How Do You Relate This Stuff To Other Doctors----i.e-->pcp, Gynocologist, Ect.

[Maxine]

Yesterday I went to my gynocologist for my check up. I skipped a year, as I just didn't think of it due to being overwhelmed with other doctors appts., tests, ect. All pap tests have come out good in the past--(knock on wood). I told the doctor this, and she said if pap tests came out good every year, that I could wait every three years to have this done. She said she would send me an order for a mammo gram yearly.

She had a student doctor there that was very good, and understanding. However, I don't know if it's necessary to tell them about my medical history. I told her what I was diagnosed with, and she was great. The nurse that filled out the clinical information sheet looked at me like I was lying about all of it.

The nurse must have filled the doctor in, as she came into the room looking like a deer looking at the headlights. REALLY BIZARRE. The reason I told the student doc my medical history is because she asked if I had any medical problems. I was brief, and only took about 5 minutes to summarize the whole mess. Same thing with the nurse, and I answered all her questions with brief answers.

I asked the doctor if I should have my hormones tested because I have been missing periods, and then they start up again. I'm 50 years old, and asked about menopause. I said my POTS symptoms have been worse near my cycle, and I didn't have this problem before. She cut me off and said it wasn't necessary, and that my hormones will by "up and down", and that she wouldn't do it unless she was going to put me on hormone therapy. she said this wasn't needed for me, so no need to do any blood work.

I had told the nurse that I didn't know if there was a history of ovarian cancer because we don't know where my mother's cancer started. Her whole abdomen was infiltrated----(it was everywhere), and since the idiot docs she had at the time didn't know about her cancer until 48 hours before she died, we don't know where the cancer began. I have no idea why the doctor didn't seem concerned about this at all. There was no mention of any type of screening tests for ovarian cancer. I had to bring up the mammogram, and she wrote up an order for this. this was weird, as she was the one who said she would send me an order for this every year, but somehow forgot that I need one done now, as I skipped a year.

I thought the doctor's nature was apathetic......and when I left I felt the appointment was incomplete. With my POTS getting worse during my cycle, I think I should have had my hormone levels tested. I felt like I was at was at a clinic that practices miminal medicine, and that perhaps the doctors get credit for NOT ordering necessary testing. It might be time to move on-------------------ya think?

I remember one nurse practioner that worked for an OB/GYN who was very good. I went to them years ago, but the doctor retired and went into teaching. He was really nice also. He would have his patients come into his office and explain everything after we got dressed. He was a kindly gentleman. If it wasn't for that nurse practioner, my hashemoto's thyroid disease would have not been caught. She looked at my chart---(wow, imagine that!), and she ordered blood work due to a family history of thyroid disease. Mine was caught early. I was very lucky to have such a great doctor back then---Mid 90s, as my hashemoto's was diagnosed in 1995.

Question; do you give your medical history to all MDs? I would think this is necessary, but this doc seem annoyed.

Also, is it normal to have crampy pain--(and a little stabbing pain) after a pap smear. I don't usually get this, not that I remember anyway.

I'm telling you-----I get so disgusted.

Maxine :0)

[firewatcher]

I know how you feel. I have had to see all kinds of "regular" docs during the extended process of my diagnosis. My OB-GYN was the one who was most helpful, the second was my sleep doc. At first I would gush to all the doctors in hopes of finding some missing piece of the puzzle from some outside thinking medical knowledge. Now, when I get those questions I just say:" do you want ONLY the relevant medical conditions that pertain to why I'm seeing you?" Some say yes, others like the two above, say "gimme the works!" My OB/GYN also caught my thyroid issues first. I think many doctors are afraid of the "zebra patients" because either we're "crazy" or if we are truly medical zebras (like all of us here!) there is not much that they can do and they don't know much if anything about dysautonomia, much less chiari or EDS.

[Poohbear]

Sorry you had a bad experience.

