Thoughts?

[Skidder]

I was diagnosed with PPMS a few months back. They can't prescribe any DMTs and such, but I have my third appt next week. Is there any value to the appts? If they can't do anything other than try to address symptoms, then isn't "us" notifying them of a significant change for evaluation enough?

I don't want to go to endless appts if they're just going to ask how I'm doing. They have an online app for patients where we can contact our doctor. I don't want to blow off appts if they are worth it, but don't want to keep going so they can make a car payment. It's an hour each way and an hour I don't want to waste.

I mean, the reality is I'll let them know if I need papers filled out for disability, or want to know if they have something for a new symptom. I don't need a prognosis in several years. I know what I'm dealing with today which is good enough.

[AriD]

I completely get what you are saying. Doctors appointments can be a hassle especially when you don't see any benefit. Examinations, though, can sometimes find new issues that may be able to be treated with medication, PT, etc. how often are you going? Maybe you could space things out a bit. Do you see many different doctors? I can't keep up with the number of referrals and doctors appointments I have. Three more added this past week. It is too much. Talk with your doctor about it and see if you can work out an easier plan. Take care.

[Skidder]

Tks

I completely get what you are saying. Doctors appointments can be a hassle especially when you don't see any benefit. Examinations, though, can sometimes find new issues that may be able to be treated with medication, PT, etc. how often are you going? Maybe you could space things out a bit. Do you see many different doctors? I can't keep up with the number of referrals and doctors appointments I have. Three more added this past week. It is too much. Talk with your doctor about it and see if you can work out an easier plan. Take care.

I go to the MS Center at Barnes in St. Louis. One of the best. I see the doctor every other visit and the next is with the PA. I also (am supposed) to be seeing a urologist. Then there's my PCP. The aggravating part is prescriptions good for a year and then another visit. I have to see three separate doctors for all of my meds which are all for the same underlying issue. Urologist for bladder issues. PCP for others and then my MS doctor for Baclofen.

I guess my attitude is one doctor to prescribe them all. The meds can all be managed in a single visit. I know if they're working. If so, then renew. The bladder and bowel has a lot to do with the MS hug. It doesn't treat BPH. Each time one expires, it's nothing more than an appt to ask how it's going.

Throw in that I'm all about quality of life, not quantity. I don't want it prolonged to endure the worst MS has to offer. Prescribe the meds that work for what my goals are. I go to the MS Center every two months or so. Once a year seems adequate unless something develops. Email is good enough to ask if there are changes.

[Karenkay]

I agree with you. I think the quantity of appts is more of a CYA measure for them than anything beneficial for you.

[J-Bo]

I go every 3 months

They are prescribing me high-dose biotin, and I suspect that they want to see how it's working out since it's a fairly new treatment. I'm ok with that, even though it's a 2 1/2 hour drive. I went today, as a matter of fact. It was worth it, just to learn that Ocrilizumab might get approval as early as June. I have not seen that info anywhere else. I hope it's true.

Also, the doctor suggested that I try provigil for fatigue, which I would not have thought of because my fatigue is from taking methadone for pain management rather than MS. But maybe it will help, and that would be worth having gone today too.

[AriD]

I know skidded. How many different doctors do you have to see for same main issue? Right now I see pcp, MS neurologist, neuro ophthalmologist, otoneurologist, sleep specialist, and urologist. The first three every 3-6 months. The next three still doing work up so frequent visits and tests. Now have to see orthopedic for hip issues related to steroids. Then I see dermatologist for skin cancer every 6 months and PT off and on. Really? I need four different neurologists. It's crazy. Specialists on top of specialists. Fills your whole calendar. I'm afraid something will be missed that may give me a better chance if I don't follow through. Overwhelming though.

I do, sometimes, cancel an appointment if I feel like I don't need anything from that particular doctor at that time.
Can you talk to your doctor about this and see if there can be an agreeable spacing of appointments? It doesn't work with mine but my schedule is so crazy sometimes I have to space them out more to fit everything in plus work and other commitments.
Good luck. I'm with you on this topic.

[Skidder]

I agree with you. I think the quantity of appts is more of a CYA measure for them than anything beneficial for you.

I often wonder if I should ask them and if they say it's for them to track, then tell them not to charge me for the visit. You read about not letting it control your life and living the best you can, but as we all know, each day can be challenging enough without maintaining a schedule for the appointments.

