gingy
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Post by gingy on Oct 26, 2023 19:58:09 GMT -6
Legit question as I’m new to this side of things: Is there a reason I shouldn’t let my PCP manage it? I’m not against getting the referral but lordy I have too many doctors already.
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sae82
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Post by sae82 on Oct 26, 2023 22:08:33 GMT -6
Legit question as I’m new to this side of things: Is there a reason I shouldn’t let my PCP manage it? I’m not against getting the referral but lordy I have too many doctors already. Headaches are tricky and you want someone well versed in them treating you-just like you’d see a specialist for any other ailment. And I would get an MRI as a baseline even if she thinks she knows what they are-you just want to be sure.
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AmyG
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Post by AmyG on Oct 27, 2023 0:59:08 GMT -6
Legit question as I’m new to this side of things: Is there a reason I shouldn’t let my PCP manage it? I’m not against getting the referral but lordy I have too many doctors already. Sure you can stay with primary dr. Iknow its easy to think its just a headache, right? But it's not a bad idea to get a look see by a specialist when a new onset thing that hurts a lot happens. they may agree with your Dr's recommendations and then primary doc continues your care. Or since they see this kinda thing more often and have more training and experience they may think of tests,meds,or other treatments your dr doesn't know about. well yeah of course that's why you see a specialist but it's just a headache. since a specialist appt could be months from now first available, theres likely time to try your new meds in the meantime. I've regretted specialist visit as a complete waste of time once, and just a not good fit for me another time but other handful of specialists have been very very useful.
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gingy
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Post by gingy on Oct 27, 2023 7:22:41 GMT -6
I called and left a message. PCP is out until Monday, but hopefully I hear back from her soon. DH pushed back a bit when I told him I was calling, but I think it's mostly money related. Chronic illness is expensive. We already pay enough each month toward my current doctors and meds.
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gingy
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Post by gingy on Oct 27, 2023 8:47:25 GMT -6
Her nurse saw the message and called me back. She said they'll want to wait and see how the steroid/topamax does before they refer. I figured it wouldn't be easy with her--we've butted heads before over medication choices but there's no one else better/easier to get in to in my network. I wonder if my rheum could help me out.
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sae82
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Post by sae82 on Oct 27, 2023 12:08:17 GMT -6
Her nurse saw the message and called me back. She said they'll want to wait and see how the steroid/topamax does before they refer. I figured it wouldn't be easy with her--we've butted heads before over medication choices but there's no one else better/easier to get in to in my network. I wonder if my rheum could help me out. I’m assuming that’s because you need a referral to a specialist for insurance? Topomax has some unpleasant side effects so just be sure you’re aware/prepared in case you experience some-it’s sometimes calls dopomax bc people can’t find the right words to use and they think they are becoming dumb or having a stroke.
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gingy
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Post by gingy on Oct 27, 2023 12:27:59 GMT -6
Her nurse saw the message and called me back. She said they'll want to wait and see how the steroid/topamax does before they refer. I figured it wouldn't be easy with her--we've butted heads before over medication choices but there's no one else better/easier to get in to in my network. I wonder if my rheum could help me out. I’m assuming that’s because you need a referral to a specialist for insurance? Topomax has some unpleasant side effects so just be sure you’re aware/prepared in case you experience some-it’s sometimes calls dopomax bc people can’t find the right words to use and they think they are becoming dumb or having a stroke. Quite possibly--my insurance is also a PITA, so I get it. My aunt has been on Topamax forever and gave me a heads up. She said the side effects only lasted a couple weeks for her, but she's been on it 15 years now and loves it. I know it's also not super likely that the first thing we try will be the last. Such is life.
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sae82
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Post by sae82 on Oct 27, 2023 12:39:43 GMT -6
I’m assuming that’s because you need a referral to a specialist for insurance? Topomax has some unpleasant side effects so just be sure you’re aware/prepared in case you experience some-it’s sometimes calls dopomax bc people can’t find the right words to use and they think they are becoming dumb or having a stroke. Quite possibly--my insurance is also a PITA, so I get it. My aunt has been on Topamax forever and gave me a heads up. She said the side effects only lasted a couple weeks for her, but she's been on it 15 years now and loves it. I know it's also not super likely that the first thing we try will be the last. Such is life. Unless you definitely need a referral for insurance why not just make an appt with a headache specialist? Why do you need your pcp or rheum to do it? I don’t need pcp referral so I just make my own specialist appts when I need one.
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gingy
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Post by gingy on Oct 27, 2023 13:54:36 GMT -6
Quite possibly--my insurance is also a PITA, so I get it. My aunt has been on Topamax forever and gave me a heads up. She said the side effects only lasted a couple weeks for her, but she's been on it 15 years now and loves it. I know it's also not super likely that the first thing we try will be the last. Such is life. Unless you definitely need a referral for insurance why not just make an appt with a headache specialist? Why do you need your pcp or rheum to do it? I don’t need pcp referral so I just make my own specialist appts when I need one. The neuro clinic requires a referral. That's how basically all specialties are here.