Obviously I can only speak from my own personal experience. To answer your question, Yes, I do inform all of my Dr's of my Diagnosis. I have a LONG list of issues, as you probably do too, so I have found it most helpful to just hand them a print out. In the print out I include a list of all current diagnosis, current medications, allergies, special diet needs, and the list also includes a list of all of my other specialists and their phone #'s.

Keeping the above helps for the following reasons:

1-I don't leave anything out or forget something because of being rushed. I review the sheet before printing it, make any necessary changes and then at the top I add "As of January 23, 2010" (or whatever the date is) so they know the list is current.

2-Dr's and nurses love having the print out because it saves them a lot of time (they don't want to talk in depth about all these issues even though they need to know they all exist) AND they don't have to worry about accidentally leaving something out because I've done the work for them.

3-It puts a lot of pertinent information in one place that is easy for the Dr and staff to refer back to when/if needed.

In terms of your experience with this particular Dr I can see two sides to this. You have to feel your needs are being met so if you feel that isn't happening then you might want to search for a new Dr. For routine GYN checks your ANS/EDS related diagnosis may not really mean much to them or be impacted by the routine exam. If she does any sort of surgery or procedure for you then she would need to understand your other issues.

In terms of hormone issues, If you are starting to deal with menopausal issues that may impact your ANS stuff more but it might not but either way there may not be much she can do about that. Maybe a better way of phrasing it is to say even in the general population there are some women who have an awful time with the hormone changes during menopause and then there are woman who have a relatively easy time so in your Dr's eyes your underlying condition may have nothing to do with the menopause changes nor is it outside of the "norm' experience that many of her patients face.

Having said that, that seems to be her school of thought and HER approach. You may feel more comfortable with a GYN who specializes in hormone issues and treats these fluctuations during the entire process of pre-meno. to post meno.. A Dr who would regularly test your hormones and start you on a rx for replacement based on labs. The difficulty in that is that while you are going through menopause your body can be making drastic changes in relatively short periods of time.....which is why some physicians choose not to use hormone replacement until the patient is actually in menopause where the hormones are more stable levels even if they are reduced at that point. Regardless, if you think you want to try replacements at this point to see if it would help you any or bring relief then you can ask your current Dr if she is willing to do all the testing and if she isn't then start searching for a GYN who specializes and has an specific interest in the hormone issues.

I have had some exams that caused minor cramping and light spotting that went away within a day or two. Especially as you get older the exam can have more discomfort. Next time you have an exam I would tell them you had this reaction the last time and it may be as simple as them needing to use a smaller instrument next time

[juliegee]

Hi Maxine-

We ALL struggle with this one. I am so lucky because my GYN has a connective tissue disorder and has had a dissected carotid artery twice as a result. (She's a young woman- 40's) I think there's a few things your GYN is missing. Before you read further, this is way too much info for fellows, so I strongly advise switching topics if you are of the male persuasion .

1. With connective tissue disorders, hormones are generally not recommended as they can worsen risks for dissections/aneurysms. I know HRT isn't something you're considering now. But, trust me, when you NEED it- you NEED it. (I had hot flashes every 10 minutes before I relented Talk about worseing your POTS!!! ) Your doc needs to understand the risk/benefit ratio of this decision. Quick FYI- even my GYN plans to use HRT when the need arises. She believes it can be done safely on connective tissue patients with minimal, but effective dosing.

2. With your connective tissue disorder, things slip d-o-w-n. When I cough or sneeze unexpectedly (without first tensing my abdomen) I feel my uterus uncomfortably push down, trying to protrude through my "V". This affects your bladder control, etc. Your GYN must be aware of your underlying connective tissue issues as you are at risk for uterine prolapse, etc.

3. Your doc is just plain wrong not to see you annually. My GYN told me about not needing to do a pap every year if things are normal. I cheered while in the stirrups And she said, "Not so fast- you still need an annual pelvic exam." There are many things they check for, including enlarged ovaries (very important with your Mom's "iffy" medical history. (BTW, An annual CA-125 (blood test) would also be really helpful to monitor for malignancies- some deadly uterine & ovarian stuff.) They also check for fibroids, etc.