I know they're as frustrated by this as any of us, and really do want to help. I also accept they need us to find a cure or something to help. Kind of feel like a guinea pig more than a patient at times.

[Marie12]

Hqppy Birthday - C Dustin (62), Valentine (59), Wanda June (59); I'll b 59 in March,

C Dustin (62), Valentine (59), Wanda June (59),

[jreagan70]

I often wonder if I should ask them and if they say it's for them to track, then tell them not to charge me for the visit. You read about not letting it control your life and living the best you can, but as we all know, each day can be challenging enough without maintaining a schedule for the appointments.

Hi Skidder:

You asked for thoughts. Here are mine.

It sounds like you’ve thought this through to the point that you’ve gone beyond reason, come out the other side, and are now looking at the situation backwards.

As a patient, you started the game by going to your doctors and asking them for their expertise in solving a problem. That action put your doctors into a position of responsibility and obligation to perform due diligence to fulfill their side of the relationship.

And now you’re criticizing and blaming your doctors for doing exactly what you told them you wanted them to do.

“Yeah doc, I know I told you I wanted you to be my doctor and do everything that entails, but if you do what I asked you to do, you can’t actually see me to know what’s going on anymore or charge me for it anymore because I’ve become bored with the whole situation.”

It isn’t your doctors’ fault that your life is challenging. They aren’t doing anything to you. They’re doing things for you because you said that’s what you wanted. Blaming them because you got what you asked for shows where your thinking has gone off the rails.

It’s OK to change your mind about what you want as situations change. But you are responsible for the choices you make.

As patients, we have no control over the doctors' side of the relationship. But we have complete control over the choices we make, even if we don't like the trade-offs involved.

It always amazes me how many people with MS give their power away through passivity, then complain about feeling powerless. Blaming means giving power away. So if you stop giving your power away through frustration and blame, you might be amazed at how much power comes right back to you and how quickly that feeling of being a guinea pig goes away.

[Karenkay]

C Dustin (62), Valentine (59), Wanda June (59),

Did you mean to post on this thread??

[Karenkay]

I often wonder if I should ask them and if they say it's for them to track, then tell them not to charge me for the visit. That's not gonna happen. You read about not letting it control your life and living the best you can, but as we all know, each day can be challenging enough without maintaining a schedule for the appointments.

I know they're as frustrated by this as any of us, and really do want to help. I also accept they need us to find a cure or something to help. Kind of feel like a guinea pig more than a patient at times.

I wonder if they are frustrated with my disease or with me. I definitely agree with the guinea pig patient theory.

[Thinkimjob]

Hi Skidder:

You asked for thoughts. Here are mine.

It sounds like you’ve thought this through to the point that you’ve gone beyond reason, come out the other side, and are now looking at the situation backwards.

As a patient, you started the game by going to your doctors and asking them for their expertise in solving a problem. That action put your doctors into a position of responsibility and obligation to perform due diligence to fulfill their side of the relationship.

And now you’re criticizing and blaming your doctors for doing exactly what you told them you wanted them to do.

“Yeah doc, I know I told you I wanted you to be my doctor and do everything that entails, but if you do what I asked you to do, you can’t actually see me to know what’s going on anymore or charge me for it anymore because I’ve become bored with the whole situation.”

It isn’t your doctors’ fault that your life is challenging. They aren’t doing anything to you. They’re doing things for you because you said that’s what you wanted. Blaming them because you got what you asked for shows where your thinking has gone off the rails.

It’s OK to change your mind about what you want as situations change. But you are responsible for the choices you make.

As patients, we have no control over the doctors' side of the relationship. But we have complete control over the choices we make, even if we don't like the trade-offs involved.

It always amazes me how many people with MS give their power away through passivity, then complain about feeling powerless. Blaming means giving power away. So if you stop giving your power away through frustration and blame, you might be amazed at how much power comes right back to you and how quickly that feeling of being a guinea pig goes away.

Okay, fair enough.
What happens, though, when you genuinely are powerless? Can't walk, can't drive, can't wipe your own butt? Where's the power?

The only power I have is to keep trying. I'll do that for as long as I can.

And I'm not so thrilled with the drugs. You go to a doctor because you are sick.
You kinda hope they might make you feel better. Or at least tell you the truth.

