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General Mast Cell Disorders Discussion >> Mast Cell Disorder Doctors >> Dr's Schwartz or Afrin-my thoughts
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Message started by kimtg68 on 06/11/11 at 02:02:40

Title: Dr's Schwartz or Afrin-my thoughts
Post by kimtg68 on 06/11/11 at 02:02:40

I wanted to post my experience and thoughts about deciding which doctor I will go with and then how helpful (or not) the doctor I decide to go with is so others faced with this choice can possible use my experience to help them decide.

I started by emailing each, Dr Schwartz in Richmond, VA and Dr Afrin in Charleston, SC. Within 24 hours I received responses from both doctors. My email to them was identical listing my symptoms, what I've been tested for and ruled out as well as what I have been diagnosed with.

Dr Schwartz responded with: "Have you had tryptase levels measured in samples of serum collected at baseline and shortly after an acute systemic event?  If not, I would recommend this be done to look for mast cell involvement in your condition prior to us deciding whether it would be fruitful for you to see me."

Dr Afrin responded with: "I'm sorry to hear of your illness.

Your spectrum of symptoms is fairly classic for a mast cell disorder of some sort.  It's highly unlikely you have all the diagnoses you mention as problems independent of one another; it's far more likely you have just one problem which is biologically capable of causing all of your symptoms and diagnoses, and the only problem I know of which can explain the entirety of the specific array of symptoms you've listed is mast cell disease.

Probably the easiest way to start, diagnostically speaking, is to have your gastroenterologist or your family physician request the pathologist go back to the small bowel, colon, and rectal biopsies (yes, all of them, except for the gastric biopsy since that one was proven to be infected) and perform additional stains on them to evaluate for mast cell disease, since mast cell disease usually cannot be seen with the standard (hematoxylin and eosin, or H&E) stain used for GI tract biopsies.  Probably the most important stain to be done is CD117, but Giemsa, tryptase, and toluidine blue stains (and perhaps even CD25 and CD2 stains) might be helpful, too.  If the stains show mast cells are present, and if any areas are seen in which there are more than 20 mast cells per high power microscopic field, then that's abnormal (and the pathologist should go on at that point to send out the positive specimen for KIT-D816V mutation testing).  I long ago lost count of the number of patients whose old GI biopsies I've had revisited in this manner to useful diagnostic effect.  Your physicians, especially the pathologist, need to be aware that mast cells are highly "pleomorphic" (shape-changing) and can (and often do) misleadingly appear as lymphocytes, plasma cells, macrophages, histiocytes, or spindle cells on H&E staining.  Given the (very important!) context provided by your clinical history, there is a good chance that significant subsets of the lymphocytes and plasma cells interpreted as "microscopic colitis" and "lymphoplasmacytic infiltrate" in your GI biopsies actually are mast cells, not lymphocytes or plasma cells.

I would not have the gastric biopsies re-examined.  Infection often (normally!) increases mast cell presence in the infected tissue, so it's unknown what normal vs. abnormal numbers of mast cells are in H. pylori-infected gastric tissue.  In other words, if more than 20 mast cells per high power field are found on special staining of the gastric tissue, it still would be unknown whether that's an abnormal number of mast cells given the co-presence of H. pylori.

On the other hand, if H. pylori has been eradicated, a fresh gastric biopsy could be obtained and could be accurately interpreted with respect to increased vs. normal numbers of mast cells, but there's no need to even contemplate such a procedure unless re-processing of the old biopsies comes up all negative.

Alternatively, you could have any of your physicians order a battery of mast cell mediator levels (e.g., serum tryptase, serum chromogranin A, (chilled) plasma histamine, (chilled) plasma prostaglandin D2, (chilled) urinary N-methylhistamine (24-hour collection preferred over a random collection), (chilled) urinary prostaglandin D2, (chilled/stat) plasma heparin) looking for evidence of the disease in the blood or urine, but that might quickly get more expensive than just doing one or more of the additional stains on the old biopsies.

Best of luck.  Your physicians are welcome to call me through my division office (XXX-XXX-XXXX) if I might be able to be of further help to them."

I feel that Afrin's response is more useful. So I'm going to go with him. I will keep you all updated as to how my experience with him turns out.

Kim

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by Riverwn on 06/11/11 at 07:44:43

Kim,
I so appreciate your opinion and the info you shared! Im really liking what Im seeing with Dr Afrin! Im seriously thinking that he may be THE answer for me too! Im in north Florida but I think travel as far as Charleston just might be do-able for me :)
Thankyou so much Hon!!
hugs
Ramona

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by fuchsia1 on 06/11/11 at 09:57:33

Kim, thank you for posting your responses from the mast cell doctors.  I'm afraid I can't be of much help since I am so far undxed with this illness, but trying to figure out if I should pursue it.

