Progress Update: Next Doctor in Line Please

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So I have to admit, I have a lot of anger built up in me right now… I’m so frustrated with the way that our medical system works and I’m so frustrated with dealing with Kaiser. I hate feeling like I am at the same intellectual level as the doctors I am seeing. They may have a little bit more textbook knowledge but when it comes to common sense or thinking outside the box I honestly feel like I am more competent than most these doctors at Kaiser… It should not be that way, that thought, that feeling, should never cross a patient’s mind…

Today once again I woke up in pain and I just knew that there was no way I could go to class and take care of business so after talking with my mom and doing some thinking I decided to drop the class while I could still get a refund because I am just not mentally, emotionally, or physically ready to go to school and actually do well. If I’m going to pay for a class I want an A and right now I know I can’t give it 120% like I should be able to… So I dropped my class and decided that for this summer I’m going to focus on getting control of my health because it’s getting worse and worse pretty rapidly. I called the appointment center and set up a doctor’s visit with whoever I could get in with and even though I didn’t have any hopes of accomplishing anything I still left feeling rather disappointed and frustrated.
This doctor insisted that the cause of my current pain was me stopping my Copaxone and steroids but I explained to him that the pain started about a day or two after I had stopped taking my medication. I have missed doses of Copaxone before and never felt any change in my symptoms. He also insisted that I start taking prednisone again but refused to agree that an IV treatment was necessary. He told me to take the prednisone (40 mg) until I see my neurologist next week and leave it up to him. My impression was that he was avoiding the responsibility of making such a decision even though I already knew what I wanted.
He agreed to write me a prescription for Percocet but he said OxyContin was completely out of the question even though I was not asking for it. Funny, Percocet and OxyContin to my understanding are the same exact thing only Percocet contains acetaminophen and OxyContin is simply a slow release form of the medication Oxycodone which is what Percocet is… He was so against the use of OxyContin but Percocet was not a problem… Maybe I’m missing something here but this just seems a little odd…
I also brought up LDN just for the heck of it and man, he cut me off before he could even finish my sentence with “You don’t need that”. Those were his exact words, “You don’t need that”. Then I pushed it will the fact that it has helped so many others and that there is promising research to support it and that I wanted to try it because none of the traditional treatments including the prednisone he was so desperately pushing me to get back on has helped me so far and I thought it was time to try some nontraditional routes. He ended the conversation with “Well I don’t know enough about that so you will have to talk to your neurologist about it”.
Whatever, I took my Percocet prescription and I left. This is exactly what I expected of a Kaiser doctor. So I’m going to make some calls and see how much it will cost me to visit a doctor who is willing to prescribe LDN and how much the medication will actually cost me without insurance. I’ll then get my LDN and tell my Kaiser doctors “Look, this is what I’m taking and whether you like it or not I will continue to take this medication so long as it’s helping me so work around it”. All Kaiser wants to do is give me prednisone, prednisone, prednisone. I don’t know what’s up with them and prednisone but they hand it out like candy on Halloween. I’m not taking prednisone like he instructed me to do so because that’s a waste of time and money. The whole reason I got off prednisone was that it wasn’t really helping me anymore, it’s bad to take it for a long time, and I wanted all the steroids out of my system so that if I did experience a relapse during the summer I could do an IV steroid treatment and actually benefit from it because last time I had an IV treatment I was already on 80 mg of prednisone so the treatment didn’t do me any good, it just provided me with horrible mood swings because I had already built a tolerance to the steroids. So why would I take such a small amount of prednisone when it’s not going to do anything but get my body dependent on it. 40 mg is not going to do anything at all!
So I’ll get through the next week using my pain medication as sparingly as possible and see what the next guy in line has to say. You better believe I’m going to make a scene if I don’t get my steroid treatment and plasmapheresis. I pay for my insurance so I should be able to get what I want whether they think it’s necessary or not. In October I should be switching insurance plans and will hopefully be done with Kaiser for good! I truly cannot wait!

7 thoughts on “Progress Update: Next Doctor in Line Please

  • June 22, 2011 at 10:15 pm

    Good Grief Matt, you've more than been through the mill there….you're right you know what you need and what you want to take, and most days, the doctors already have made their minds up!!!

    Frustrating and annoying.

    Can't give you any advice on the drugs simply because I don't know…..but I hope you get a satisfactory conclusion to this saga….


  • June 22, 2011 at 10:26 pm

    Thanks! And good point, "a lot of doctors have already made up their minds about certain things" and most doctors don't have a malleable mind, its set in stone…

    Keep on keepin' on right haha

  • June 23, 2011 at 8:58 am

    "You don't need that." Oh, right. Your doctor knows what's good for you. It's always other people who know what you need, right? -.-

    As I said on FB, I don't really think anyone knows what taking breaks from the Cop does – they don't even really know what staying ON the Cop does, lol. I believe you're right about the Prednisone, though; my doctors would never give that to anyone long-term. They're reluctant to do plasmaphereses as well, though; I don't know why. Are there any risks involved? The only case I've ever heard of was a lady who got a plasmapheresis after 6x2000mg of Steroids hadn't changed anything (she had gone blind; her eyesight returned after the plasmapheresis though).

    I'm incredibly sorry you had to drop your class. I know how badly you want to move on from all this crap. :((

  • June 23, 2011 at 6:40 pm

    Its all about money. I don't need LDN because it makes THEM no money. plasmapheresis ? Probably expensive for THEM. If your rich you can be health no problem but for the 99% of us who are not in that boat, well, sorry….

  • June 26, 2011 at 3:11 am

    I'm curious to hear your response to LDN. I assume that you will starting at LDN 3 mg — one at bedtime and then increase to 4.5 mg.

    We are trying to find funding to move forward with research looking at LDN as a disease modifying drug but also as a symptomatic treatment (fatigue etc.).

    Part of the problem in designing a clinical trial to look at LDN will be how to choose which patients should be in it — should people with MS be on a regular medication (the ones already FDA approved) plus LDN vs. regular medication alone? Should it be LDN alone vs. placebo? The design of the trial is important because when clinical trials aren't set up well then it is hard to get good results.

    I am curious if you saw our video at:

  • June 28, 2011 at 11:15 pm

    Logically speaking I would have to say LDN alone vs. placebo so that nothing effects how the medication works and then you could look into interactions later.

    I will keep everyone posted with my progress of course and will keep an eye on you guys, if I can participate in some kind of trial then I would be interested!

    Sorry for the late response!


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