My story is REALLY long, so I'll try to make it brief.  About 9 years ago I started having some abnormal issues (allergies, fatigue, varying BP).  If I could turn back time, I would take those issues in a heartbeat, as I was still functioning at about 90%!

I became pregnant during this time, had a stillborn baby at 22 weeks, followed by a miscarriage 3 months later, followed by getting pregnant 3 months later (healthy baby).  I know my body was under a great deal of stress due to all it had been through.  When my son was 2 months old we moved into a different house.  I continued to have what I now consider minor inconveniences in my health.   I will still completely active, even doing some intense running on my treatdmill in the basement.  5 months after we moved in, my husband ripped up the bathroom floor to remodel and it was nothing but mold.  The next day I crashed....severely.....thus began my 8 year journey.  (We did move out of the house and sold ALL of our belongings.  Our house tested positive for 3 types of bad mold and the mold content in the air of our basement where I had been running was 99.9%!)

I have been to more doctors, had more tests run, and tried more medications/supplements than I thought was possible.  Finally in February I made some progress when I was officially diagnosed with POTS.  Now I am trying to figure out the cause of my POTS.  I have no idea if I have a mast cell disorder, but it is one cause that seems highly likely.  I already had my tryptase tested (4) on a "good" day.

I have been in contact via email with both Dr. Akin and Dr. Afrin.  Both were very prompt with a response.  Below is the information I provided them.  I live a good distance from both of them.  My husband and I are trying to decide what our next step is.  Travel?  Is there a doc closer?  Is it even worth pursuing?  Frankly, I am tired of going to all of these doctors and making little progress, so I am not up for trying any doctor that won't take me serious or that doesn't deal with unique situations.

Any suggestions are welcome!  I appreciate your input

Kate

Positive Test Results:
POTS
Low white blood cell count
Low platelet count
MVP


Symptoms (vary by day):  
Fatigue
Muscle, joint, and bone aches and pains
Itching all over
Exercise intolerance
Visual disturbances
Tachycardia, varying BP, forceful heartbeat, and light-headedness
Heavy and symptomatic menses
Brain fog and memory problems
Headaches
Flushing
Constipation, abdominal pain, and bloating
Depression/anxiety
Medication Intolerance
Cold hands
Acne and mouth ulcers
Head and Nose Stuffiness (maybe allergies?)
Ringing in Ears


Current Medications
Multi-Vitamin
Magnesium
1 Liter of saline infused each week (at hematologist office)
Claritin
Zantac

Nancy,

Thank you for the response.  MVP is mitral valve prolapse of the heart.  I get the saline because POTS causes me to get dehydrated and keeps more blood to my brain.

Kate

Ramona,

Thanks for the kind reply and great information.  I am definitely an advocate for my own health, and just keep plugging away at possible underlying causes of my health issues.

I have a full binder of tests that have been done on me over the last 8 years (mostly by my request).  So I'm curious to know which 2 things you feel I should be tested for to rule out because I may have already had them done.  If not, I can ask my doc to test for them.

I know I need to travel to see one of the experts.  It's just so draining after all of the doctors I've been to here and other places (already traveled to AL and NC).  That's why I want to make sure that my trip is worthy because I really don't know if I have a mast cell issue or not.  

Do you know of an expert closer to Ohio?

Thanks so much.

Kate

Hi Kate!

Welcome to the forum!!  


As to doctors in Ohio, Dr. Jonathan Bernstein in Cincinnatti is not an expert in mastocytosis, but his father, Dr. Leonard Bernstein was.  Dr. Leonard has retired, but has given his patients over to his son and so the son has a reference point in his father.  I would recommend that you make an appointment with Dr. Jonathan and have him go over you.  I have written a note to Dr. Jonathan asking him as to his contact information as well as what he requires to see patients.   When he replies to me I will post it here for you Kate.  He'll probably respond to me today or tomorrow.

Now, as to seeing a masto expert, I HIGHLY recommend it.  Of the two, Afrin or Akin I'd go to see Dr. Akin!   He's a high authority in masto and you can't get in better hands than his.  I would continue pursuing your contact with him and ask him if you can set up an appointment with him.  

