going away to college and 2 sets of doctors (long)

[disfan07]

My doctors and I are in the process of discussing this but I wanted some outside opinions as well....

I have 7 doctors all at Cedars-Sinai hospital in Beverly Hills.

I am in the process of finding out where I am going to be transferring to in the fall. RIght now we know that I got admitted in UC Santa Cruz (6 hour drive/1 hour plane ride) adn we are waiting for UC Santa barbara (2 1/2 hour drive) and UCLA (10-15 minutes away). Our bets are going with UCSB as I don't have much hope i dont think of gettign into UCLA.

I've been seeing my doctors for various time periods:
Derm.- 10 months (see every 6-8 weeks--eczema)
Pulmonologist- 10 months (see every 8 weeks or as needed--asthma)
Cardiologist- 7 months (see every 2 months--Inappropriate Sinus Tachycardia)
Internist- 2 months (as needed....but is in charge of my records...discusses everythign with my other drs.)
Allergist/Immunologist- 5 months (As needed--Food/drug/chemical allergies adn Selective IgA deficiency)
Gynecologist- 2 months (every 6 months--PCOS)
Neurologist- first appointment was today. (Pineal cyst (will require surgery) and possible Myasthenia gravis)

No matter where I end up I plan on keeping my doctors at cedars as my main doctors but unless I'm at UCLA, They will be almost 3 hours away.

The one doctors I do not need to get another of is my dermatologist (my dermatologist will right a standing order for labs needed adn will do everythign over the phone adn email)

I have to get another pulmonologist becasue my asthma is so severe adn that is what i keep gettign hospitalized with.
I have to get another cardiologist becasue I have to have my meds monitored and I get stress tests every 2 months (and also becasue my heart is impacted when I am hospitalized)
Obviously I need another internist for the usual things (sinus infections mainly)
Neurologist will depend on the diagnosis.

The 2 we are not sure about are the gynecologist and teh allergist. We figure that if I am comign home every 6 months, I can see my gyn when I am home adn anything else that migth pop up inbetween I can use my internist for and my allergist is questionable. I have severe allegies but I dont see my allergist on a regular basis but she is there when I need her (she is also an infectious disease dr. adn immunologist adn she is one of teh best in the country so I worry abotu seeign another one)

My situation is unique because I dont see all these doctors for different aspects of one disease or disorder. I see each doctor for a different problem. So I am dealing with 7 different medical problems

My question is....how do you deal with 2 sets of doctors? I wont give up my drs. at cedars especially since I will be home during breaks and summers but I have to have these drs. where I am as well.

My doctors are discussing it with each other but even they are kind of stumped as to how to deal with the situation because it's unique in teh way that I dont present with normal symptoms for any of my problems. They know what to expect adn what to look for when I am sick adn they trust me to actual accurately diagnose what is wrong on my own and teh majority of teh time I am exactly right adn I knwo what teh treatment is adn they listen to me.

has anyone had to deal with this before? How do you get the doctors to colaborate if necessary? All of my doctors at ceadrs are the ones who have diagnosed me adn have made progress in my treatments. I'm concerend about any possible interuptions in treatment or having trouble finding doctors who dont agree with the diagnosis/treatment, etc. We've made so much progress in teh past 8 months...it scares me to think of the possibility of ruingin any of that because of new doctors.

 

[Sleepy]

If even your own docs, discussing this as a whole, can't figure out how to get you treatment at a new location, I am not sure what we can do to help. Changing docs is always a problem. You have to go over the entire history, letting them know what has worked and what has not. They will eventually catch on. Ask current docs for the names of recommended docs in new location. Start with them first. It is trial and error when changing docs. Since you seem to have a special case, just remember how you ended up with your current docs and what you had to do to get them to understand your body as they do. You will do that with new docs.

Problem is if you want to continue using old docs, you will have to figure out a way to keep old docs informed of new developments. So, basically you will be doing with the old docs the same thing you are about to do with the new ones. Understand? Good luck.

