Monday, December 10, 2012

Keeping track

Susan Skoney

I need to vent before total exhaustion sends me to my recliner for a nap. Are you as tired of going to the doctor as I am? In fact, I could get sick thinking about it.

I spend days out of each month and hours out of those days going to different doctors trying to manage the myriad of symptoms multiple sclerosis brings. I have a neurologist, a urologist, a gynecologist, an ophthalmologist, a chiropractor, a dentist, a psychotherapist, a physical therapist, an infusion specialist and, of course, the obligatory primary care physician.

One would assume that with 11 healthcare providers my medical care would be the least of my worries. Actually, it is one of my biggest sources of anxiety. And that’s because I don’t really know which of these providers is overseeing my care. OK, I’ll give my dentist a pass. But a few days ago I arrived at the lab to have blood drawn with two scripts in my hand—one from my primary care physician, and the other from my neurologist. The tech laughed out loud and explained she would have to draw at least 20 tubes, which was way over the limit for one patient for one day. The stricken look on my face must have touched her on some level. Tears welled in my eyes, and  rather than dismissing me, the tech called me back to her office, identified all the duplicate tests  and managed to reduce the number of tubes to a manageable amount. She assured me the results would be sent to both providers, then shook her head and said, “If only they would talk to each other.”

Communication is definitely an important concept when trying to manage your health care under normal circumstances, but for those of us with chronic problems it is vital. I have discovered that peripheral providers, like the lab techs or a pharmacist can be great facilitators of that elusive communication. My pharmacist is like a guard dog. He has picked up on possibly serious drug interactions that could happen by having so many doctors prescribing different drugs. Recently, the urologist prescribed a drug and my pharmacist would not fill it because of my allergy to sulfa. (A component of this particular medication was triggering allergic reactions in people sensitive to sulfa.) Well, I was so relieved my pharmacist was on the case! 

I don’t know about you, but I’m exhausted trying to keep it all straight. In the end, I’m the one who is really in charge of my medical treatment, I guess. In the meantime I’m headed to the recliner. I have an appointment in an hour.


Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

13 comments:

  1. I can most definitely relate! Good work from your pharmacist, by the way. I'm allergic to sulfa as well, but I do depend on the expertise of medical professionals to catch that. I honestly thought about counting the number of visits I had this year. I know it runs somewhere around 150-200. I appreciate your honesty, and hope that the next year finds some encouraging moments regarding your health.

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  2. I want to know in this day and age why it is so hard for our doctors to communicate...It makes me crazy, angry and grumpy when my doctors say it can't be done or more like won't be done...Just one year into this and the doctors make me ill, so ill that when my laser hair removal person wanted a simple script of EMLA cream for my comfort and my doctor referred me to a dermatologist for yet another appt I blew my stack...I flipped out because it was in my opinion a stupid and rediculous waste of my time and I waste alot of time in docs offices for way more important stuff than a silly common script..

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  3. My Father-in-Law says he remembers when he would go to the doctor for everything that was aleing (sp) him at that particular moment. It infuriates him to have to go to 5 doctors to "MAYBE" get a handle on what is really going on with him.

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  4. One of the many good things about the Mayo Clinic is that this does not happen. I go there once every few years and get all the needed work to manage the M.S. In a few days. I start with the neuro. Then appt.s are made with others over the next few days. When I show up they already know what is going on. Rochester Mn. Is wonderful. Hotels in all budget ranges with Mayo shuttles running all day. The clinic is an art/cultural museum so waiting between appts. Is very pleasant. I call it the sick persons Dismey World. My g.p. Sent me and helps with their reccomendations.
    P.

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  5. One of the many good things about the Mayo Clinic is that this does not happen. I go there once every few years and get all the needed work to manage the M.S. In a few days. I start with the neuro. Then appt.s are made with others over the next few days. When I show up they already know what is going on. Rochester Mn. Is wonderful. Hotels in all budget ranges with Mayo shuttles running all day. The clinic is an art/cultural museum so waiting between appts. Is very pleasant. I call it the sick persons Dismey World. My g.p. Sent me and helps with their reccomendations.
    P.

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  6. Hi Susan, Nice article, I am relapsing progressive now and have been on disability for two years. I see my neurologist and GP once a year unless there is something critical happening and even then there is really little that can be done. I was diagnosed in 1995 at the age of thirty and spent ten years in human subjects research at UCLA. I have had the same GP and neurologist from day one. I wish I could go to someone to treat my MS and the myriad of symptoms but as my neurologist tells me, "Your in the dwindals there's nothing more that we can do." I would like to have the problem of too many doctors to treat the oncoming progressions but there are non.

    I think sometimes we should be thankful that symptoms that are causing you problems can be treated. Whether that be with medication or physical therapy. For me I do physical therapy once a week and fight to keep walking, as for the rest I'm on God's good humor.

