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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Disorder Doctors >> Dr. Jonathan Smith - Neurologist - Mayo Clinic, MN http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1361620946 Message started by Lisa on 02/23/13 at 00:02:26

Title: Dr. Jonathan Smith - Neurologist - Mayo Clinic, MN
Post by Lisa on 02/23/13 at 00:02:26

Although I am not Dr. Smith´s patient, I am posting his information here with his permission. Dr. Smith and Dr. Michael Cutrer along with Dr. Butterfield and other doctors recently published an excellent article on: Neurologic symptoms and diagnosis in adults with mast cell disease - Jonathan H. Smith a, Joseph H. Butterﬁeld b, Animesh Pardanani c, Gabriele C. DeLuca a, F. Michael Cutrer

I wrote to them asking for a copy of their article for my doctors here in Brazil. What is usually a quick process ended up extending for several emails of excellent conversation which gave me a very good feel for how Dr. Smith is and it made me feel confident that he is an excellent doctor and extremely interested in masto patients. His area of specialty is that of migraines induced by histamine release. He was extremely intrigued by what he has learned through his participation in this report and is working with these doctors in studying masto patients trying to find more understanding as to the neurological implications of this disease. This report is an excellent report which shows how other neurological conditions can be involved in masto patients.

So, in having said this, I firmly feel that Dr. Smith and his colleagues are neurologists who are very interested in masto patients and that they will do their very best to discover how masto is affecting you neurologically and try to find answers as to how to help the patient!

If you are interested in contacting Dr. Smith, he is more than happy to speak with you through email. If you are interested, please send me a PM and I'll be glad to forward his email and this report he has written. I think you will find it worth your while.

Lisa

Title: Re: Dr. Jonathan Smith - Neurologist - Mayo Clinic, MN
Post by angelloz on 02/25/13 at 10:13:13

Hello Lisa, I Sent you a PM but thought I would try here also. I would love the email from this doctor and any information about the things you spoke of in your post. The more knowledge the better. I seem to have quite a few neurological symptoms. Thank you!
Angelloz

Title: Re: Dr. Jonathan Smith - Neurologist - Mayo Clinic, MN
Post by lynda51 on 02/28/13 at 05:56:42

Hi Angelloz,

If you want to send me a PM, I can give you some information. I just submitted my records to Dr. Smith. I read his autobiography online and liked what I read!

Are you in the Midwest? :)

Lynda
p.s. Didn't mean to butt in Lisa...just hoping I can help ;)

Title: Re: Dr. Jonathan Smith - Neurologist - Mayo Clinic, MN
Post by brigitte on 02/28/13 at 06:57:37

I am sooooo interested in this! Lisa,I would really appreciate it if you could send me Dr. Smith's email!!! And for those who have had contact with him or are going to see him, PLEASE keep me posted!!!! Thanks!!!!

Title: Re: Dr. Jonathan Smith - Neurologist - Mayo Clinic, MN
Post by Lisa on 03/01/13 at 05:51:42

Oh, my friends, PLEASE forgive my absence!! I'm just SWAMPED with things and am without the internet so that I can access when it is convenient that things are getting backed up!! I'm trying to get the time to send you all this article, so I'm hoping to do it tomorrow by the latest!! So please be patient, I've not forgotten that I promised to send this article to you. Perhaps I can even get it off quickly now, but if it doesn't reach you by tomorrow, let me know again please!! Sorry!!!!

Lisa
:-[

Title: Re: Dr. Jonathan Smith - Neurologist - Mayo Clinic, MN
Post by lynda51 on 03/07/13 at 16:45:06

I just wanted to update those who are interested in getting an appointment with Dr. Smith.

INITIALLY, I submitted my records and did receive a letter denying my request. Although disappointed, I understood. His area of specialty is histamine release and headaches. I think if your need for seeing him is in this area, he is more than open to seeing mast cell patients. (My interest in seeing him was to try and determine if I really have seizures or if it is POTS. I want to stop my seizure meds if I can!)

THEN today, I received a call and his office agreed to set up an appointment for me. :) I will keep you posted.

He is booked out 2 months.

