I'm new here and just in a hard time.  I have a 1 year old and a 4 year old.  I got sick very suddenly in December and it's been a really hard time for our family.  I just wanted to ask some questions if that's okay.  I have POTS, dysautonomia, and then lately figured out I have UP/cutaneous masto.  BUT....I have high methyllhistamines in my urine and a normal tryptase.  Sorry I say this every time but I'm new here and I figured I give my lab stuff so people know.  
My local doc is wanting to do CT scans of my chest, pelvis, abdomen and I just don't feel comfortable.  My CBC's are normal.  I guess I'm just reaching out here.  Lisa, sweet Lisa, has helped me so much but I feel bad asking her all the time.  I really hate subjecting myself to all this radiation if not necessary.  Well I'd rather get 2 bmb's than get these ct scans honestly.  If this is the standard workup for all of us, then I'll give in.  Just wanted to see if this is what we all have to get.

Secondly, I am planning on trying to see Dr. Afrin, God willing, in June.  I live in South Florida.  I'm not stable enough to get on a plane to the best people in Boston.  People on here don't seem to prefer him but I can't find anything bad about the guy and he's reasonably close to my house.

Lastly, I was taking Claritin and I felt like I was reacting to it.  I had a really bad episode 2 weeks ago.  I started taking Claritin every day and I just wouldn't get better.  I stopped taking the Claritin b/c that was the newest addition in my life.  That helped me some.  Then I started taking Singulair and that helped a little although my adrenaline surges are something else!!  They are tough.   I feel like I'm reacting to the silliest things.  Lettuce, honeydew, Claritin for pete's sake.  I lived my whole life doing pretty well although I got hives all the time.  Now I can't really eat much or I'm really ill.  I bought some zyrtec but I'm scared to take it because I took benadryl the other night and it made my heart feel really strange.  Like it was pumping really slowly or something.  Ugh!  It was awful!!  I went back to taking 6 mg of my beta blocker b/c my tachycardia was really hard to deal with.  

Do these antihistamines cause weird feelings in the heart?  I want to get help for the mast cell stuff but I'm scared now to take any of the meds.

Thank you all for reading and helping in any way.

Jared,

Don't be silly, sweety, you're not asking too much and i"m all too happy to help you!!

This is quick cause I've got to run -   Those CTs are really very necessary for two reasons - one is that the doctors really need to see how your organs are doing.  This is because the disease can indeed invade certain organs and tissues and this is the very best way to make sure that things are fine!!    The second reason is as a baseline.   A baseline is the first reading of something and from that point on if any changes occurr then they can see those changes and compare as to how things were before!   I've had changes and when things went back to normal we knew it due to the exams.  

Don't worry about he radiation - you have to weigh the risks as to what is more threatening   A couple of CTS only once in a while, or not see that something more immanent and life threatening is going on???    The chances of those few CTs causing issues are not high.  You and your doctors need to make sure the mast cells are not damaging anything and this is the safest way to do so.  The BMB will not say anything as to how your liver, pancrease, spleen and lymph nodes are doing!  This is why we do these scans.   However, before taking any scans with contrast, you must be premedicated!!

Hugs!!!

Lisa

ONLY 2 CT'S?????  


Well, I have a feeling then that I could light up my entire town just on how much I must be glowing cause I have 5 CTs in my first year of searching!!!!!

I've been through 3 CTs and 1 MRI just in the 6 months after my surgery! I've also had a nuclear study about 6 or 7 Xrays and even a bone density exam!   I've got an orthopedist asking for another CT for my back and then I also have to do another CT in a while to look at my vascular system!!!   I've done a total of about 10 CTs in the past 4 years!!!  

Yet, I still say, I will continue to confront them if this is what I must do for I know where the real threats to my health are coming from and the radiation is not it!  It's my aneurysms and these are what I must protect myself against.  Each of us must consider where the real threat is coming from, and for some of us, doing one CT a year is not going to push you over the edge, especially a baseline study.

When our doctors submit us to these exams, they must take a look not only as to whether there is any organ damage happening, but they need to consider the fact that our lymph nodes deep within our body as well as our skeletal system may be under attack.  Masto can be aggressive and it can do real damage - it's rare, but it does happen and when your doctors are doing your workup they must find out what your baseline is and how your body is being affected and whether or not you are in danger.  They have very necessary exams they need to ask for in order to rule out whatever the disease may be doing to you so that they can then take steps to fight the disease if it is indeed in an aggressive form and you are in danger.  Once they can determine that your life is not in danger, then they can relax and take a different approach with your treatment.  But in the beginning,t his is what must be done - it is correct procedure.  

Remember, your doctor is not your enemy.  He's on your side trying to find out what is wrong with you in the best manner possible.  Our doctors don't know and can't know what is wrong just cause you sat in his chair.  He's as blind and dumb as you are as to what the matter is.  He can't see what the problem is and he must use the exams as a means to give him vision as to what is going on with you.  Based upon these exames, he begins to paint a picture as to what is the matter.  