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Eagles
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Post by Eagles on Oct 27, 2023 21:56:48 GMT -6
Her nurse saw the message and called me back. She said they'll want to wait and see how the steroid/topamax does before they refer. I figured it wouldn't be easy with her--we've butted heads before over medication choices but there's no one else better/easier to get in to in my network. I wonder if my rheum could help me out. Ask your rheum. Quite frankly, a PCP is not equipped to manage cluster headaches, and I'm surprised she was that confident in her dx.
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AmyG
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Post by AmyG on Oct 28, 2023 11:03:39 GMT -6
I'd give the med a try and at the first sign of yucky side effect or st the next headache ask primary for that referral again right quick. Some primary docs are very very slow to refer out And when insurance requires referrals it puts you in a bad place.
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AmyG
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Post by AmyG on Oct 28, 2023 11:17:45 GMT -6
Dry needling on Thursday has given me a lot of pain relief In butt leg back of thigh and calf. I had forgotten how much relief I can get with 21 needles with electricity attached.
I love my pt. And he's nice to talk to and good looking to boot.
🙃
My si joint low back pain had been acting up and he recommended I avoid one sided and twisting exercise and activities for a bit. When trying to avoid those activitues it seems Everything I do is one sided or twisting.
I'm supposed to try an si belt to see if it helps any while ramping up some strengthening exercises to help stabilize pelvic region and lower back/core. Pelvic floor therapists had me stop those exercises to see if they were increasing pelvic floor pain but seemed to have opposite result. I have weaker core and leg butt pelic stability sucks. And pain tend higher.
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hawkward
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Post by hawkward on Oct 29, 2023 7:23:11 GMT -6
gingy it’s nice to have referrals and established relationships with specialists even if you don’t go regularly. That way if something comes up, your PCM can consult or you can get in easier.
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AmyG
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Post by AmyG on Nov 2, 2023 16:29:17 GMT -6
sitting here with completely numb leg from US guided piriformis injection.
Usual directions for after care are to resume normal activities but not strenuous for 1 or 2 days.
Dr suggests I try to limit activity that makes piriformis or glutes move for at least twice that. since this is 2nd shot I've had and they only do 2. And since pelvic floor gyn has other options but can't fit me in or I cant afford them til after 1st of year.
So trying not to move for 5 days except bathrooms trips, slow walking and simple stretches. Supposed to take double on muscle relaxers and vag diazepam
If we can get piriformis to stay relaxed for days maybe it will stick.
Then referral back to pt to try to increase glute strength without annoying piriformis.
And also see what pain dr thinks about si joint next week.
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AmyG
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Post by AmyG on Nov 3, 2023 13:55:22 GMT -6
My piriformis is very mad about having a needle stuck in it so my left leg is running mostly numb again today. arg
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nelzie
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Post by nelzie on Nov 10, 2023 14:07:55 GMT -6
Still fighting insurance here. After mounjaro was denied we tried metformin and after two and a half weeks of violent diarrhea 10-15 times every day my doctor told me to go off it and we would try for the mounjaro again. Insurance still denied it. So my doctor decided to try for wegovy since my DH was able to go on that. But I can't find it in stock anywhere. So now we are filing an appeal for the mounjaro with insurance and I'm waiting on the doctor to send that stuff in. I have no idea how long that process takes. Then I finally got a glucometer but my insurance denied the lancets so now we are trying to get that straightened out. So it's been almost 3 months since diagnosis and I still haven't been able to get meds or even monitor my blood sugars.
I have my 2nd carpal tunnel surgery Monday. It's on my non dominate hand so I'm hoping it will be easier afterward. I still have pain and trouble putting pressure on my right hand as well was lifting things though.
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AmyG
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Post by AmyG on Nov 10, 2023 15:47:27 GMT -6
nelzie, DH just uses the blood sugar test supplies from walmart, they are cheaper than most everywhere we've looked.
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nelzie
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Post by nelzie on Nov 10, 2023 17:51:54 GMT -6
nelzie, DH just uses the blood sugar test supplies from walmart, they are cheaper than most everywhere we've looked. Thanks, I'll have to check how much my kind are there. I looked up the strips on Amazon and it wasn't too bad. My insurance will only cover a box of 25 a month 🙄
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AmyG
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Post by AmyG on Nov 10, 2023 20:32:59 GMT -6
nelzie, DH just uses the blood sugar test supplies from walmart, they are cheaper than most everywhere we've looked. Thanks, I'll have to check how much my kind are there. I looked up the strips on Amazon and it wasn't too bad. My insurance will only cover a box of 25 a month 🙄 Yeah insurance sucks for something so important. Dh actually bought a new cheap machine at Walmart too cause the one insurance "gave" him free had very expensive test strips. Very much arg.
