So a few weeks ago I was out watering my roses, came inside and immediately got severe pain in my right eye then both eyes went blurry and it felt like my right eye was totally crossed, I couldnt see anything but blur, I was trying to look in the mirror to see if my eye was crossed couldn't see crap then realized I'd better get to the phone , my luck I was having a stroke. It felt like my right eye was going to pop out of my head. After a few minutes it went away, soreness and some temple pain afterwards........   A normal  person would have sought medical help, I react to everything, medicines, dyes on and on and thats all I could think is great, to figure this out we are going to need dye and inflamation is probably going to be a contributor and I can't take any painkillers.
I knew this wasnt mast cell related, it was nothing like when I'm out in the yard and begin to react/degranulate due to heat/or scent/or unknown outdoor trigger. I've suffered gadzillions of migranes, nothing like that either. My right temple was sore after though. The vision was still not totally clear the rest of the day. It's of course Friday when this happens, I take it easy the rest of the day. Figuring I will call GP or Optomotrist ASAp or go to emergency if it comes back this is nothing to mess with however the er staff will not buy the mast cell disorder because I've not been properly diagnosed. I no longer want to almost die in the hands of physicians with egos.......... It all subsides over the weekend and stupid me did nothing.  Well it's two weeks later and a Friday night and late today, I started getting eye pain and right temple pain and a slight migrane after awhile............
Dread, I'm guessing optometrist first, I'm hoping he's still got my files from way back, I was reacting to everything, had massive allergic congunctivitis continually for about a year it was horrible, finally I got it all under control with skin, hair and makeup products, just became horribly allergic to it all rapidly.  Emergency situations are so frustrating when you are undiagnosed, It baffles me that the amount of professionals I've seen I've never at least been labeled Idiopathic Anaphalaxis. Instead every medical situation I walk in to , I get the well what happens everyone thinks they are allergic to everything nowdays....................... My brother had and AVM that came to mind the first night, knowing I'd have to have a dye test I probably wouldn't survive. I was very happy when the pain went away! Gonna call the optometrist I think in the am.

Lisa, I wasn't freaking that it may be masto related just freaking as to what will need to be done, I react to peoples clothing, Vinyl tubing ( last time in hospital),dyes, all painkillers, so many medications it's ridiculous and many stupid things they don't believe until it happens. My hate for the doctoral world is totally conditioned not pre conceived.  My masto frustration is directly related to what they will prescribe for investigation. I do have proof of highly allergic so you are right going with that! I didn't think masto related at all, I know if they could test mast cells in my eyes I'd def have masto of the eyeballs but that it not what is going on here!
I've been through the gamut of eye medications not doing well with so many.  I'm going to the eye doc this am! It's feeling much better but so close to it happening is good maybe he will still see something!
Thanks Lisa for all your help, Highly Allergic is the phrase.

Yeah, Sandi, I knew exactly what you were freaking over and I agree with you, these are ALL issues that we face in going into any hospital arena.  But what I was trying to say and encourage you with, and of course anybody else who may read this, is that when we are in that pre-diagnosis mode, and have nothing to really back up our concerns about in going to the hospital, we've got to not keep masto as the issue on the platter of problems, it must take a lower priority, especially in a situation like yours where your major problem is not masto related and you know it.  When you don't know it, then you do have to raise the suspicion that it could be due to your "condition" but you still have to keep the word Mastocytosis out of the picture until you can see if this doctor is listening, then you can begin telling more to that doctor.  

The doctors don't know about mast cell disorders and since you've got nothing firmly diagnosed, unless you want to just out and out lie to the doctors, you've got to keep it low key.  Those people who decide to lie are setting themselves up for real trouble in doing so, so this is unwise.  But so then, how do you get around this impasse?  By telling them that you are EXTREMELY ALLERGIC.  They understand this angle and they can handle this and they will accept it much more easily than if you name a disease.   Why?  Due to how common it is.  Doctors feel comfortable with COMMON and they understand it.  This is one reason why I often will tell people who ask me that my situation is that of a disease which has just made me INSANELY ALLERGIC and everybody gets this.  They think it's funny that a disease did this, but it satisfies their need very nicely to understand this.  They then don't think I'm dying, so they don't have to feel uncomfortable around me with sympathy and that kind of stuff.  Their curiosity is satisfied and they can understand it and so then it's no longer an issue.  

Doctors, on the other hand really respect this due to how many IgE allergic patients are out there.  But since most people don't go walking around with IgE test results in their pockets, they don't go questioning as to where the allergy reactions are coming from.  So, if you say, allergic to latex and surgical tape, and meds, although they will question this a little bit, they still won't have too many problems with it and they'll be more careful with you.  They can also handle smells and chemicals like iodine and get it, but when you start talking about the cold or heat or friction on your skin, then this gets complicated and they know you don't get IgE reactions from these issues and then trying to say you have a mast cell disorder will cause them to question you, for then they start thinking that it's all in your mind.  

Again, as Dr. Castells told me, "most doctors don't understand mast cells" and this is why they don't get this easily.  They think it's an emotional issue and if they see you get anxious or nervous and begin reacting, this only reinforces it even more.  

So, then what do you do?   Well, keep your emotions tightly under wraps for one thing!!  No crying, screaming or emotional outbursts for doctors are trained to keep a very tight lid on theirs due to so many emergencies that they have to confront in a hospital setting.  They lose respect for you, like it or not.  But when you have issues with the heat and cold, just tell them that you feel the cold too much or that the heat makes you feel ill.  

When they go to prescribe things, Sandi, then this too isn't a huge issue.  You just say that you are really allergic to medications, especially antibiotics and anti-inflammatories and NSAIDs.  This will help them to realize how difficult this situation is and they will begin to listen more and more.  Then, when you see that the doctors are beginning to listen, then what you say is that you are "under investigation for a mast cell disorder".   Then their face will light up with understanding that disease may be behind all of this and they will go to their computer and look up mast cell disorders on the computer and begin to understand more of the situation and how complicated it is.

This phrase "I AM UNDER INVESTIGATION"  is an excellent phrase to use for it releases the doctor from feeling that it's his job to find those answers!!  He won't be on the defense, he won't feel like it's his responsibility, and he won't feel a need to question this since this seems to be another doctor's consideration.   He will relax and do what he can to help you.    

If they don't take this that far, Sandi, and they don't go questioning what they prescribe, then you need to take these things up with your doctors later, those who know how much you react to thing and get their guidance on it.  We can also try to help buffer the situation for you.

I'm glad you're going after it though, Sandi.  It sound's important to investigate what happened there and I think your ophthalmologist is the right guy to see first.

Let us know what happens Sandi!!!  I want to know!!

Hugs!!

Lisa



The key here is to not try to explain too much for then they begin to question where you get these opinions if you've not got a doctor to back it.  They don't trust patients and for good reason. There are too many who are either emotionally unbalanced due to their emergency situation, or they are totally ignorant and making wild guesses, or

Well, progress!!  That's good!!!  So, having your doctor find something is positive in that it helps out to find the  source of the problem!!!   I'm not happy you've got the problem but you're one step closer to perhaps fixing it Sandi, and that's good!!

So, next step, here we come!!!  

We're here for you Sandi!!!   Got my finger's crossed that its nothign serious and is 100% treatable!!

Hugs!