Kim,

The contrast used for an MRI is different from the contrast used for a CT.  The contrast for a CT uses iodine and related material as a major component and this is indeed a POTENTIAL danger to us for it is a known mast cell degranulator.

However MRI uses gladiolum and this, although also a toxic compound, doesn't usually create problems for us.

I must say, however, when I had an MRI done of my brain in December it caused me to flush as well as to faint and I didn't have the contrast!   There is something about the magnetism which I suspect is the issue here.  

I did not have any numbness.   Please be very careful with these exames but most especially those of the CT and X-rays that used that contrast.  Brie must be premedicated for those!!  And it would not be a bad idea to have an anesthesiologist present either.  You never know how a masto patient will react to contrast!!  It's not worth underestimating it.  

Lisa

I hope Brie feels better quickly!  Poor thing!

Lisa and Deb Mc;
    Thanks for the info. I never even thought about the contrast being different for MRI's and CT's - makes total sence.  Brie is CERTAINLy A TROOPER!  She has been through more in the last 2 1/2 years than I have been in 46 years!  As she tolerates it all very well.  She too wants them to "find what's wrong" and is getting old enough to comprehend some of this and is beginning to ask many more questions and for her age is starting to understand things pretty well.  She is struggling in the area of having chocolate in moderation though  

                                                       Kim

Lisa;

    Your description of knowing something is not right in your body but being unable to describe it makes sense to me as the last 2 SEVERE episodes of dizzyness (and a few other times) that Brie has had she doesn't look well at all and for lack of a better term she looks ill and she just keeps saying "I don't feel good" but can't describe exactly what it is or why she doesn't feel well (other than being dizzy). She seperates the dizziness from not feeling well but is unable to express what else she is experiencing. She'll deny nausea, stomachaches, etc. and just keep repeating "I don't feel well."

   This is also seperate from her "pain".  The pain I think is true pain as she says it hurts and she whines or cries and has me massage the areas (such as foot, arm, leg, back).  She will sometimes limp for a little bit if it is in the leg or foot.  She is unable to get settled / situated to find a comfortable position when it is in her back, etc.  She initially had pain in her feet frequently for a year and a half and I alsways contributed it to growing pains.  It wasn't until the last several months that the pain can now be anywhere in her body.  

         She has experienced the numbness of her tongue and lips but never another body area until the leg during the MRI.

      I am anxiously awaiting the mast cell stain results from her hand biopsies 1 1/2 years ago and the MRI results.  They will probably come back negative (as most everything else has)... but at some point SOMETHING has to show.

                                                        Stay Well,  Kim

YEAH!!!! Brieann did it again.... she is batting 100% at "performing" for her local Dr. who has been so kind as to jump in and try to help us out with her difficult issues and diagnosis of such.

She has had 4 visits with him thus far and each and every time she has displayed for him a multitude of the symptoms she goes through.  It is so nice and comforting to have a Dr. actually see this and have all of this in his notes to send to other Dr.'s.  At times I have felt that some of her Dr.'s think that I am just a "Hystrionic Mom" but I know they take what another Professional sees first hand much more seriously.

During the last 3 visits he was so concerned that he actually picked up the phone and called other Dr.'s asking them for help or making recommendations for further tests, etc. as we sat in the office with him!

I am so pleased with him I wanted to hug him (or cry with relief).   I am so used to her Dr.'s seeing something and brushing it off as an isolated incident with no known cause.  Or dealing with the frustration of being 13 hours away from her specialists and not being able to call and get her in right away so they can see this 1st hand.  When we see them twice a year they just don't understand that these are DAILY OCCURANCES for her.  (to one extent or another).

Today she again flushed, began getting a stomachache and bone pain AND she broke out in a TOTALLY NEW type of rash on her chest and back that I have never seen on her before!  He was so intrigued and he actually considered having me run her over to the Dermatologist right away for another biopsy.  But Brie was opposed to this and she has been through so many that we felt it best to wait at this point.

The rash was very small (a little bigger than a pencil lead) and they were raised and looked like bumps throughout her entire back and parts of her chest and abdomen.  They itched pretty significantly.  He rubbed on a couple of them lightly and within a few minutes those areas turned into a large red splotch.  He was quite impressed - especially with the amount of meds she is on and yet she still breaks out with different things about 95% the days. (Yes... this is still a great improvement for her!... as they usually are not near as severe as they used to be).

He has been studying also !  He knew little about Mastocytosis or MCAD disease when we 1st went to him - but things he talked about during our last visit told me he is taking this seriously and had been educating himself.  And today I was even MORE impressed with his knowledge!  

He really wants her to have a bone marrow test done by one of the Masto specialist.  He first wants to see what some upcoming appointments with a couple of other Dr.'s and tests will show and then he is ready to personally call Mayo and say "do you want to look at this seriously and follow it up or should I contact Dr.'s in Boston?"  Yes... those were his words!