But you may have been of help to me.  When the doctor mentioned the gi proceedures and how they may be checked with the different strains for mast cells, I thought to keep this in mind.  I have had both the endoscopy and colonoscopy with biopsy and been dxed with lyphocytic colitis.  

This knowledge of rechecking the boipsies may be of future use to me, so thank you very much.  Good luck in your pursuit to find answers.

Marie

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by juliegee on 06/11/11 at 15:05:42

I'm with Ramona- I think this may be the doc for me too. I've seen him be THAT helpful, kind and generous with everyone I know who's reached out to him for help.

Best of luck & keep us posted-

Julie  

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by Joan on 06/12/11 at 11:13:41

Hi Kim,

Do the instructions for (chilled) etc. go with the test before or after the comma?

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by Godsgal on 06/12/11 at 12:31:04

GO WITH DR. AFRIN!!!!  He is so wonderful.  I saw him a month ago and so did my friend that lives down here near me.  She loves him too.  Her name on here is Goldie something.  Anyway, I love him.  I emailed him yesterday about a question on my meds and he responded with an 8 paragraph email within an hour, on a Saturday.  GREAT doctor.  Wants to help me and he is extremely smart.  And I need that right now.

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by kimtg68 on 06/13/11 at 13:46:59

Joan I believe(if I'm reading it correctly) the comma indicates the end of that listed test so the (chilled) is before the next test. At least that's how I would interperate it. Hope that helps.

Godsgal THANK YOU for sharing your experience with AFrin. That makes me feel a bit more optimistic!

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by goldielove on 06/20/11 at 11:46:55

Yes I saw Dr. Afrin as well and I was so happy Jared told me about him. I thought he was great I just wish I could move too Charlston so he can get me better, I wish more Dr's here in South Florida knew about this disease. ITs frustrating b/c he is so far away. But yu will love him and he told me the same thing about my endoscopy I had, I wish I had known then i could have had them stain it for mast cells but I had it done in OCT and they did not keep the specimin. Let us know how you like him.

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by kimtg68 on 08/05/11 at 09:33:31

So Afrin gives me these wonderful instructions for testing/retesting and I really had to struggle to find a local doc to order these tests for me. I'm SO not kidding when I say struggle! Finally my family doc agrees to do it for me but he only orders the chilled plasma histamine, serum tryptase and the CD117. Two weeks later I call the lab to see if they have results( are you ready for this?) they inform me I need to come in for a blood draw ONLY for the chilled plasma histamine test. They didn't know what the serum tryptase was and the doctor at the lab is lying to me about the CD117. First she says she wants to wait to do the CD117 based on the results of the plasma histamine results. I told her there should be no waiting and all tests need to be done and that the doc actually said the most important of these tests is the CD117. She claims it won't be necessary to do it if I find my answers with the blood test. I continue to argue with her so then she changes her story claiming she needs another form from my doctor to proceed w/ the CD117 for insurance to cover it. Guess what? She had no clue that I had ALREADY called my insurance prior to this order of tests to be sure it was covered and any necessary steps needed!!! HA! caught her off guard. So then she takes another turn in her story and talks of how she can't do the test and I said I already checked that too and I know she has to send it off to Birmingham to be done. She eventually said she was just going to wait for the results from bloood work and hung up. I drove to the lab which is 45 minutes from me and she refused to see me. I'm ticked off and rolling up my sleeves for a fight if she makes it that way. She has NO right to think she can decide to or not to perform tests ordered by a physician! I mean really! There are no obstacles insurance wise. I'm getting mad all over again just posting this!
I'm sharing this to show those out there that getting diagnosed can require some true standing up for your rights. I will succeed in this but will have to go through a bit of a struggle to get it. BUT it will be worth it!!!  I'll keep you posted on how it works out.

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by Kate:Ohio on 08/05/11 at 12:07:18

Kim,

I hear you!!!!  I have had a frustrating day in regards to tests/docs as well!  Keep on it!

Kate

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by kimtg68 on 08/05/11 at 14:10:18

Kate, feel like venting or sharing? I'm all ears.
Kim

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by DeborahW, Founder on 08/05/11 at 17:36:47

I have never heard of anything like this happening at a lab. Why type lab did you go to? Typically one just goes to a lab which has a nurse who draws the blood for the tests on the doctor's order. There is no change of speaking with the people who actually run the tests. Do you have a different lab you could try?