Remember also that what is so shocking to us and takes a while for us patients to wake up to is that we are no longer typical people who have a cold or flu and when we go to the doctor our problem is simple and easy to resolve.  A gyno doesn't have any difficulty diagnosing that a woman is pregnant in her 9th month, but he does when she's only 1 or 2 along cause then he's blind and he can only go by her symptoms and his touch.  Well, our doctors can't even rely upon their touch, which speaks reams to a physician.

When we go into a doctor with a constellation of symptoms like we patients present to them, there are hordes of diseases which produce like symptoms and it's then a situation of where they must INVESTIGATE us, trying everything they can within their knowledge to find out what is wrong with us!!!

My gyno KNEW that something wasnt right with me a week following my release from the hospital after my hsyterectomy.  I had begun complaining of dyspnea and fainting and when I went into his office for my 1st post-op checkup I went into anaphylaxis right there!  I about fainted in his arms!  He hospitalized me immediately and began his searching - he had 3 definite things he needed to rule out first:  infection, anemia and a pulmonary embolism!!!   That search landed me in the ICU because they found a subdural hemorrhage, which is common enough for a hysterectomy, but it was the behavior that accompanied it which freaked the doctors out because they no sooner asked me to hold my breath when I I fainted right away and they almost couldn't pull me out of it!  They didn't find any pulmonary embolism but I had a 2 day stint in the ICU due to this.  My gyno hadn't the slightest idea of what was wrong and he ended up hospitalizing me twice more before I began to gain headway.  It was anaphylaxis all three times but it took as a full year to find out this much!!  In that time period my gyno sent me to all of his colleagues he could and they kept tripping up on the hysterectomy thinking it had caused psychossomatic symptoms!  Yet, when my gyno got fed up with the stupidity of his colleagues, he took my case back in hand cause I was in his office when I went into a mini crisis and he saw me turn such a deep, strong red along with such a strong, gripping dyspnea that I about passed out and it lasted a full 5 or so minutes and he sat there observing me with such a serious look on his face - gathering clues!  He was CONVINCED something was dreadfully wrong and he used those clues and began RESEARCHING and it was a mere GYNO who was who put the clues together and raised the flag for either the carcinoid syndrome or masto and from that point on, we took it from there and began YEARS of medical testing and investigating where I have challenged every single doctor who has had me in his office!!

My friends, what we go through is an INVESTIGATION.  It's very hard work for our doctors for they are TOTALLY BLIND especially if they've never even heard of the disease before!   Our cases are probably the most challenging cases our doctors will ever have in their ENTIRE careers!!   It is incredibly HARD WORK for them!

So, I realize that we all are freaked out of our minds over these situations we are living in, but believe me, our doctors are really doing their very best to try to find the answers for us and they are ON OUR SIDES!!

So, in considering all of this, remember, you've got to coorperate with your doctors, within reason, for they are trying to find the answers.   Those of us who have been through an extensive workup are here trying to help you not only to protect yourselves, but to also help you know if your doctors do indeed understand what they are doing, for so many do not and they get understandably lost.  This way, with some of our help, we can help you and your families more secure that yes, your doctors are indeed helping you.  

Well, I've talked too much once again!  Sorry Gang!!

Lisa
 

Lisa, is there a reason why they need to do a CT scan, rather than an MRI? I haven't gotten anywhere near this stage in my diagnosis yet, and have only had to have one CT scan so far, but have had many MRIs and ultrasounds.

Susan,

To the best of my knowledge, there are certain tissues which are better seen in a CT, the blood vessels is one area.  I believe that the soft tissues are better seen, but don't quote me on that!

Lisa

Well,  I just learned something very important at least for me.  The last time I did an MRI, I flushed and it made me faint!  I did NOT have any bad reacting and I had no contrast, but it did cause me to do some reacting and I wondered why!  I thought perhaps it was the "nervousness" but heck, I've been through SO MANY exams and procedures and after open heart surgery, an MRI is a walk in the park!  So I was baffled to why the reacting!   It's the way those hydrogen molecules must wobble!!!  They must somehow get the mast cells to get a bit animated as well without out and out triggering them.   And if I remember, little Brie also had issues and I think that in SOME OF US who are just extra sensitive, this makes full sense!  

Interesting theory anyway!

Lisa

Interesting info on the MRI/CT scan differences! Thanks for finding all of that, Lisa.

So it sounds like, with the CT, you must decide how strong the possibility is that you may have a particular problem, and how much the risk is of using the CT scanner. It is really the case with all treatments, it is just that most treatments have very little risk, and a good chance of helping.

Ramona, I don't think that a whole body CT scan would have the same risk as a more focused scan. Don't they run the xrays in overlapping circles of radiation? If they were doing the entire body, there would be much more exposure than if they just did an organ, or a body segment.  I think I personally would still try to limit its use, unless there was good reason to be looking. But I tend to be conservative with those types of things.

Then there's the PT scan....  Has anyone had any experience with that?  I had one about 15 years ago with no problem, when I had SM, but was undiagnosed.