Parkinson's Disease Tulip


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Old 04-12-2021, 05:13 AM #1
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Default Shopping for a new Neurologist

I've had the same neurologist for 25 yrs. Early Feb. his assistant calls me & says he's retiring due to health concerns & that another doc is taking his place, and this other doc will NOT continue to write my prescriptions for hydrocodone & diazepam. The call came 2 weeks before my hydrocodone prescription expired. The assistant goes on to say that I should seek the services of a pain management clinic for the hydrocodone, but she didn't say what I should do about the diazepam--I take for muscle spasms--the kind that cause me to randomly throw the TV remote across the room, or "punch" myself in the face as I curl up in the fetal position to go to sleep. Yeah, really bad spasms. This call came out of the clear blue sky, after 25 yrs of being a model patient. Never once did I ask for an early refill for anything. I never even "asked" for the hydrocodone. The doc prescribed it based strictly on an MRI Report way back in 2011 (C5, C6, & C7 of my neck are messed up). Yes, I've been taking the hydrocodone since 2011, and now my neurologist is retiring, but no one on his staff of over 50 other neurologists is willing to continue to write it for me. Actually, several of these "other" docs have written the hydrocodone for me on the occasions when my doc was out sick or on vacation or whatever. Hmmm. They'll cover for my doc when he's healthy and working, but not when he's sick and retiring.
Now, without any specific explanation as to “why”, no one on staff is willing to write my hydrocodone prescription. I understand they’re under no legal obligation. Ethically, however, I can say that something doesn’t feel quite right. So, I did some reading. I found that the U.S. Dept. of Health & Human Services says that “But once a patient is on opioids for a prolonged duration, any abrupt change in the patient’s regimen may put the patient at risk of harm and should include a thorough, deliberative case review and discussion with the patient. The HHS Guide provides advice to clinicians who are contemplating or initiating a change in opioid dosage.” (ref 01). It goes on to state that “Care must be a patient-centered experience. We need to treat people with compassion, and emphasize personalized care tailored to the specific circumstances and unique needs of each patient,” said Adm. Brett P. Giroir, M.D., assistant secretary for health.” (ref. 01).
So, I go to a pain management clinic. What a "racket" that turned out to be. Yes, I had to sign the same federal documents that I signed with my own neurologist. No biggy there. Trouble is, the first thing the doc says is that "we're going to have to wean you off the diazepam entirely." Then, you're going to have to come in for physical therapy 3 times per week if you want to et your meds. I'm thinking to myself--if I could actually show up "on time" 3 times per week for physical therapy, I'd be"employable", not on disability, and I wouldn't even be here now listening to this ridiculousness. Apparently, this lady simply didn't "understand" that someone who has had Parkinson's disease for 25 years isn't exactly tripping the live fantastic. I didn't even bother to try telling her about my sedentary lifestyle, and how my daily routine consisted of taking meds on time, maybe walking the dog, and checking the mail-box. I just went home, called her front desk, and had them forward my medical records to another nearby neurologist. So, now I guess I'm shopping for a new neurologist. Big fun.
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Old 04-12-2021, 10:15 AM #2
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Hi toyL,
I have MS, not Parkinson's, and so am a bit out of my territory here but it sounds as if your regular neurologist may be still around even though retirement has been announced--?

If you can still make contact with him, I think you should make an appointment with him and tell him everything you've said here. You're owed an explanation for why your rx's are being handled in this way.

Hydrocodone has had a very bad press lately because it's addictive, and maybe the other docs are running scared and just refusing to prescribe it for someone who's been taking it as long as you have.

If a new doctor wants to wean you off of it, it should be done gradually as I understand it, with considerable attention to whatever drug is prescribed in its place, if one is prescribed.

That this isn't being done is something you definitely need to bring to their attention.

You deserve better treatment than you got. I hope you can speak up and find your way to a better neurologist.

You might want to try a different place for a neurologist if there is one. You mention that your regular neurologist is on a staff of over 50 neurologists. This particular practice may have become too big to be doing its job right.
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Old 04-12-2021, 08:28 PM #3
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Default talk with your retiring neuro

Can you talk with your retiring neurologist to see if anything can be worked out?

Our first neuro "retired" because he was getting up there, but also he was sick to death of the insurance paperwork, reimbursement backlog, etc. and etc. ...BUT he advised us that he would, for, I think it was, $200/hour cash (this was back around 2006 or so) still see us, either at our home, his home, anywhere we wanted. It was incredible, and probably what medical care used to be like before health insurance came along. Your neuro may be willing to do something similar, although with COVID maybe you all can skype or video conference.

One thing that came to mind is that I don't think that a doctor/practice can just "abandon" you like this, leaving you high and dry with regard to meds you have been taking for years. You might want to look into whether your state has laws about patient abandonment and if so, whether might help you.