 

[honugirl]

Good luck dealing with 2 sets of docs. Especially specialists! They tend to have a bit of an ego and are not fond of sharing/working together. I have doctors in 4 different states (Texas, Utah, California, and Washington State) due to my rare condition. I've gotten around having a second set of doctors by having written crisis instructions with me at all times and emergency contact info. If you are going to employ a second set of doctors, I think it is wise to ask your current doc for a recommendation. They are more likely to be able to work together and share info.

I'm going to guess you are on the younger side since you are going away to college? Have any of your doctors thought of trying to put the puzzle pieces together and attempt to come up with one single diagnosis for you? When I was younger (early 20's) my doctors had given me just about every diagnosis in the book... IBS, ADD, PCOS, Migraine, Asthma, allergies, etc. I won't go into the whole list here, but I figured someone my age should not have that many things wrong with them, turns out, I was right. I was finally diagnosed with Cushing's Disease. I didn't have a billion different diseases/issues, I had 1 issue that was causing all the rest. Just something to think about...

 

[golfgal]

Since they are all at the same clinic, can't they coordinate their schedules so you can come in one day and see everyone you need to see? It looks like you see everyone every 2 months or 5 months, if you can see everyone on a 2 or 6 month schedule see the 2 month dr and every 3rd visit add the 6 month doctors. The 6 hour car ride would be a pain but for one person to fly back and forth it might not be too expensive and you could rack up the FF miles to help offset the costs. I know here, flying round trip to Chicago is about the same distance and you can always get a flight for about $50/round trip.

I guess I don't see the problem, you do what you have to do and figure out a way to make it work. Plan your college schedule so you have a one day of the week free so you can plan your appointments for that day of the week and schedule all your appointments for the year now. Get the school calendar so you can plan as many around school breaks as possible.

If you are only 3 hours away, you get up at 6, get to the clinic by 9, see everyone and you can be back at school by 9 PM.

 

[disfan07]

Problem is, they are not in the same clinic. They are all affiliated with the same hospital but only my derm and my internist are in the same practice.

That comes with, my derm adn my gyn are also the only ones who work 5 days a week. The rest of them work scattered schedules.

What I was really asking was just if anyone here had dealt with two different sets of doctors in two places and how it worked. The rest was just background (just a lot of it).

I'm hoping to be able to just deal with having to get a pulm. adn cardio. whereever i am. Those two I have to have because if I am hospitalized, obviuosly my docs. dont have privilages where I will be so I need to have teh same doc everytime.

Luckily, my doctors at cedars do not have big egos. They work very very well with other docs and are completely open to suggestions. My concern is not as much with them as it is to anyone who I might start seeing elsewhere. I think it has to do with the fact that they are all women between 30 adn 40. They seem to be the least egotistical of any doctors ive ever had.

honugrl; Ive been tested for eveyrthign under teh sun. The neurologist is retesting my TSH levels adn and rheumatological things but I dont think there is a single test that has been left unturned unfortuantely.

The whole thing has just been working so well for the past 10 months. We just did not think of the long term....we wanted to get teh best doctors and to get answers ASAP which is what we did...now we just have to deal with all of this. It's just really stressful which is the main problem.

 

[Boxley]

a. So your doctors expect you to diagnose what is wrong with you? Something like that doesn't seem kosher. The internet is a veritable place for knowledge but some things do require better research that a doctor needs to look into, not the patient.

b. Why not find some doctors nearby, you just have to have a complete history as well as other things. Also, why do you keep going to see the doctor for some things that are pretty mild, ie eczema? There are some allergy shots that don't require constant check ins.

c. I agree with some post to keep the schedules all in one day so that it not only doesn't take you away from your studies but also can help the doctors as well.

d. I know that spelling and grammar problems occur often, but your posts are actually kind of hard to understand. I am sure a college student sometimes overlooks those things but at least be somewhat mindful of your errors.

 

[golfgal]

I am sure if you approach the dr's with scheduling your appointments out for a year they will accommodate you quite easily.

 

[Scurvy]

I am sure if you approach the dr's with scheduling your appointments out for a year they will accommodate you quite easily.

