Author Topic: New Primary Care Doctor--How I got things done today--ankle pain anyone?  (Read 3162 times)

ynevar

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So, I went to the clinic today.  I have a new primary care doctor, who met me for the first time and he probably won't forget it either... LOL

I was on fire... I came at him with my list of things I wanted addressed:

1. Lip Biopsy - apparently he and my old PCP (who is retiring) had a discussion and instead of sending me to the large native hospital they are sending me back to the one in Seattle.  I told them if you send me to Anchorage you will have to pay: my airfare, ground transportation, meals, lodging AND for the procedure.  If you send me to Seattle you will only have to pay my airfare and remaining balance of whatever the insurance company doesn't cover.  Cheaper and it's what I want.  Make it happen.  He was receptive and said well I am new here so I need to figure out what steps to do.  I told him you need the green referral form, fill it out and get it sent to patient travel.  LOL  He said, the case manager does those, she will be in tomorrow.  I said okay... make it happen.

2. Pain Management - I stated the Tramadol is working but not 100%.  He upped it a bit and will see how that goes.  I won't hesitate to go back to him if it doesn't work.  I am going to be very assertive in every meeting I have with them.  I am done playing the patient patient. 

3. Menstrual Problems - My appointment was for my annual exam, which they weren't able to do because, yet again I have another period (that makes 4 in just over a month)!!! I told him I think that the menstrual changes are related to whatever is going on in my body, and he didn't want to give me any hormones to address it until he has had a chance to talk to the rhuematologist or after my biopsy.  I can handle that and that makes sense.  Just adds to my feeling like crap all the time, but hey. No answer there but I understand him not wanting to do anything just yet.  Now if I end up with ovarian or uterine cancer and they put it off I might raise heck... I see him again in a few weeks, we will discuss it again.

4. Rheumatologist - I explained I want the rheumatologist to lead my treatment, to make sure I am down there long enough for him to get the biopsy results back and start a treatment plan.  That I want him to defer to my rheumatologist's treatment recommendations and to coordinate that with him when they schedule my flight down to see the rheumatologist. 

I was so done playing and being patient.  The clinic is so inept for most everything except a broken finger, bronchitis or a sinus infection.  Minor routine interventional medicine.  I feel empowered and aside from really freaking sore; I can't walk today, by the way.  I have severe problems with my ankles occasionally.  Where they feel like they are sprained and I can't put any weight on them without a walking cast/boot.  Lasts for about 3 days and then I am fine.  But utter and complete pain, swelling, veins bulging in my ankle and foot.  Same thing happens in my hands sometimes and I can't even lift a coffee cup.  Familiar with anyone?  I hate this pain, is debilitating!  Praying the extra tramadol works!

Wow... I feel great even if I feel like crap!  I wasn't leaving that place without a better plan than waiting for someone to pull their finger out their..........

-Y


Joe S.

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Re: New Primary Care Doctor--How I got things done today--ankle pain anyone?
« Reply #1 on: September 09, 2010, 05:36:02 PM »
I was confused about your flight issue until I saw you are from Alaska.
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cmclien

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Re: New Primary Care Doctor--How I got things done today--ankle pain anyone?
« Reply #2 on: September 09, 2010, 06:31:52 PM »
Hi Ynevar,
Sounds like you had your stuff together today!  I'm sure that at least felt good.
Have you had blood work done by your pcp as far as ANA and SSA SSB tests go?  And if so what did those show?
Are there no rheumatologists in AK????  I can't believe you have to fly all the way to Seattle for this (I grew up in Seattle by the way :)  Is the rheumatologist you are seeing someone who sees lots of SJS folks?  some rheumys no very little about it.  Sorry if these are dumb questions just trying to play catch up.

And are you sure you want and/or need the lip biopsy?  They are a little controversial and my rheumatologist hasn't done one in 10 years by choice.  They are often mis-read etc., and some people here have been left with some permanant numb spots.   I'm not trying to freak you out or anything but I actually posted this question a couple weeks ago, here is the thread if you want to read it:

http://sjogrensworld.org/forums/index.php?topic=13176.0

If you're sure you still want it, look into a punch-lip biopsy as an alternative, no stitches required as far as my research goes and much easier on the lip.
Cindi

Bopeep

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Re: New Primary Care Doctor--How I got things done today--ankle pain anyone?
« Reply #3 on: September 09, 2010, 06:36:34 PM »
Oh heck yes, thats me. I have such pain in my feet and more recently my ankles. some days, in fact most days I can hardly walk, and my hands are exactly the same.