4. Has your GYN ordered a bone density test for you yet? That's also something GYN's are supposed to screen for. With ALL of your bone issues. YOU, of all people, need to be on top of this (and you probably are- just throwing it out there .

In short, I think you probably should look for a new GYN or work on your existing one. YOU, as a whole person, must be considered- even while docs focus on their individual areas of expertise. I always feel uncomfortable when relaying my complex medical history. Like you, I keep it short, and I use a lot of humor. We all have our own personalities and style. I find that this deflects the seriousness of things, while relaying important information. Humor also helps me feel less vulnerable and more in control- if that makes any sense Sorry this happened to you.

Hugs-

Julie

[juliegee]

I LOVE Pooh Bear's idea of writing it all down. I also do that- meds and pertinent DXes. EVERYONE, especially the nurses, really appreciate that. Regarding pertinent DXes....it's sometimes hard to figure out what is- and- what isn't. I"M LEARNING, IT"S ALL PERTINENT. For my GYN... "I have an autonomic dysfunction caused by an underlying connective tissue disease and MCAD." I figured (I was wrong!) that she doesn't need to know about my GERD, pineal cyst, etc. Strangely enough, later she did...

Example: my breasts were leaking recently. My GYN scheduled an MRI. THAT'S when I revealed my already DXed pineal cyst. She found an enlarged pituitary/microadenomas that could be exacerbated by my ranitidine used to treat GERD and MCAD. She needed to know ALL of that to properly treat me.

Ultimately, it does overlap. Choosing how to share is complex. Writing down the pertinent stuff and even what you consider to be non-pertinent stuff is a great idea.

Julie

[erickamcc0523]

I LOVE Pooh Bear's idea of writing it all down. I also do that- meds and pertinent DXes. EVERYONE, especially the nurses, really appreciate that. Regarding pertinent DXes....it's sometimes hard to figure out what is- and- what isn't. I"M LEARNING, IT"S ALL PERTINENT. For my GYN... "I have an autonomic dysfunction caused by an underlying connective tissue disease and MCAD." I figured (I was wrong!) that she doesn't need to know about my GERD, pineal cyst, etc. Strangely enough, later she did...

Example: my breasts were leaking recently. My GYN scheduled an MRI. THAT'S when I revealed my already DXed pineal cyst. She found an enlarged pituitary/microadenomas that could be exacerbated by my ranitidine used to treat GERD and MCAD. She needed to know ALL of that to properly treat me.

Ultimately, it does overlap. Choosing how to share is complex. Writing down the pertinent stuff and even what you consider to be non-pertinent stuff is a great idea.

Julie

You have a pineal cyst as well? I was found to have one about 2 years ago (when my migraines were at their worst) that was 2 cm large. Have you read or heard anything where this might be related to other symptoms... I know those with an enlarged one, because it can affect melatonin levels, can have sleep disturbances and migraines.

[firewatcher]

"Have you read or heard anything where this might be related to other symptoms... I know those with an enlarged one, because it can affect melatonin levels, can have sleep disturbances and migraines."

It can press on the internal arteries of the brain as well as nerves causing eye movement problems. Melatonin regulates much more than sleep as well, it is very closely tied to the female hormonal cycle, crossing into the neuro-endocrine realm.

I've got a pineal cyst too. My limited research has pointed out to me that no one will do anything other than monitor it, unless it is causing other problems. 40% of the entire population have a pineal cyst, most cause no symptoms at all. Of that 40%, 1-4% have cysts larger than 5mm and the severity of the symptoms do not correlate with the size; a 5mm cyst can cause occular palsy and severe migraines while a 2cm cyst can cause no symptoms whatsoever. I've had galactorrhea (leaky breasts) since my first pregnancy 11 years ago, all with normal prolactin levels.

I have a complete medical history "packet" that I give any new doctor.

It has a one page, chronologically ordered medical history of bullet points (menarche, migraines started, broken arm, first pregnancy....),

a list of current medications, dosages and why, ***Nurses LOVE this!****

a page of current and past diagnosing doctors with practice name, fax and phone numbers,

a page of current confirmed medical diagnoses and suspected disorders and who and when dxed

and finally a one page list of current symptoms and current medical issues

[Maxine]

Thank you all so much for your valuable information.