It's so hard to hear about things like this, I hope that you are able to get the care and medicines that you need
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Old 04-13-2021, 03:01 PM #4
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Thanks for your replies. I don't know what I'm supposed to do at this point. I live in IN, and the little guy here is practically invisible. Something strange is going on, because the assistant tells me my doc is sick and retiring, but the front-desk ladies tell me he is well and still seeing a few patients. The only way I'm "allowed" to contact him is by leaving a recorded message on his assistant's line. I don't know what I'm supposed to do. I know I can feel my neck starting to kick back into it's old familiar sensations--electric-shock pain, as the level of opioid in my blood is now way low. I titrated myself down by cutting the last 40 or so tabs in half, but...
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Old 04-13-2021, 03:53 PM #5
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Quote:
Originally Posted by toyL View Post
Thanks for your replies. I don't know what I'm supposed to do at this point. I live in IN, and the little guy here is practically invisible. Something strange is going on, because the assistant tells me my doc is sick and retiring, but the front-desk ladies tell me he is well and still seeing a few patients. The only way I'm "allowed" to contact him is by leaving a recorded message on his assistant's line. I don't know what I'm supposed to do. I know I can feel my neck starting to kick back into it's old familiar sensations--electric-shock pain, as the level of opioid in my blood is now way low. I titrated myself down by cutting the last 40 or so tabs in half, but...
I'd definitely leave the recorded message and make it clear that you're going to keep trying. And do keep trying. Leave a message twice a day for a couple of days if you can wait that long. If not, tell the front-desk people what is happening and ask them to give you a better way to contact him. He shouldn't have removed himself from contact with you with no advance notice, IMO.

Any chance of transferring to another doctor in the near future?
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Old 04-14-2021, 03:27 PM #6
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Default Ditto

Keep calling and leaving messages, and keep a log of when you call in case you need that down the road for any reason. If you can email the doctor/practice, even better, because then you have an automatic written log If it were me, I would make sure they understood the urgency of the situation, and how the change in meds is affecting me.

Is there no patient advocacy group you can contact? A local PD support group or such? A state, county, or even municipal agency that might could help? Just thinking off the top of my head.

I'm so sorry this is happening to you. Hang in there
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Old 04-14-2021, 05:47 PM #7
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Default I hear you!

Hurt and frustrated with doctors today too after calling to report my oxygen going below 90% now. Said can I get another overbite oxygen test. Got attitude rather than a yes. I have to talk to my new GP tomorrow on my one per day hydrocodone to continue for nerve pain in face. I will say I would be terrified if not for the Charlottes Web Hemp oil I use topically as part of pain help. But it is super for spasms. This oil is actually in research now and possibly already approved for a rare disease of Infantile Spasms. It comes in sticks like deodorant or tins too. I also taught myself a short form acupuncture too as another tool. I also do go to a pain clinic and they do nerve block injections for my occipital face nerve. A square of good. Chocolate at nite is helpful for spasms. Sculptor 44
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Old 04-15-2021, 08:21 AM #8
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Default sculptor44-have you looked at magnesium?

Most adults are deficient in magnesium, and insufficient amounts of magnesium in our body can cause spasms, cramps, etc. There is a lot of information about nutrition, including magnesium, here on NT, so check it out.

There are a multitude of forms available OTC for magnesium, none of which have great absorption, so my preferred method is epsom salts in a hot bath which will absorb directly into the skin. Plus, a hot bath may help you relax

If you aren't a bath person, you could try Magnesium Oil, a topical. I'm not sure it's available anymore, been awhile since we bought it, but you apply it topically- ideally to places like the bottoms of the foot to maximize absorption (lots of veins there). It's oily, but watery, so messy, just fyi.

I also like the topical because it's hard to absorb too much magnesium this way-and too much magnesium can result in diarreah which can cause all kinds of imbalances and issues on its own.

I hope this helps!
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Old 04-21-2021, 12:39 AM #9
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Found out my neurologist is very ill. Kind of felt sorry for the replacement doc. He's OCD. It's really not my place to judge but he seemed to have a serious case on his hands. But a bit of OCD seems like a good for a doctor. Right? He walked into the exam room with my records loosely scattered in his hands, sat down, and started reading. There seems to be this rather awkward/extended period of time transpiring, when I finally spoke up and asked him --"exactly what was your thought process behind your decision to completely discontinue my pain medication two weeks before I would need a renewal?" Of course, he didn't have a good answer. He just blamed it "new federal regs or guidelines or restrictions or pressures or whatever. He blamed it on the feds. A full 2 hrs later, I walk out with all three of the prescriptions I was worried about, plus a new one (modafinil). All that worry, and all it took was a face to face appointment. But, something still doesn't seem right. I'm somehow getting the impression that my "case" was passed off or handed down to the last guy on the list (i.e. the next in line to retire, at any minute). He did, however cut me way back on the hydrocodone, and it's not working. Exactly why, he felt the need to do this after 10 yrs., I don't know. I go back to see him Jun 9.
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Old 04-21-2021, 12:40 AM #10
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Thanks for your replies.
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