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nelzie
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Post by nelzie on Nov 10, 2023 22:04:39 GMT -6
Thanks, I'll have to check how much my kind are there. I looked up the strips on Amazon and it wasn't too bad. My insurance will only cover a box of 25 a month 🙄 Yeah insurance sucks for something so important. Dh actually bought a new cheap machine at Walmart too cause the one insurance "gave" him free had very expensive test strips. Very much arg. It's so frustrating. Insurance is a joke. I don't even really know what's considered good or expensive. The ones for the machine I have I found for $30 for 60 on Amazon.
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AmyG
Ruby
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Post by AmyG on Nov 10, 2023 22:43:27 GMT -6
Yeah insurance sucks for something so important. Dh actually bought a new cheap machine at Walmart too cause the one insurance "gave" him free had very expensive test strips. Very much arg. It's so frustrating. Insurance is a joke. I don't even really know what's considered good or expensive. The ones for the machine I have I found for $30 for 60 on Amazon. Dh uses a relion confirm and 50 test strips are $15 at Walmart right now. He probably should look around again since it's been years since he comparison shopped for cheapest and decided on walmart and this brand. But it was years into testing before he even questioned if he could use something aside from what dr recommended with rx and insurance.
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AmyG
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Post by AmyG on Nov 12, 2023 16:01:12 GMT -6
whisper font (whatever that is) shhhh so far the shot in my piriformis my toes are no longer going numb. pain in pelvic floor is still present at end of day but I repeat no numb toes by end of day.
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Post by sherminator on Nov 12, 2023 18:52:17 GMT -6
I have a bad hip. Unknown cause. It’s better some days but just throbs others. I need to get on investigating this because advil doesn’t touch it and even Tramadol isn’t very effective. It’s affecting my sleep and my gait is uneven at times. I walk like a penguin. Other days it’s not so bad but I can’t pinpoint when it’s worse- sometimes exercise seems to help other times makes it worse. Hobbling about makes me feel older than dirt. And rather cranky
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AmyG
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Post by AmyG on Nov 12, 2023 19:18:15 GMT -6
sherminatorLove tit for the visual of walking like penguin. Get an eval from someone. Hip pain sucks
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Post by kittyriot on Nov 13, 2023 14:15:07 GMT -6
I have a bad hip. Unknown cause. It’s better some days but just throbs others. I need to get on investigating this because advil doesn’t touch it and even Tramadol isn’t very effective. It’s affecting my sleep and my gait is uneven at times. I walk like a penguin. Other days it’s not so bad but I can’t pinpoint when it’s worse- sometimes exercise seems to help other times makes it worse. Hobbling about makes me feel older than dirt. And rather cranky A bum hip is the largest of my issues - for me it seems to stems from compression happening through my spine (through my L4/L5 and SI). The compression was diagnosed first with x-rays and then via an MRI. The pain can be excruciating and at times leaves me hobbling and walking with a cane. I've also been recently diagnosed Hypermobile Ehlers Danlos Syndrome. So the ligaments around my hop are losing their elasticity and have been for years so some of the pain is simply my muscles attempting to take on the slack of keeping my joints in place. All of this explains a ton for me, leading all the way back to my childhood years. I was a stupid bendy gymnast. The actual journey of labeling and sorting through my chronic pain started about 7 years ago, trying to figure out why my arms and legs were going numb. The first doctor I saw was my GP, she sent me to a Rheumaltologist. In the end, the combination of fibromyalgia, spinal compression and hEDS seem to make sense, but do know even with a good PT, osteopath and massage therapist, I am rarely pain free and have had to come to a degree of acceptance that my journey is more about pain management than anything else.
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AmyG
Ruby
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Post by AmyG on Nov 13, 2023 14:22:46 GMT -6
kittyriot, It's a lot a lot. I'm sorry that pain isn't fully managed. that seems to be a hard thing to chase down
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AmyG
Ruby
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Post by AmyG on Nov 13, 2023 14:23:46 GMT -6
I'm finding out how well my diclofenac works this week for my knee and hip pain. Going without it for colonoscopy sucks
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nelzie
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Post by nelzie on Nov 13, 2023 16:20:47 GMT -6
I had my carpal tunnel surgery this morning and DH tested positive for covid this afternoon. Fun times here 😬
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AmyG
Ruby
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Post by AmyG on Nov 13, 2023 16:21:59 GMT -6
nelzie, omg that does not sound good at all. I'm sorry
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Post by Rusty Red on Nov 14, 2023 15:43:32 GMT -6
My hips are wrecked. Arthritis in both, torn labrums in both, FAI in both. Good times, dem hips.
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