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by kimtg68 on 08/06/11 at 02:32:21

Oh  believe me when I say IF I could go to another lab I most certainly would at this point. I'm shocked and amazed and infuriated that this is happening. This is the lab that holds my biopsy samples taken a year and a half ago. I'm going to talk to my family doctormonday to see if he will step in and help. He's a nice man but is quiet and I'm going to be honest he doesn't seem too aggressive. He's been great to me but let's ME do the leg work, research and pushing. So I'm not sure how much help he will be. I'm prepared to go to the hospital administration or wherever I can get help with this. I do not know the laws however it seems to me this doc legally has overstepped her authority.
I know not everyone has the same religious beliefs but I think God is trying to teach me to speak out and stand up for myself so I will take this lesson and do my best to handle it with a heart like Jesus; firmly yet lovingly. I was all angry before and now with some time to ponder it, I am calmer.

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by Kate:Ohio on 08/07/11 at 10:23:10

Kim,

I am over my stress now, but thanks.  I went and got all my blood drawn yesterday (9 tubes), almost passed out, but they were super nice to me!

Sorry to hear your lab isn't very cooperative.

Kate


Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by kimtg68 on 08/07/11 at 11:53:01

Glad to hear your stress is gone now!
Take care.

Kim

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by Lisa on 09/11/11 at 11:54:48

I am wanting to say here, regarding Dr. Afrin - I too have had a chance to be speaking with Dr. Afrin about some things regarding masto and I´m finding that this doctor is a masto specialist patients can definitely trust!!  He´s young in masto, however, he has definitely caught the masto bug and is absolutely fascinated by it!!  He´s learning and is eager to learn more and  after hearing his story as to how he got into masto, I´m very impressed with his dedication to his patients.  He told me that he got into masto due to a very challenging patient that he was able to finally find the answers for her ilness which nobody was able to find after YEARS of going around in circles.  It was due to his steadfast determination to find the answers for her that he stumbled upon masto and then became so intrigued by this disease that he has become impassioned for it.   This is exactly the same attitude of my own masto specialist and these kinds of doctors are what end up causing them to go on to the point of becoming authorities in the disease!   Dr. Afrin is a hematologist and he fully understands the workings of this disease.  As time goes on, I honestly believe that he is going to become another one of our giants and we desperately need all of these doctors we can get!!

So, although I have not personally met this doctor, I feel very confident in his ability to work with masto patients.   If he is unable to deal with a patient, I have no doubts in his referring patients on to Dr. Akin, Dr. Castells and those doctors who are in higher authority than he!  He fully recognizes their authority as well as his position as a doctor who still has a lot to learn.  Yet, my experience shows that this very attitude that he has is tremendous and as time goes by, his eagerness to learn will turn him into a top notch authority like out others!

So, anything which I may have said previously wondering as to Dr. Afrin´s capability to treat other patients, I now wish to correct in saying that I personally would not hesitate to see him.  He seems like a lovely man and very capable indeed.  Which are the very same qualities I´ve found in speaking with the others!

Lisa

Title: Re: Dr's Schwartz or Afrin-my thoughts
Post by lynda51 on 09/19/11 at 17:46:40

I want to add a short note to this.  I saw Dr. Afrin on Auguast 31, 2011.  I went in for my 4 month check up today with my neurologist.  Wow........she walked into the room and was so excited she could hardly contain herself.  Dr. Afrin had entered a complete explanation of mast cell disorders, comments on every tiny detail of my medical conditions (right down to examining a problem I had with a generic drug and then I was put on a name brand and did fine!).  I can't believe the attention to detail she told me he had explained.  My neuro said she could understand everything he was writing (in our system it is all computerized so every one of my docs get all that  info) and it all made such perfect sense!  As my neuro said, "When most doctors listen to your 18 different complaints, there is no way they all "fit" into one diagnosis. So...that is where the psychological diagnosis comes in handy...haaaa  

Dr. Afrin is not only a great dr., but he is also a researcher and a teacher!  The other amazing thing is that it t hasn't even been three weeks since my appointment with him (nor do I have a formal  diagnosis yet) and all of his findings and correlations of my entire history have been examined and explained to ALL of my specialists.  That's incredible.

My vote is for Dr. Afrin.  He may not be an expert (not sure who decides that) ....but in my book he definitely has the ability, desire and passion to be one!

Oh..another great thing.....My neurologist asked if she could share my case with a large medical facility in Milwaukee, WI.  A neurologist who specializes in autonomic nervous system dysfunction (dysautonomia/POTS, etc) from there holds regular teaching seminars with specialists that are there to help other doctors keep updated and informed in new areas.  Wow.............who knows where this could end up.  This is what we all need!  

My vote is for Dr. Afrin any day!

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