Access to medical care

[Rustsmith]

I am now officially between a rock and a hard place when it comes to medical care.

In addition to my RLS, I also suffer from occasional migraines. I think that I may also be starting to develop Essential Tremor in my right hand but need to consult with a neurologist on that because I don't want to start self-diagnosing symptoms as they pop up with age.

No neurologist in the town where I live will treat my RLS because I require an opioid. Therefore, I have to drive 100 miles each way to see an RLS specialist at the state medical school. So, I tried to see a local neurologist to treat my common migraines and to talk about the occasional bouts of my shaking right hand. They will not accept me as a patient because I am seeing a different neurologist! And they won't treat my RLS. What is the medical community coming to when doctors can pick and choose patients based upon their situation and NOT because the doctor lacks expertise? I am now left with trying to work with my GP for migraine and tremor treatments and these are both waaayy out of his league even though he will probably try to help if I can provide him with some guidance. So, it is rapidly becoming a situation where it is "Patient, heal thyself".

[Polar Bear]

Steve, it does very much sound like Patient Heal Thyself.
We have often found ourselves providing documentation to help our treatment of RLS, sometimes feels like 'Heal Thyself', we've become used to doing this.

When in comes to a tremor, well yes, we want to be seen by a Neurologist who knows what its all about.
Will your GP find a Neurologist who will see you with regard to Migraines and tremor, or is this not how it's done in the USA.

[Rustsmith]

PB, that is supposed to be how it works and sometimes insurance policies require it, but fortunately my insurance allows me more freedome. My GP sent a referral for me to what he thought was the best neurologist in the area. I had to chase them down when they didn't contact me. That is when I found out that I was not a suitable patient for the practice due to my opioid use. I did a search and the only neurologist in town who isn't associated with one of the two local clinics has such low patient ratings that I wouldn't see him for any sort of treatment. I had checked with the two local 4 yrs ago and know that I won't waste my time with them.

So, I took it upon myself and located a neurologist who is located about 50 miles away. I have an appointment with her on Wednesday morning.

[ViewsAskew]

That is horrible, Steve! Infuriating, maddening...but mostly? Seems to violate the Hippocratic oath if you ask me!

[Rustsmith]

I came across a report published about 2 weeks ago in US News. They conducted a poll of about 100 GPs in Michigan. They asked if the doctor would accept their mother as a new patient and then added "oh, by the way, she is taking an opioid for pain. Is that a problem". Of the doctors contacted, 40% refused to accept the mother on the basis of the opioid. Another 41% made a first appointment. The rest requested additional information and of that group, only 1 made the appointment. So, basically around 60% of the doctors refused to accept the fictional mother because she was taking an opioid.

[Polar Bear]

Once again I think of the vulnerable person who is unable to push for their needs or to fight their corner and as a result does not receive the care/treatment needed.

Steve, I'm happy to hear that you have an appointment for Wednesday and really hope that she is on the ball.

[fuz_mind]

I am now officially between a rock and a hard place when it comes to medical care.

In addition to my RLS, I also suffer from occasional migraines. I think that I may also be starting to develop Essential Tremor in my right hand but need to consult with a neurologist on that because I don't want to start self-diagnosing symptoms as they pop up with age.

No neurologist in the town where I live will treat my RLS because I require an opioid. Therefore, I have to drive 100 miles each way to see an RLS specialist at the state medical school. So, I tried to see a local neurologist to treat my common migraines and to talk about the occasional bouts of my shaking right hand. They will not accept me as a patient because I am seeing a different neurologist! And they won't treat my RLS. What is the medical community coming to when doctors can pick and choose patients based upon their situation and NOT because the doctor lacks expertise? I am now left with trying to work with my GP for migraine and tremor treatments and these are both waaayy out of his league even though he will probably try to help if I can provide him with some guidance. So, it is rapidly becoming a situation where it is "Patient, heal thyself".

i hear you and I feel you....

[ViewsAskew]

I came across a report published about 2 weeks ago in US News. They conducted a poll of about 100 GPs in Michigan. They asked if the doctor would accept their mother as a new patient and then added "oh, by the way, she is taking an opioid for pain. Is that a problem". Of the doctors contacted, 40% refused to accept the mother on the basis of the opioid. Another 41% made a first appointment. The rest requested additional information and of that group, only 1 made the appointment. So, basically around 60% of the doctors refused to accept the fictional mother because she was taking an opioid.

That is...so many words come to mind and NONE of them are good. Infuriating. And, just so truly sad.

[Rustsmith]

Update:

I saw a neurologist whose office is in the next town, which is "only" about 50 miles away. What a refreshing change! She knew about RLS, but I don't think that she is totally up to speed with treatment(s). But she was happy to allow me to continue with my current RLS specialist and only handle that part of my care that involves my migraines and the possibility that I am developing Essential Tremor. Although her office is still an hour away, I now have a doctor that I can reference for care in the event that an out of control migraine sends me to ER.

[ViewsAskew]

Happy for that...but still angry at the original issue!

[Rustsmith]

Just after I typed my last entry, I got a call from the Foundation office. As I understand it, the advocacy project is involved with a set of new bills on the floor of Congress that relate to individuals who are legitimate users of opioids who are being denied access to medical care for just that reason. So they were calling to ask permission to send my rant along to Peter (our advocacy leader) in Washington. Needless to say, I immediately agreed.

[ViewsAskew]

:thumbup:

[Polar Bear]

Excellent on both accounts.
Delighted you are happy with your new neurologist and also that attention is being paid to your rant. Should you have to ever speak in this regard....you're the very man.

[debbluebird]

Steve, this whole situation is not good.
It upsets me that the Doctors in this country are refusing patients. My husband saw a "pain" specialist a few years ago. They treated him like he was a drug addict and at that point didn't even know he was taking opioids for pain. He was trying to find an alternate. We never went back.
I've thought about moving back to where all of my family live, but I doubt that I would be able to find a Doctor who would see me much less prescrib methadone for me. This is very upsetting. I am fortunate that my primary care Doctor has no problem with prescribing the methadone. In fact this week she said I could increase my dose again if I want to. Too bad I wouldn't be able to move her with me.

[Rustsmith]

Last week as part of the Foundation Advocacy project, I had an one-to-one, face-to-face meeting with my Congressman. I explained about my problem with finding any doctor in town who would accept patients who take opioids. He admitted that he may have played a role in that because just before I moved here, he sponsored a meeting with all of the local medical CEOs where they discussed the opioid epidemic. He agreed that it was time for another get together with the CEOs and they want me to speak with them about the problems that I have been experiencing. Even he said that it was a pendulum issue and he agreed that the pendulum has swung too far. The meeting will be interesting if it occurs.