I agree. I think you definitely should get another primary care doctor when you're away at school. However, I would really try to keep going to the same specialists if at all possible if I were in your situation. I would think they would try to work with you to make that as easy as possible. I'd avoid dealing with two teams of doctors if I could manage it - my dad is dealing with two teams for his cancer right now and it's awful. It's hard enough to coordinate everyone on one team. It's like pulling teeth to get the two teams to work together. We spend half our time waiting for them to communicate with each other.

I'm not a doctor, but I play one on the Dis. This medical advice is worth exactly what you paid for it, but I know how frustrating it can be to deal with mystery symptoms and a couple of things stood out to me about your post:

The Inappropriate Sinus Tachycardia may not continue to be an issue for you forever. It's surprisingly common in high school aged girls and many of them outgrow it during their college years. I did. Maybe you will, as well.

The other thing I noticed is that just about everything you listed is common in people with Lupus. I see that your neurologist is retesting you for some rheumatic things. I assume you've been tested for Lupus before, but if they aren't rerunning that test now it might be worth asking them to. It's one of those things that can be hard to test for, since your levels can vary so much at different times. Depending on the form someone has, it can be very easy to manage and a diagnosis of Lupus can almost be a relief to someone who has a laundry list of crazy symptoms. It's nice to be able to manage one thing instead of ten separate things!

Whatever you decide, I hope they get all this figured out soon. And good luck wherever you end up going for school.

 

[princessmom29]

I agree. I think you definitely should get another primary care doctor when you're away at school. However, I would really try to keep going to the same specialists if at all possible if I were in your situation. I would think they would try to work with you to make that as easy as possible. I'd avoid dealing with two teams of doctors if I could manage it - my dad is dealing with two teams for his cancer right now and it's awful. It's hard enough to coordinate everyone on one team. It's like pulling teeth to get the two teams to work together. We spend half our time waiting for them to communicate with each other.

I'm not a doctor, but I play one on the Dis. This medical advice is worth exactly what you paid for it, but I know how frustrating it can be to deal with mystery symptoms and a couple of things stood out to me about your post:

The Inappropriate Sinus Tachycardia may not continue to be an issue for you forever. It's surprisingly common in high school aged girls and many of them outgrow it during their college years. I did. Maybe you will, as well.

The other thing I noticed is that just about everything you listed is common in people with Lupus. I see that your neurologist is retesting you for some rheumatic things. I assume you've been tested for Lupus before, but if they aren't rerunning that test now it might be worth asking them to. It's one of those things that can be hard to test for, since your levels can vary so much at different times. Depending on the form someone has, it can be very easy to manage and a diagnosis of Lupus can almost be a relief to someone who has a laundry list of crazy symptoms. It's nice to be able to manage one thing instead of ten separate things!

Whatever you decide, I hope they get all this figured out soon. And good luck wherever you end up going for school.

Lupus was my first thought as well. The test for it does not show up positive in everyone that actually has the disease, as you mentioned. It is something to consider.

 

[tictac]

I completely understand you when it comes to not being textbook diagnosis that has been me for most of my life. This is why it freaks me out to move or travel out of state.
My suggestions would be to ask the current doctors for recommendations or Google doctors in the area you will be moving to. Sometimes people will post reviews and opinions about the doctor or clinic. I have found it helpful sometimes.
Once you find your new doctor sign a release so they will be able to obtain your medical record. This will help them know your history (problems and what has been done to correct it )
Make an initial appointment to check things out. Talk to the new doc give them a brief history and see if they will work you if not try another one. You need someone you are comfortable with in BOTH places.
In the mean time lots of I know what it is like freaking out about medical stuff.

 

[disfan07]

Lupus was my first thought as well. The test for it does not show up positive in everyone that actually has the disease, as you mentioned. It is something to consider.

This was everyones first thought. I have been tested for lupus 4 times in the past 5 years. This was teh 5th time they were testing me. I'll find out next week but I dont expect it to come back as being positive.

a. So your doctors expect you to diagnose what is wrong with you? Something like that doesn't seem kosher. The internet is a veritable place for knowledge but some things do require better research that a doctor needs to look into, not the patient.