Poohbear, I love the idea about having a list----and if I were a nurse I would LOVE IT! Less work....

Julie, I never thought of hormone replacements affecting the EDS vascular issues. That is so important for a gynochologist to know!

I don't think this doctor is the right one for me, as she really seemed apathetic, especially ignoring the whole cancer issue with my family. My mother had bleeding from "down below"-----the reason I say "down below" is because it could have been the vaginal area, but also could have been urethra area, considering they did find a small tumor in the bladder. My mother had a horrible gynochologist----LAZY----AND STUPID. It's hard to believe she worked for this woman part time when the receptionist wasn't there. They were friends, and she came to a couple birthday parties and cookouts at my parents several years ago.

I went to this doc once when I was first crashing with POTS to see if my hormones could be causing it. I was 41 years old-----I thought it was possible. I was really desparate then, and wanted a reason for this mayhem that was going on inside my body. She actually laughed at me, and told me to "RELAX".

The last CT scan done on my mother (which was sat on for 8 days while they sent her to PHYSICAL rehab.) showed cancer in her lungs, abdominal cavity, pancreas, stomach, liver, and bladder. My mother had her uterus and her overies. She was the only woman in her family who didn't have fibroids, all the rest of my aunts had to have hysterectomies---Three of them. My mother's older sister had a hysterectomy in 1970 due to huge fibroids. They left her overies in her, and in 1991 she kept having bladder infections----or so they thought. She had to go in for IV antibiotics, and some other kind of procedure that I don't remember. She got another opinion, and they said she had a large cyst on one of the overies. Well, when the opened her up, it was the size of a soccer ball, and they ended up removing six inches of her bowel-----they overies were gone----probably consumed by the cyst. One year later she was diagnosed with a huge cancerous brain tumor, that was wrapped around her brain stem, and went up the side of her head.

She had to go down to Cincinnati to have her surgery, and we were told she may not survive. She did for over 10 years, but had a stroke during surgery, and was never able to work or drive again. She had to learn how to talk, walk, write ect. after this. She had a great attitude----I was really close to her. They couldn't get all of the tumor, so she had radiation therapy.

She died of a subarachnoid hemmorage in Early 2003. My other aunt in Calf. had fibroids, and she also had a brain tumor removed. She still has a small part of it left. Her doctor didn't take her seriously when she had strange symptoms. The tumor was in a part of her brain that gave her symptoms much like ours, someone with ANS dysfunction. She finally collapsed on the floor, and when she go to the hospital they did a CT scan and found the tumor. The surgeon said she would have died within 24 hours.

I remember talking with my Aunt in Calf. many times on the phone, as I was the only one who didn't think she was crazy. We have developed a close bond since then. We have always been close----all of my mother's sisters----we were a close family, but my Aunt and I have an understanding of eachother that know one else has.

I remember my second or third appointment with Dr. Grubb. I told him about my two aunts with brain tumors, and he immediately wrote up an order for an MRI of brain and neck. This is how I found out about my neck issues in 2002. To this day the neurosurgeons I have seen blow off the lesions in my brain, the collection of fluid in mastoid area (that where my other aunt's tumor was). Some MRIs say fluid in mastoid area, some say opacification (it's been on all MRIs and Ct scans for 5 years). NO history of mastoiditis---and I just had a full workup by an ENT. With the missing left vertebral artery on the left on the brain MRIs, but yet it's showing up in my neck, it would seem locigal to investigate what's going on back there considering the cervical/cranial instability.......(oh, wait! That isn't real either). Dr. Grubb is the doctor that got the ball rolling for anything to be investigated. I have an orthopedic surgeon that has validated the instability, but he doesn't work with vascular issues. Something isn't right back there. It's so difficult when only half the docs do thier job.

I do see my endocrinologist on March 4th. I'll see what happens with that. MY thyroid antibodies are very hihg as you can see from another post. However, the thyroid levels are fine----- .