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  7. 58 married woman, diag about 5 years ago. Have had an amazing internist the whole family (in-laws) go to, his email is extraordinary. The problems I've had havs been with the first d.o. neuro referred by my primary, then the 2nd who almost had Ampyra taken away from me. So, now, no neuro. I see my md in Jan, 2x/year and will see if I need to see a neuro. One thing all of us should do is give a list of meds you take to your spouse or someone, in case of emergency. We all have to be our own advocate. That is clear from your blog, thank-you.

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  8. I feel the exact same way! I finally decided that I would have to try to coordinate the information myself and do a great deal of research. Another thing I decided I needed was a proverbial "home base" and that would be my primary care doctor, who is very good with chronic illnesses. We often have appointments just to discuss the other dr. appts and meds that were prescribed. It helps to have someone who is watching over it all and understands all of the terms. That being said, I still just wish I could go to her for everything instead of all of these appointments that drive me crazy. I don't know if this happens to you, but I will have an appointment and then have to cancel at the last minute because I can't move or I'm in pain. Then, because they're mostly specialists, it takes 2 months to get back in to see them. It's very frustrating!

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  9. I'm so sorry you must go to so many doctors in order to take care of so many issues. It must be difficult. I wouldn't even go to the doctor except they want to make an appointment every three months which I usually cancel that one and go every six months. Twice a year is enough to see my neurologist. I have secondary progressive MS and it took my 6th or 7th neurologist that actually said,
    "No, you don't need the MS drugs because none of the ABC drugs are approved by the FDA for secondary progressive disease. I'm sure because of the money factor they'll be one out there soon but I'm a little bit leary when so many doctors down here in Tx push drugs that did not help me. I try not to go to the doctor except if I get a flu, etc or break something ofcourse. The mayo clinic is up in Minn. I believe where lots of research is being done for MS because there are many folks up there with MS but not so many here in south Texas. I've had MS for 20 yrs and for years every time I went my doctor would ask me to walk six steps...
    then say, "Yeah, you're getting worse. See you in six months. Or even better yet, my very first time I was diagnosed and saw my very FIRST
    neurologist, do you know what he said, as I was walking out the door?
    "Don't call me if you have any patches of numbness!" Bye... Can you believe that? I don't think there's much for me to do but keep moving.
    The other ladies right about the physical therapy and keep walking even though I'm getting slower and slower.

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  10. I JUST had these thoughts last week when i got ANOTHER prescription and ANOTHER doctor. I'm up to 7 meds now, and I always joke to my husband to make sure he tells the ER which ones i take when i end up there in a coma. I guess that's not very funny.

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  11. Sad how we all relate to the same issue. Iv'e seen so many differnt doctors in the past twelve years. Test after test after test. Medication trials that mostly I react badly to. My PCP is the gatekeeper. Thank goodness. She knows my history, and has witnessed all the changes over the years. My frustration is that each doctor has an opinion and no two are alike. It makes me feel crazy and I don't want to hear one more opinion. Some say oh that is MS related, others say oh I don't think it's MS lets do some more testing. Yikes...all I know is how I feel and report to my PCP if I have new symptoms or decompencation. Frustrating to say the least. They say stress makes symptms worse, yet the doctors stress me out more than anything. I know we are each different but there must be a standard of care protocol. And if doctors don't know something they should not be allowed to blame us for their lack of knowledge. Good luck to us all.

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  12. Sad how we all relate to the same issue. Iv'e seen so many differnt doctors in the past twelve years. Test after test after test. Medication trials that mostly I react badly to. My PCP is the gatekeeper. Thank goodness. She knows my history, and has witnessed all the changes over the years. My frustration is that each doctor has an opinion and no two are alike. It makes me feel crazy and I don't want to hear one more opinion. Some say oh that is MS related, others say oh I don't think it's MS lets do some more testing. Yikes...all I know is how I feel and report to my PCP if I have new symptoms or decompencation. Frustrating to say the least. They say stress makes symptms worse, yet the doctors stress me out more than anything. I know we are each different but there must be a standard of care protocol. And if doctors don't know something they should not be allowed to blame us for their lack of knowledge. Good luck to us all.

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  13. Has anyone tried patients like me? It is a great website that helps you centralize your health issues and you can print a report to give to your doctor that includes all of your medications, symptoms, treatments, etc... You can invite your healthcare team to subscribe to your page to give them access to all of your information and updates as well (not that they really have time to do that part) but you never know. You can also share updates with your family members to help them keep track of your medications and anything else that may be of importance to them. We are our own advocates and it sucks not to be able to depend on your healthcare provider to at least read your chart before they make you repeat what you just told the medical assistant. Also, anytime I get a prescription, I go to drugs.com and type in all of my medications to check for interactions. That is another great resource for patients like us. Here is my profile page at Patients Like Me: http://www.patientslikeme.com/profile.

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