I’ll shut up after this 😐 The example I mentioned in my question was to a Mon. morning follow up with the PCP after an ER visit. I had a temp that rose to 105 Fri afternoon despite taking Tylenol and Motrin myself. It wasn’t lowering even in the ER with them giving me those meds. I also had very low blood pressure which they were concerned about. Between the 2 and some initial blood work, they were talking about admitting me. I begged to let it play out a little more and thankfully the fever finally dropped a few hours later but the BP was still low. Mon morning, as instructed, I called my PCP to follow up. After I said how none of that made sense, she said girl I first talked to wrote it down wrong. Maybe she did, but that still doesn’t explain why I was told the dr reviewed and said what they told me he said because he would have seen the ER notes about low BP. So my point was how frustrating it is when you need something in the moment and it’s not getting relayed and/or someone other than the doctor takes it upon themselves to determine what’s done. End rant 😬

@A MyMSTeam Member - That is such a great question! When it convenes to them complying it’s not okay to call them out on it, but if we aren’t we’re made to feel like we’re the problem!? After a relapse last winter wherein I called the doctor a few times throughout it, yet nothing was done and no appointments available, I was so drained by the time I saw her and at my wits end (funny, they suddenly called and were able to get me in the day after my already scheduled MRI which showed I wasn’t making it up). In a moment of anger and frustration I said “maybe I just shouldn’t take anything”. Then I got discharged from the practice, although it turned out to be the best thing so far because my new doctor has been a godsend! You hang in there too :)

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A MyMSTea...

@A MyMSTeam Member - you're definitely not alone. Honestly, I was so pissed given the lack of timely and accurate communication from both the prescribing doctors and the insurance companies (I was in the process of changing insurances so it was a complicated issue I guess) that I seriously considered going off treatment. You would think these two parties of all people would understand the seriousness, but no..... My DR told me not to worry, that a couple days off treatment wouldn't matter. Makes me wonder why they say the exact opposite! Is it just to get us to be on something that costs a lot? Grrrr...... Hang in there!!! At least we have this great community who understands to vent to! So thankful for this network. XX

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A MyMSTea...

I feel your pain! I had a similar issue last month where their misunderstanding (ie. their inability to actually read the message to see what was going on!) resulted in my prescription getting refilled late so I had to skip a couple days of my Tecfidera, which I was NOT happy about. (Thankfully didn't have any adverse reactions like some folks have had. But all in all it took 12 days to get the issue resolved!) I just kept messaging them (I'm sure I was super annoying, but I find I don't care as much about being annoying since my diagnosis!) and eventually they got it right. I like that there's a paper trail of messages so that next time they send me one of those annoying surveys I can tell them to check the messages for details to support my dissatisfaction. Hang in there - hopefully we'll see some improvement with this sort of thing soon - it's super annoying!!!! XX

I don't know what you could do except make an appointment with the dr and keep. Notes on what is happening and tell him.. Sounds like he needs to shake his staff up,, it could become dangerous to a patient!! Just my opinion!!