Now, why would I suggest you see both Bernstein and still go see Akin?   The reason why is that Dr. Bernstein is young and he is not a recognized specialist in mastocytosis.  He's an allergist/immunologist but he's not well versed in masto.  If you happen to have a form of mastocytosis which is more challenging to diagnose, then he won't be able to pursue a diagnosis with you and could even toss your case out the window.  This happens with a lot of us who have more challenging cases and the only way we find help is by going up the ladder to the top.  This is what my case has been, and many others of us here.  Dr. Akin is Deborah's doctor and she really went through the grinder until she was finally able to meet with Dr. Akin.  

Yet, for Dr. Akin to really be able to give you some major improvement, you need a local doctor who is willing to work with Dr. Akin and it's a requirement of the Boston doctors that you have local support.  

So, I very honestly think that if you can get an appointment with both doctors, this would be the ideal situation.  I don't recommend setting an appointment with Dr. Bernstein and then depending upon what he says then go to Dr. Akin.  It's best to set up with both and go to both.  Why?  Well, if Dr. Bernstein does't agree with your going up to Dr. Akin, then if you find that Dr. Bernstein didn't "get it" then you'll not have local doctor support in Bernstein after you see Akin.  It will be difficult for Bernstein to accept you back.  Do you understand the game here?  This is what many of us have found ourselves up against with our local doctors, Kate.  Our local doctors have a hard time swallowing their  pride at time when we've gone up the ladder past them!  Few local doctors do well with this.  Instead, it's best if you just go up that ladder and have both doctors on board at the same time.  You can tell Dr. Bernstein that you've already an appointment to see Dr. Akin and that he's accepted you as a patient and that Dr. Akin would like for you to have that local support and that you've come to him for this reason.  It will not make Dr. Bernstein "lose face" and it will even put him into a good position of working with the tops, and this does a younger doctor good, for they don't feel that they are in a bad position in working with the higher authority then.  

So, if you could work this out this way, Kate, this would really be the ideal situation for you!!!

I'll get back to you with Dr. Bernstein's contact information as soon as he responds to me.  okay?


Lisa

Lisa,

Thank you so much for the information.  I had looked into the Bernstein group, but wasn't sure how skilled they were with mast cells.  I think that would be a good starting point for me in terms of the mast cells.  I will bring my emails from Dr. Akin and Dr. Afrin so that the proper testing can be done.  His Mason office would be an easy drive for me!

I am very appreciative that both Dr. Akin and Dr. Afrin took the time to email me back.  That is very impressive considering neither of them know me or gained anything from me.....they were just being helpful and want people to feel well.  I respect your input, but do want to say that I was very impressed with Dr. Afrin's correspondence with me and I would definitely consider going to see him.

Thanks for your input.  This is a never ending journey, but as my husband and I keep saying, "We are making progress!"

Kate

Hmmm, this is a tricky question Kate, because it's hard to judge a doctor by only an email or two.  I don't know how old he is, but if his father is of retirement age, then he's not fresh out of college.  It's hard to judge.  

I think that if I were in your case, I'd consider writing to him, telling him a little bit about yourself to let him know who you are and what a kind of difficulty your doctors have been having with you, but I wouldn't go into great lengths as to what tests have been run nor would I send the replies of these doctors either.  I would hold on to that information for the consultation itself.  

Remember, Kate, doctors are held accountable by law by what they do with you.  They are not going to seriously consider another doctor's instructions and input until after they have become familiar enough with your case.  As my gyno says, doctors are mini-dictators.  Well, when you look at it from the legal responsibility aspects of it all, and how much they can loose by not going by their own judgement first, you can then appreciate why they can be such sticklers at time.  They can't override their own responsibility for you and so if they don't have convictions of what they are doing with you, they won't do it.  So, it's best to let him meet you first and hear a bit about your case and then in that introductory consultation let him know about your contact with those other doctors and see what his reaction is.  Let this be your guide as to which of those two experts you speak with!  If he leans toward Akin, then let him be your man!

As to those doctors, I do know that Dr. Akin will do this, but I don't know if Dr. Afrin will.  All you can do is ask.  But give it until after you speak with Bernstein.  Tell him, after you've seen his reaction to the names of both men, that you are planning to see Dr So and So, but only name which doctor it is AFTER you've seen what his reaction is to the names of both of them.  His reaction will tell you if he's open to working with that researcher - understand?  

I did something similar with my masto expert, Kate.  Yet, I had told her that Dr. Castells had offered to help me, but to today, my conversations with Dr. Castells are personal and my doctor has never taken advantage to communicate with her.   But you see, I live with a language barrier here for I live in Brazil.  I am American, but I live with my husband and children in Brazil and we speak Portuguese here.  It's a language barrier issue it seems.  Oh well.   I think if I had been with Dr. Metcalfe's support my doctor would have like it better since his name is highly respected and known.  Again, oh well!