Title: Re: Dr. Jonathan Smith - Neurologist - Mayo Clinic, MN
Post by Lisa on 03/08/13 at 15:02:09

Lynda, I have to wonder if it was he, himself who wrote to you the denial or if it wasn´t the nurse screening for patients! From his comments to me, he said he was interested in seeing masto patients as regard to their neurological symptoms but that his specialty was migraines. Since so many of us have headache issues, I felt that this was not an issue for seeing him. However, his nurse may not know this and she may be who screened you out instead. A nurse or assistant wouldn´t know the difference and would therefore presume that since you were´t wanting to see him specifically for migraines that this was what was caused you to be rejected. I´m glad you insisted with him and this is what I would encourage others to do for in looking at this article of his, they deal with patients who are outside of his area of study and this is why I felt that he is open to seeing other masto patients even though they don´t quite fit into the migraine profile.

Lisa

Title: Re: Dr. Jonathan Smith - Neurologist - Mayo Clinic, MN
Post by lynda51 on 03/09/13 at 15:12:02

I have to agree with you Lisa. When I called back after getting the letter denying my request, I spoke in depth with one of the 25 receptionists in the neurology dept. I am not sure if ALL of them are 'trained' like her, but she asked some very pertinent questions and took an in depth account of what and why I felt he would be a good doctor for me to see. I also asked the question if my diagnosis of MCAS vs. SM made a difference. So...that's obviously not the case either! :)

The receptionist did say she would speak to the doctor himself (and not go through other channels) about what we had discussed. :) I think you are absolutely correct in your interpretation of what happened. I am really looking forward to the appointment and will arrive in hand with as much information as I can!

I may not have gone back to question the decision without your encouragement. ;) Sometimes even those of us who consider ourselves persistent want to give up. So thank you!

Title: Re: Dr. Jonathan Smith - Neurologist - Mayo Clinic, MN
Post by Lisa on 03/12/13 at 14:34:47

You know what Lynda, doctors are people JUST LIKE US!! Only they got a whole heck of a bigger burden than we carry, even with our illness!!! If they sneeze, everything they do is questioned and judged and they have to keep a certain posture in order to "make everybody happy" and oh that´s so unfair!!! They aren´t allowed to be human or have off days or go through divorce and loss and their world crumbling down about their ears! We, on the other hand, are so focused on our suffering that we don´t notice even the slightest problems with our doctors. Who cares for the doctor when he´s sick or hurting? I've been teaching some doctors English lately and one of my doctors is known for being really tough, like a man. She's a surgeon and so she's got to be cold and calculating and must keep her feelings and thoughts clamped down tight in order to do what she does. In my classes we tend to talk about things having to do with everyday life and so she's opened up a bit with me. She's been my doctor for the past 6 years. In all these years of close contact I hadn't the slightest clue that she was absolutely devastated to find that one of her parents has Altzheimers and that she's slowly watching this loved one disappear and die and it's tearing her apart!!! You would NEVER know this!!!

So very often we hold such high expectations for our doctors and forget that they are just as human as we are with just as many needs and difficulties. One of my doctors apologized to me a few months ago when he sat back down after welcoming me into his office. He winced as he sat down and I said, WHAT IS WRONG? He was embarrassed that he had let the look of pain on his face slip out from behind the mask of well-being. He'd had hemerrhoid surgery and was still recovering from it, poor man!!!

Our doctors have bad days, they have problems, they are as human and faulty as we are! They also have their areas of interest and specialty and since they are required to be quase perfect and quase gods in their jobs, many would prefer not to work with a patient who goes outside of his comfort zone, not in this day and age of vending machine lawsuits where they come in packaged deals almost! This is why you will get resistance from some doctors, they don't want to get into a bad situation if they don't know the disease.

Yet, Dr. Smith seems genuinely interested from my conversations with him. I don't believe I've misjudged him, however, I don't know him personally and don't know how much he understands about masto, but what I do know is that his youth is a plus feature for he's INTERESTED and this can make ALL the difference for patients like us. I'm so proud of you for having the COURAGE to try yet one more doctor! It takes a great deal of courage and it is my sincere hope and prayer that Dr. Smith will be all that you are praying for in a neurologist!!!

Let me know how it goes!! You are in my prayers!

Hugs!

Lisa