Welcome back Julie. I'm probably new here since you were last active on the forum. I'm not well educated yet on mast cell issues but i'm working on it. I'm so sorry to hear about your increased symptoms and decline in your life. I'm right there with you girl!
I started way back in 2006 with shortness of breath. Saw a pulmonologist with no help. I also started getting blotchy when exposed to the sun or taking a shower. Both were managable so i just dealt with it. Then in 2009 i ended up with debilatating diarrhea. Had two colonoscopies and still no help. Over the last two years other symptoms showed up like the           joint/bone pain, burning mouth/metallic taste/sores in the mouth, facial   rash like rosacia, cognitive issues, hair loss and more. I also experience a bizzare sort of out of touch sensation. It usually starts with heart palpitations and my blood pressure rising amd then BP drops Low. When it does that my face and lips tingle, dizziness and a strange disconnect feeling comes over me and i just sit motionless and dont talk. When my BP starts to rise back to normal i begin to feel better. Just real tired after all that. The whole ordeal lasts maybe 20 minutes for me.
Long story short and about 20 doctors later i finally went to Dr Afrin. In  fact its only been 2 weeks ago and i'm still waiting for complete test results. He is a brillant man and cares for his patience. He has a true passion in learning more and more about mast cell diseases to help others.
Your collection of symptoms and when they came about sound very similar to my own. That article Afrin wrote, could you share that with me? I would love to read it. I hope you get in to see him soon. It's hard to get an appointment with him. The key is once you schedule your appointment (which will probably be sometime around three months out) call back as often as you can for cancelations. Just be prepared to pack and go:) a couple of us here did it that way.
Hang in there girl. Sounds like you are going in the right direction in seeing a mast cell specialist. In the meantime maybe some of the more educated people hete will come along with some great tips and advice.
Have you tried the histamine diet?
Kim

Hi Julie!!!  Welcome back!  I´m sorry to have to say that though!!!  Better if you weren´t here cause then it would mean that you were feeling better!!

Julie, I´m only now beginning to delve into the neurological relationship of masto and how it affects us.   There is virtually NOTHING out there to go on for although they know that there are MC mediators which affect the neurological system, and they also know of other mediators which affect it as well, there are so very few case histories written up on masto patients and their neurological issues.  

There are certain things I´ve learned about my own case which may help you with yours.  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.  This right there is important.   When I was undergoing an investigation by an authority in epilepsy, these were his own conclusions for prior to my consultation and his exams with me I began reporting to him my syncope each and every time it happened for about 2 months prior to our consultation.  So, by the time I saw him, he had already formed these conclusions, which I had told him anyway.   This was one of the things which helped him rule out epilepsy as the reason for my episodes of "absence".  

In my process of trying to find articles on the neurological aspect of masto, I went to Dr. Google and picked his brain.  This is what I suggest you do.  I will try to find my articles for you but my computer crashed a bit ago and I lost a good bit of my research ( BOOOHOOOO!!!)  However, I can tell you that seizures are something which has been connected to one case history.  Parkinsons too I believe as well as epilepsy.  

I very honestly think you need to speak with Dr. Afrin about this.  Ask him if he has a colleague at the university there who is a neurologist and who can do some SERIOUS investigating.  Anything which can be RULED OUT is an immense help when trying to find answers.   If that neurologist can do some basic workup, looking into some of these other issues, and they can be ruled out, then it confirms that what is going on with you is indeed masto related.

I´m going to go back through my correspondence where I sent some of these neurological articles to this neurologist to see if I can recuperate some of these files to send to you.   PM we with your email and I´ll try to get back to you soon.  (I´ve got a few pending emails from others!  but I´m trying to get back to everybody!!  ).   In the meantime, got o Dr. Google and google neurology, neurological, seizures epilepsy mast cells and mastocytosis  - try all these combos and see what kind of information you come up with.  This may help you.

I hope this helps!!

Lisa

I just found another too!!   If you click on this link, you can download it for yourselves!

http://www.mastcellmaster.com/documents/Mastocytosis/Mastocytosis--seizures.pdf

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%20mouth

We 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:

Quote:
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. Quote:
 

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

Kim, not everything we go through can be blamed on masto.  The next time you get a headache like that, where the pain is truly that debilitating, don't presume it's the masto for it may not be.  What if you have an aneurysm or a tumor or some other issue going on?!   This is why it's very important that you don't just pass off something different as masto until you've had it happen a few times.  

Example:  I had a situation of sudden intense pain raising up in my chest from just under my sternum.  It put me into a cold sweat and the pain was impressive.  It caused dyspnea and shakiness and the awful malaise I've often had.  I presumed it was some kind of masto attack and I began taking my meds.  The only medication I took which was a bit different was omeprazol because I was burping too.   The crisis passed, but when I described it to my doctors they said it sounded like it could be a possible heart attack instead!  I couldn't figure out what it was for it was not my typical crisis situation for I've never gone into a cold sweat before.   So when it happened a second time I managed to speak with my dermatologist and she said GO TO THE HOSPITAL!!  IT MAY BE A HEART ATTACK!!   So, off I went and they kept me in the ER overnight and ran a few tests and it checked out negative for the enzymes which prove a heart attack.  So, having ruled it out, having ruled out anaphylaxis, they recognized it for a REFLUX CRISIS!!   My gastro put me on extra doses of omeprazol for a while until things settled back down!!


So, don't just presume it's masto.  You need to go to the ER the next time something like that happens and have them check you out for anything else it could be.   In ruling out the other possibilities, THEN you can blame the masto, but only then!

Lisa

Susan, PM me your email!

angie:
Have burning nerves over most of my body but never lips. As far as the hands & especially the feet. What I started a while back with atleast temporary help is spraying the feet with gastrocrom. I take the vials & empty them into an old nasalcrom bottle & spray them. I came up with the idea & my doc said go far it couldn't hurt anything.Then rub some of this aloe gel afterwards that I found at drugstore.com.
Then when really hurt use some corticool & the aloe gel. The lips are
a tough one. I wouldn't try ice as my feet flush more when I ice them.
I think if mine did, the first thing I would try is maybe some mouthwash, but the kind without alcohol, but that's a tough one.
MikeV