Huh?? I never said that my doctors expect me to diagnose what is wrong with me. I am ABLE to diagnose what is wrong (such as sinus infections, bronchitis, asthma attacks, IST flare, etc) because it happens so often. They don't EXPECT me to do any of that. They just know that I know my body so well that if I go in for an appointment and say I think this and this is what's wrong, they check for that first because I am usually right. I am extremely involved in my care. I have to be. I can speak to my doctors on their level (pertaining to medical speak). I am extremely knowledgeable about what is wrong and know that if i say that I think something is wrong, they are amazing about listening to exactly what I am saying and they don't dismiss anything.

Why not find some doctors nearby, you just have to have a complete history as well as other things. Also, why do you keep going to see the doctor for some things that are pretty mild, ie eczema? There are some allergy shots that don't require constant check ins.

Because while eczema sounds mild, my case is not even close to being mild. My case is very extreme. I am on methotrexate (an immunosuppresent) to even keep it slightly under control. I still have flares even on the immunosuppresents. When I was at Hopkins, they had all said it was the worst case of eczema they had seen. It doesn't respond to anything besides steroids and immunosuppresents so I have to go to my dermatologist every 2 months for follow-ups.

I don't get allergy shots. I can't. I have too many different allergies (ie food, chemical and drug) for them to even consider allergy shots. I don't see my allergist on a regular basis...she's just there when I need her.

That's the attitude that is a problem with a lot of doctors. They hear asthma, eczema and allergies and assume it's an easy case. All my doctors have told me that I am one of the more difficult cases because nothing is mild. Everything is extreme and each interferes with the treatment of something else.

Two of my allergies are not extremely common (parabens and lanolin). And those allergies interfere with topical eczema treatments because those chemicals are in everything. My asthma is so severe that even on the highest dose of symbicort, singulair and prednisone I still have regular asthma attacks and hospitalizations. The severity of my asthma interferes with the IST treatment because they can't use beta-blockers. My doctor is using a drug that has only ever been used in case studies of IST before but it is the last resort for us because we cannot have me staying at a resting heart rate between 180 and 200 for hours at a time anymore

The Inappropriate Sinus Tachycardia may not continue to be an issue for you forever. It's surprisingly common in high school aged girls and many of them outgrow it during their college years. I did. Maybe you will, as well.

That's what my cardiologist was hoping at first, but she is not as hopeful anymore. We know that it is definitely an electrical problem with my heart because she did an EP study to diagnose it and she found the abnormal area but she could not do an ablation like she planned because the abnormal area was too close to the sinus node and she would have had to put in a pacemaker because it would have destroyed the sinus node. So we are waiting either until I am 25 or if this medication stops working to have another EP study and see what is going on and she thinks that if it does not go away or get better within the next 5 years we might have to look into other options.....this is what I mean by no matter how "simple" a diagnosis sounds, it's never that simple with me...I like to make everything more fun

I realize that in my OP i worded it wrong. I never should have said I was looking for "opinions". I was really looking more for any personal experiences about dealing with 2 sets of doctors and if it did or did not work for you.

 

[The Mystery Machine]

I realize that in my OP i worded it wrong. I never should have said I was looking for "opinions". I was really looking more for any personal experiences about dealing with 2 sets of doctors and if it did or did not work for you.

My dd is in college. It will depend on your insurance. She can see anyone within her network as needed. Now the question of will they see here is another matter.

However I would suggest you keep your primary doctor. That is the thing you cannot change. Your primay doctor can have leverage, call in scripts, etc...at least with our insurance.

I am sure UCLA health center doctors can give you a scripts for common ailments while you are at school.

It is all up to your insurance really what you can and cannot do.

And if you excema is that bad, I would NOT change that either. How are you able to go to school with excema that bad? It sounds awful! Where is your excema? All over your body?

 

[Sleepy]

And if you excema is that bad, I would NOT change that either. How are you able to go to school with excema that bad? It sounds awful! Where is your excema? All over your body?

My father has it all over his body. He also takes methotrexate and has for many years. The spots are on his head, back, legs, chest...you name it. Basically, he is a mess. This was the only med that would give him relief. It itches very bad. He does not use a specialist. His primary handles his case. He just has to keep an eye on the liver. I can see why it would be possible for the OP to go away to college as long as she makes sure she follows up with a doctor for the liver part of it.