At the moment i am not taking any medication, but I can see that coming to an end soon. You can just take a certian amount of pain.

I also took the assertive way with all my drs and now I find they are a lot more involved with any issue i now have.

ynevar

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Re: New Primary Care Doctor--How I got things done today--ankle pain anyone?
« Reply #4 on: September 09, 2010, 06:58:20 PM »
Joe,

Yes, in Alaska which means the best place for me to go is Seattle.  No Rheumatologist where I live.  So I am so very glad I went south last month and have them following up there instead of fumbling in the dark here!  

I am beat... still wondering about the severe "sprain" pains, get it in my wrists too, where I can't even lift a cup of coffee.  UGH!

-Y

inga

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Re: New Primary Care Doctor--How I got things done today--ankle pain anyone?
« Reply #5 on: September 09, 2010, 07:09:33 PM »
Low iron and ferritin are likely due to the excessive bleeding you are having.  You can get PN from chronic iron deficiency anemia. Sicca can happen from PN.  I can't understand why they have not done an ANA and ENA.

ynevar

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Re: New Primary Care Doctor--How I got things done today--ankle pain anyone?
« Reply #6 on: September 09, 2010, 09:20:43 PM »
Well this started LONG before the menstrual issues. 

I did have a bunch of testing, 38 vials of blood, and my ANA etc I think was okay.

However, 3 weeks before I had the testing I was put on steroids by my primary care doctor.  I am wondering if that skewed the results? 

One of the doctors said that I have no markers that indicate any inflammation is going on, however if you look at my swollen hands at times, or feet, arms and legs etc.  Definitely inflammation...

I am happy I am going back to the Rheumatologist.  I am somewhat confident that he will figure out what is going on and make a diagnosis.  If he doesn't I will keep it up and ask for a Rheumatologist who specializes in Sjogren's, but seriously--he rocks and has been the only one taking me really serious thus far. 

-Y

LizPetillo

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Re: New Primary Care Doctor--How I got things done today--ankle pain anyone?
« Reply #7 on: September 10, 2010, 04:15:42 AM »
Ankle pain???  OMG YES!

The achillies tendons are shot.  They hurt and if you touch them .. YEEEOWWWCH!   The joints in the ankles hurt like heck.  Add the leg numbness and ache (at the same time .. go figure) and about half the time I have a hard time even walking around the house.

It hit hard and fast too.

navydad

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Re: New Primary Care Doctor--How I got things done today--ankle pain anyone?
« Reply #8 on: September 10, 2010, 08:29:41 AM »
I;ll trade your ankle pain,,, and give you my burning feet and legs up to my knees,, and from there u to my hisp,, just a slight burning,,, you can have my hands too,, they dont work to well,, might have to get them fixed before you can use them,,, I commend you for living in alaska,,, I could not survive one winter day up there,, I cant stad it at 60 degrees

Epson

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Re: New Primary Care Doctor--How I got things done today--ankle pain anyone?
« Reply #9 on: September 10, 2010, 12:53:11 PM »
Excessive pronation and supination can cause a number of ailments that affect the foot, ankle, knees, hips and back.  Have you seen a foot doctor yet?  I suffer from supination and wear out the outer edge of my shoes in a matter of months, by 6 or 7 o'clock I can hardly walk, even though I  use orthotics in my shoes.

By evening my ankles, metatarsal bones and shins feel like someone took a hammer to them and can't walk very far because of the pain and bones popping.  I also think it is effecting my knees, hips and back as well, seems like the foot and ankle bone are wearing away.

ynevar

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Re: New Primary Care Doctor--How I got things done today--ankle pain anyone?
« Reply #10 on: September 10, 2010, 06:08:33 PM »
Navydad,

I have the burning in my hands too... happens before they start to have that maddening deep ache... :(

I haven't seen a podiatrist yet... We'll see.

-Y