He feels strongly (more so than me) that since she is already established at Mayo with several specialists that this is the place to stay if possible.  She needs to see a Pediatric Neurologist and her Pediatric GI wants Mayo to take a look at the GI issues so this makes some sense to me.  We can get it all done in one place.  But I am not sure about the Masto specialist there and he knows this - we have had a couple of heated discussions about this already      He also feels that since it is closer for us to travel that it would be easier for us.  I hear what he is saying and he is well aware that this is not my first choice but since I have not had much luck getting the Dr.'s in Boston to take a look at her I truly feel my hands are tied at this point.  And just having a Dr. back us 100% on this possible diagnosis and to push for a diagnosis with us means a lot to me.  My ultimate goal is to have a diagnosis and proper treatment for Brieann... and at this point I will take that any way that I can get it.

Her MRI was negative... And we expected this... but he wants to "make sure we are not missing something even more serious before she is given a diagnosis of MCAD and then something else gets overlooked as people stop looking for other causes."

He wrote the prescription for Gastrocrom... now I just need to wait and see if my Insurance will cover this.  When I called the Pharmacist on it he said that it is "Investigational" and they may not.  I sure hope this is not the case as we keep adding med after med and increasing the doses of them and we still can't get her symptom free for more than a day at a time here and there.  It is so hearbreaking to see her go through this  

                                                                      Kim

Kim

One way or another, you are getting there!!!!   This doctor sounds like he's become Kim's major advocate and he's definitely the dream doctor we all wish we had!!   I can't tell you how happy and relieved I am!!!!  It's tremendous that he's become so intrigued by the masto that he's making great strides like these!  This is tremendous!  You never know how something like this may end up affecting him and his career choices - this is how my dermatologist ended up becoming a masto specialist for she was a pediatrician and became enamoured with the disease and returned to med school!   One thing I know, it seems to me that Brie has found her doctor and that as she matures and ages, he'll likely keep her as his biggest "kid"!   This is a very good situation for her!  Congrats!!!


Kim, I wouldn't say that you've not had any luck with the doctors in Boston, for I do think that you have.  Yet, I think it's time you get him to speak with Dr. Castells himself, Kim.   I think that your doctor has some very valid points, but you know as well as we do that although your doctor may have his convictions, unless he were to accompany you and Brie there and personally advocate Brie's case with these doctors, you may find your efforts all in vain!  

What your doctor doesn't realize is that when we patients go to see other doctors, they will judge our cases only within their knowledge and capacity and it doesn't matter what our other doctors say or insist, they will only judge our cases as according to what they think and see!!   With masto, this is what ends up causing us so much grief in that one doctor has his convictions but the other just doesn't see it!!!

This is why I think your argument against MAYO is totally VALID.  You've been that route before and they couldn't see it and why invest in doctors who aren't going to see it again?!  

Kim, ask your doctor to speak with Dr. Castells in that if he sees the need for neurological exams etc, he must not think that they aren't at B&W!  There are incredible doctors there - it's HARVARD!  Mayo has not one benefit over them for B&Ws doctors are in every single field and Dr. Castells will make sure that Brie is seen by all the doctors she needs if your doctor can speak up and work with Dr. Castells to make sure that when Brie goes there that other doctors are also set up for this same time period so that she can see perhaps 2 or 3 doctors in a day.  Perhaps they could even hospitalize her so that Brie can be gone over by a team of doctors for her benefit and comfort.  I'm sure that B&W has this ability, but it's going to take your doctor's involvement with Dr. Castells to rig this up for Brie.

If he can't personally go with you to Mayo, Kim, then I honestly agree with you that B&W is the best place for Brie.  But this can't be a singular visit to see only Dr. Castells, but that it needs to be a visit which will give Brie an overall workup by several specialists and this must be orchestrated so that the visit is all encompassing.  It may take some working to get this arranged, but if you doctor will get himself involved in this, I'm sure that this can be arranged!  At least I would hope so!!!

Lisa

Sorry about all of the typos in that last post.  My fingers can't move as fast as my thoughts sometimes and I am horrible at previewing my messages.... I wonder if we can get spell check on this forum  

Heather;

    I am so embarrassed!  I checked every square / option above the reply box and couldn't find spell check.  I didn't even see the underlined "spell check" to the right of the reply box! LOL  

Deb Mc;

    We have been so very fortunate to have this Dr. jump in here and educate himself both on Brie's issues and history and MCAD / Mastocytosis.  He is an Allergist / Immunologist.  He was actually trained at NIH under Dr. Metcalfe and a few others.  Although he doesn't deal with MCAD / Mastocytosis in his day to day practice. He also is not a Pediatric Dr. per say....  But he does see many children for allergy testing and allergy shots.  That is in fact how I got to know him.  He has treated my sons asthma for about 3 years now.  I truly believe that it was because of this and the relationship we had built over time that he has taken on this enormous feat to try to help Brie.  
I count my blessings with this as Brie has about 15 different Dr.'s that she has seen now and none of them wanted to tackle this with us.

                                                                                     Kim