth flare up. I can’t think of a single time when an episode occurred in isolation of suspected mast cell activity. Great framework for thinking about it Lisa. Very helpful. Seems suspicious that it is yet another part of mast cell activity, but it warrants a rule in/rule out look as well. I have asked Dr. Afrin about it, so it will be interesting to get his feedback.
I haven’t used Dr. Google, but I have searched under PubMed for articles on neuro aspects of mast cell disorders. I didn’t find too much, but the one article I did find I took to my neuro (now ex-neuro because he dropped my insurance plan last month) and he scanned it briefly and then commented that my symptoms weren’t from mast cells. Hmmm, really? How do you conclude that in 30 seconds, with no background knowledge in mast cell disorders? Ridiculous!
Last week I took .5 of Ativan when I was starting to have an episode and it helped so much. This makes me more suspicious that these events are “seizure like” in nature. I guess time will tell.
Mast cell disorders are so tricky because they present in as many ways as there are mediators. It gets old...real old. But, I'm glad to be back here with kindred spirits.
Thank you all!!!
Julie