Thanks so much for your help! I will work on that list poohbear.

Maxine :0)

[anna]

Maxine I have just PMed you I hope you do not mined!

Anna

[Maxine]

Thanks Anna,

I'll be asking my PCP about genetic testing tomorrow. My brother's oncologist wanted him to do this, but he didn't want to do it. I don't think he understood how this could affect his family----his two grown children.

I sent you a PM.

Maxine :0)

[flop]

Wow - healthcare is SO different for you guys in the USA compared with us in the UK.

PAP / Smear - in the UK these are done every 3 years between ages 25 to 49, then every 5 years aged 50-64. Smears are only done more often in people who have had abnormal results in the past. We have a government run screening program that automatically knows when a woman needs her next smear and sends out a reminder letter. The results are then feed into the computer and it keeps track of any treatment or if you need more frequent tests.

We would only see a gynaecologist if we had an abnormal smear or had symptoms of a gynae problem (like abnormal bleeding). A lot of women in the UK have probably never had a pelvic exam (well until they got pregnant!).

Someone mentioned having a Ca 125 blood test to screen for cancers - some doctors do use these sort of tests for diagnosing but they aren't scientifically validated for this (a negative test doesn't guarantee no cancer, and a positive test doesn't mean you have cancer). The way these tests were designed was to use as a monitoring system for people who are known to have cancer - if the levels are going down then treatment is going well, a rise in levels would indicate that the cancer may be spreading or not responding to chemo.

Flop

[Maxine]

Flop,

My brother had CA levels tested-----I rememeber his talling about this. This is not an accurate test to screen for cancer.

I just called my brother's oncologist's office to see about testing for lynch syndrome---- http://www.mayoclinic.com/health/lynch-syndrome/DS00669 , since my brother died of colon cancer, my mother died of abdominal cancer 2 years beofre that, her brother died of colon cancer two weeks after she died, her sister died of brain cancer in 2003, and my other aunt had a brain tumor removed in late 2001.

The receptionist that answered the phone at the oncologist's office said she would ask him about the genetic testing and call me back. I don't know if I have to be the cancer patient to be screened. My brother was offered the trsting by the oncologist but refused it.

Maxine :0)

[icesktr189]

i know how you feel.. i went to see my high risk ob yesterday and she looked at me like i was crazy. also because they had no clue what POTS was, they took my blood pressure after i was laying down for over 45 mins. i told them that i would of course have okay blood pressure because i have been laying down. so they sat me up, not even for two seconds and took it again. UGH frustrating! then the nurse says.. "oh its not that bad!" yeah okay, thats why i passed out yesterday? haha. they just dont understand. and of course i had horrible brain fog while talking with the specialist. it didnt help she talk a hundred words per minute either.

[firewatcher]

I saw my OB/GYN yesterday for my yearly. I had my medication list and a list of current diagnoses/suspected diagnoses and when and who did the diagnosing. The nurse was thrilled with the meds list, my doctor was thrilled with the diagnoses list. He held that sheet up in front of me and said: "Do you have any idea how important this piece of paper is?! This is your current medical condition in a nutshell." He also congratulated me for taking charge of my own health and told me that no one will care more about it than I will.

[janiedelite]

I saw my OB/GYN yesterday for my yearly. I had my medication list and a list of current diagnoses/suspected diagnoses and when and who did the diagnosing. The nurse was thrilled with the meds list, my doctor was thrilled with the diagnoses list. He held that sheet up in front of me and said: "Do you have any idea how important this piece of paper is?! This is your current medical condition in a nutshell." He also congratulated me for taking charge of my own health and told me that no one will care more about it than I will.

That's awesome! I keep the office notes from my last appointment with the neuro at Mayo. It kind of condenses why my labs and vitals are abnormal, and what he thought the approach should be and has been what I pull out during my first appt with a new doctor. However, after trying and failing all the meds he recommended during that visit, I think I'll type up a "cover sheet" for my medical records with meds, diagnoses, allergies, etc. Great idea!