Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Share this:
marezdotes

I am an RN married to a Physician and have SM with [...]

Posted by @marezdotes, Apr 14, 2015

I am an RN married to a Physician and have SM with symptoms. I am having difficulty finding both up to date information and a doctor who is willing to treat me because of the side effects of the drugs. Can you help direct where I can get more information and possible consultation. I read your story with hope and identification.
Mary Siha

Tags: carol-bolton

LS4 likes this
lisas444

Posted by @lisas444, Jun 9, 2015

Mary - i emailed you! We have a large supp group with 94 people in it. I'd love to add you if you're interested! ūüôā

marezdotes

Posted by @marezdotes, Jun 9, 2015

Where is this group located and who is treating these individuals? Mayo Clinic, MN is a far trip to make to see someone there and I am looking for a closer physician to take my case.

lisas444

Posted by @lisas444, Jun 9, 2015

hi Mary. I'm voice texting as I'm driving, so please excuse any choppiness or weird words lol. I'll private message you here in a few minutes when I get home. We have a group with people that have been diagnosed with SM and or MP from all over the US and a few other countries such as Syria Australia with a few in the UK one in the Netherlands. We have ages ranging from toddler 270 18 year olds. Answer villages in between. Just added a 24 year old two days ago. we've got it where the people each stage we have a list of witch doctors or treating SM or empty in their state and we've been grouping people together. two of our people are from Australia just recently added the new lady in and they were able to go to the other person's doctor and already had their first appointment with them. Let me know my email is Lisa s 444 @ yahoo.com

Sent from Yahoo Mail on Android

From:"Sharing Mayo Clinic"
Date:Tue, Jun 9, 2015 at 4:52 PM
Subject:Mary E replied to discussion "I am an RN married to a Physician [...]" [Sharing Mayo Clinic]

lisas444

Posted by @lisas444, Jun 9, 2015

I'm not sure which state you are in, but hopefully we can match you with other people that are in your state and wizard Dr back and read it. Mail seems to be the leading facility, but there are several now throughout the United States that are treating patients with SM and MP. As I stated before we have 94 people in our group now, one of which is one of my daughters docs for the last several years

Sent from Yahoo Mail on Android

From:"Sharing Mayo Clinic"
Date:Tue, Jun 9, 2015 at 4:52 PM
Subject:Mary E replied to discussion "I am an RN married to a Physician [...]" [Sharing Mayo Clinic]

marezdotes

Posted by @marezdotes, Jun 9, 2015

Hi Lisa,I split my time between Central Western PA and Durham, NC.  Duke University is close by when we are in NC, but so far I have had very little luck with referrals there.  My son-in-law is researching UNC hospitals in Chapel Hill, NC and then we will be looking at the Rex hospital system as a possibility for treatment.  The Duke GI physician that I saw was not impressed enough with the CAT scan results to treat me with anything.  I was told to avoid soy in my diet with no future appointment plans to be seen by him again.  When I contacted him to let him know that soy avoidance wasn't helping any, his response was to continue avoiding soy for a few more weeks again with no plan to see me.  My primary doctor sent me to another GI doctor that is currently treating my symptoms caused by the SM, but was honest enough to admit he didn't know what to do to treat the SM itself and recommended a university affiliated Rheumatologist.  I am reluctant to go that route and waste more time, so I'm looking for another physician that has some experience with SM.  I have daily symptoms especially with food ingestion.  I research every possible bit of information I can on SM, its treatment, prognosis, etc.  Thanks for the contact and the support.  Mary

LS4 likes this
lisas444

Posted by @lisas444, Jun 12, 2015

in reading this - i always tend to chuckle when i see docs tell newly diagnosed people with SM/MP - i see yours has said avoid soy.  Do you have a soy allergy? lol  Food has nothing to do with anything.  It's not a disease of the digestive tract per se - but the outside of the bowel and grows and stems off of the mesenteric wall.  I'd gather that your doc doesn't know much about SM/MP and isn't wanting to learn either?  That may be your biggest feat in finding someone that will take on a SM/MP person when it's not a common diseases.  What I keep tending to find all over and with the others in the group and i've said this in there a few times now - it's great to find someone that already knows what SM/MP is and has treated in the past - but more than likely they haven't and probably have just heard of it before, but not seen it.  
Sometimes finding a younger, more eager doc that is interested in taking an SM/MP patient on - that will do their research, make phone calls with people and consult with Mayo docs, that will take the time for trial and error of any meds that you may/may not need, etc. ¬†A few in there now have actually found just that - someone younger that has heard about it on their residencies, etc. and are still eager to take something new on. ¬†That may be what you have to do as well - another thing. ¬†Call call call call and call GI offices ahead of time. ¬†Let them know your diagnosis. ¬†Ask if they've had a patient with SM/MP there before - ask if they will send out an email to the docs in that group and if anyone heard of OR if anyone will take it in. ¬†You'll find the answer is going to be no quite a bit - but you WILL find someone eventually. ¬†Asking the questions and advocating ahead of time and asking if they'll take you on vs. they'll meet you once - take your copay - and then tell you no once you get there. ¬†it's a lot of waste of time and money. ¬†Unfortunately, we've seen it happen over and over and over with several members. ¬†One lady is on her 7th GI consult before a GI would finally take her on - many months of waiting, feeling miserable, and still no one would take her. ¬†I tell pretty much everyone now - if we can't match with someone in your state that i don't have in there yet - making those calls ahead of time and being very proactive will help with your frustration. ¬†GI's don't have to take someone one - they don't have to take you - they treat in an acute situation - but otherwise, up to them whether they want to or not. ¬†ūüôā¬†
Hope some of that helps!  
PS) I'm a paralegal of 27 years and do a lot of med malp. on the doctor/hospital side ūüôā ¬†Sorry¬†about the WOW choppy voice texting while trying to drive the other night from work. ¬†ūüôā¬†¬†Lisa
http://www.caringbridge.org/visit/macschwartz

Please login or become a member to post a comment.

Contact Us · Privacy Policy