Doctors have been like strippers popping the balloons one by one until the bare naked reality of MS stood there. It was me in the mirror.
Not standing, either.

[palmtree]

I was diagnosed with PPMS a few months back. They can't prescribe any DMTs and such, but I have my third appt next week. Is there any value to the appts? If they can't do anything other than try to address symptoms, then isn't "us" notifying them of a significant change for evaluation enough?

I don't want to go to endless appts if they're just going to ask how I'm doing. They have an online app for patients where we can contact our doctor. I don't want to blow off appts if they are worth it, but don't want to keep going so they can make a car payment. It's an hour each way and an hour I don't want to waste.

I mean, the reality is I'll let them know if I need papers filled out for disability, or want to know if they have something for a new symptom. I don't need a prognosis in several years. I know what I'm dealing with today which is good enough.

I have felt this way many times. I've finally started telling them, "I'm trying to cut back on the number of doctors visits so I can have more time to socialize, exercise and adjust to this diagnosis". When approached this way my doctors have been more amenable to stretching out the appointment schedule.

It's about money all right. 'I will give you refills on your Baclofen if you come into my office so I can get paid.' Being the good patients that we are, we are herded through the medical office and walk out with a card in hand confirming our next appointment. No explanation as to the reasons for the appointment and no opportunity to ask.

But you are right on when you question the validity of the appointments. You have to come in so they can get paid. Reason for visit: none.

[Skidder]

Hmm

Hi Skidder:

You asked for thoughts. Here are mine.

It sounds like you’ve thought this through to the point that you’ve gone beyond reason, come out the other side, and are now looking at the situation backwards.

As a patient, you started the game by going to your doctors and asking them for their expertise in solving a problem. That action put your doctors into a position of responsibility and obligation to perform due diligence to fulfill their side of the relationship.

And now you’re criticizing and blaming your doctors for doing exactly what you told them you wanted them to do.

“Yeah doc, I know I told you I wanted you to be my doctor and do everything that entails, but if you do what I asked you to do, you can’t actually see me to know what’s going on anymore or charge me for it anymore because I’ve become bored with the whole situation.”

It isn’t your doctors’ fault that your life is challenging. They aren’t doing anything to you. They’re doing things for you because you said that’s what you wanted. Blaming them because you got what you asked for shows where your thinking has gone off the rails.

It’s OK to change your mind about what you want as situations change. But you are responsible for the choices you make.

As patients, we have no control over the doctors' side of the relationship. But we have complete control over the choices we make, even if we don't like the trade-offs involved.

It always amazes me how many people with MS give their power away through passivity, then complain about feeling powerless. Blaming means giving power away. So if you stop giving your power away through frustration and blame, you might be amazed at how much power comes right back to you and how quickly that feeling of being a guinea pig goes away.

Thank you everyone for your feedback. At risk of sounding argumentative, and not trying to, it's not about who has the power. Being early on in the process, and learning as I go, I do look at all aspects. I'm big on being productive. If there is a reason for going in person, whether to collect data or other, that's fine. Just to have me show up to check my pulse and to stay in touch, then email works.

[pennstater]

Thank you everyone for your feedback. At risk of sounding argumentative, and not trying to, it's not about who has the power. Being early on in the process, and learning as I go, I do look at all aspects. I'm big on being productive. If there is a reason for going in person, whether to collect data or other, that's fine. Just to have me show up to check my pulse and to stay in touch, then email works.

Hi skidder. Are you new to MSDiagnosis as well, or is the change to PPMS that is new? I would think that your neuro wants to monitor the rate of progression, especially since new diagnosis. This can't really be done over the phone. Is a neuro exam completed? On my diagnosis, neuro wanted to see me pretty frequently, then around 18 months, every 4 months, then later, every 6 months.

Part of it was to make sure I was handling diagnosis OK, was educated and informed, and also see if any developing issues that a different specialist was needed. It is frustrating to have so many appointments, but at the same time, I have to respect each specialist's knowledge.

The CNS is a very complex system. It would be unrealistic of me to expect my neuro to stay on top of latest bladder research/ treatments, just as I don't expect my PCP to know latest MS knowledge. I do expect my neuro to be on top of all the contributions of each specialist treating MS related symptoms, as well as medication interaction, along with any general non-MS health conditions and potential relationship to issues I face.

Just my take on things.