So, this is what I would do, Kate.

I hope it helps and don't worry about asking questions, this is what we're here for!!!  

Lisa

I FULLY AGREE WITH YOU KATE!!   DOCTORS ARE MAJOR TRIGGERS FOR ME!!!   Ive put on more shows for my doctors than for almost any other group of people and it's all due to the anxiety of HOW ARE THEY GOING TO DEAL WITH ME??!!!!  

Depending upon the doctor, I will take an antihistamine ahead of time to prevent acting up, especially if the doctor has already seen it and knows what we are working with, however, with a new doctor I won't for the place you WANT to act up is there in your doctor's office so that he can see what you are going through!   However, this can backfire since they can think it's all emotional!   so go figure!

As to Bernstein, after one of the other members here gave us her review of him I felt unsure as to how he's going to deal with you Kate.  Masto was his Dad's forté, but I don't know that the son is like the father.  He may be able to recognize a classic case, but he may not with a harder case.  You can only try him out to see.  Yet, like I said, I really would consider the other two doctors, with Akin winning over Afrin hands down.  

If things don't go as you planned with Bernstein, don't write him off - not yet anyway.  Try this:   Write to Dr. Akin asking him if he will see you.  He should reply to you pretty quickly, but even if he doesn't, what you need to say to Bernstein when you see him on Friday is that you are already talking with Dr. Akin and that you have plans to see him but one of the requirements that Akin's group has is that you have a local doctor to work with Dr. Akin.  Ask Dr. Bernstein if he would be willing to work with Dr. Akin.  If Bernstein shows you any kind of hesitation or negative attitude, then you know that Bernstein is NOT your man.  

Why do I suggest this?  Because of what direction you need to take to find answers.  When we have a case that's not a classic, obvious case, Kate, we patients have no choice but to climb the doctor ladder, each time going higher and higher up.  You've already got a connection to the top, Akin, so you've got your foot in the door and I honestly think you should take full advantage and GO SEE AKIN!  You can't get any better than him and he fully understands and knows MCAD as well as SM!  He is the man responsible for finding proof that IA patients are in truth SM patients and his work is what has reinforced the conviction that MCAD is indeed a real diagnosis.  So, Akin is a believer in MCAD so you don't need nor want to go to Afrin - you've already gone to the top.  However, you need a local doctor for Akin to work with, this is one of their requirements.  

So, the issue here is to find that local support!!!  This is why you're going to Bernstein, to be local support.  If he shows you a bad attitude, it's not a big deal.  You must then find another immunologist/allergist or hematologist who is willing to be that support for Dr. Akin.  And I don't think this should be way too difficult to find and the reason why is because many doctors will shy away from a patient like us when they have the "burden" of having to diagnose us.  However, this is not the case when they have a higher authority who can instruct them as to our care!  Some doctors are more than willing to do this for other doctors.  All of my local doctors are MORE THAN WILLING to take my masto specialist's instructions!  Hey, they've even taken the suggestions of Dr. Castells and the other specialists outside of Brazil who are supporting me for that fact!  My doctors fully recognize the higher authority's superior knowledge and gladly backed down, more than happy to support that higher authority without question!  

So, this is what you want to do if things fall through with Bernstein - you want to see Akin, he's the goal here, and find Akin some local support.  

This is how I would handle it, Kate.  But the decision is yours.  It may be that Bernstein can handle your case afterall.  You'll only know all of this on Friday.  

Let us know how it goes, okay?!

Lisa

I had my appt. today and I will try to just give the facts and leave the emotions out.

I showed Dr. B the list of tests from Akin/Afrin that they had emailed me.  He went through the list and said that many of them were too hard to get done.  He seemed uninterested in their input.

This is what he ordered:
tryptase
complement component c3
complement component c4
CH50
Sed Rate
C-Reactive Protein
Total IgE
Immunocap panel (19 IgE tests)
24 hr. histamine and 5HIAA

Are these tests worthwhile?

I asked him to look at my spots.  He looked at them and said, "Oh, they are just freckles."  Then he scratched them with his stick and said, "Whoa....interesting....you must have dermagraphitism."  I then ran my finger across my stomach to show him that just the slightest touch made it turn beat red immediately.  

Any thoughts?

As I said before, doctors STRESS me out!

Thanks,
Kate