Monday, February 11, 2013

Update 2/11

The on call neurologist at the practice where my specialist is, fit me into an appointment late in the week.
This piece of shit was something else. We started out by going over drug history. Went into detail of my issues/experience with Rebif and discussed Gilenya.

He kept leaving the room for 10-15 minutes at a time. I could hear him coming in and out of rooms down the hallway.
He proceeded to lecture me on how bad marijuana is and that I have to be on a DMD.
He followed up with informing me what my fucking options were... he started telling me about a fucking drug called Rebif!!! and then talked to me about Gilenya as an alternative to injections (!!!!). I could have hit him.. wasting my fucking time, he didn't listen to a fucking word I said. There were a couple more issues that I don't feel like going into the mundane details. It was a shit visit with shit doctor.

He said that I should be on steroids asap but before he could prescribe IV/oral I would have to do the blood work..
Since I am a mental case pussy piece of shit, I almost passed out and had to pull the fucking plug. The needle phobia is still very much there.
I fucking hate myself.

Without the blood work he wouldn't start me on any steroids. On top of that they canceled my April appointment to see the specialist stating that I could not see more than one doctor there. Well no shit, I only saw this prick in the emergency. The two doctors have to sign off on a patient transfer. Have not heard back yet about getting rescheduled with the MS Specialist.

I walked out of that place at my lowest.
I called my old neurologist and notified them of the situation and to see if I could get an oral steroid script.
The office called back the next day after 6pm, I was forgotten, but a PA remembered me on the ride home.
Got my script called in and started yet another round of Prednisone.

Each round/tapper on Prednisone has been different . The first couple times it seemed to really help, last few, not so much.
This time it's making me a bit drowsy. Makes my stomach upset for a few hours and leaves me feeling hungry (taken with food as directed).

Two days into Prednisone and I can now move a few toes on my left foot where I couldn't before. I hope that is a sign of being on the upswing. Time will tell...

I had not informed my family about recent exacerbation but I told them this week. I got shit for that.
I confided in my sister more than I ever had about this shit..I created an updated timeline for the doctors and she asked for a copy which I provided (
She was upset that she didn't know about most of the issues because I had kept to myself but says she understands. She knows who I am and how I have always been. Lack of transparency is not a surprise.

I have to figure out this blood work bullshit. I have to get it done. Man up you dumb fuck.
I have been drinking this week. Bouncing between whiskey and rum. I am in so much pain, and I just want to take it down a notch. I have no drugs for pain and no pot to smoke. No relief and the liquor is the best I can do.
Drinking here and there but only a couple consecutive nights. I dislike it enough to know this will not be an issue.



  1. They CAN NOT do that!! They can`t cancell your apointment with the specialist! That is not health care, they are making people more sick!!
    Of courde you must go to that apointment!

    I am glad you told your siste more than before!!! I hope you keep doing that. Glad you got your prednison. And don`t hate your self! Specially not for the needle-problem. EVERYONE have something they are scared of. I am scared of people not liking me, I`d swap it with a needle phobia any day. But then again....that is bacause I don`t need needles.....

    Love you a lot!

    1. We are at their mercy.
      I am still working on getting it fixed.
      Take care.

    2. Thinking of you!

  2. I wish I had words of wisdom to help you. I've been lucky to both live near Hopkins and have a nurse there for a wife. Her contacts were awesome when I was hospitalized for a couple of weeks early on in my MS diagnosis. I was also lucky enough to have a mom with high up contacts in Oncology due to her Cancer research. They were following my treatments through my mom. My diagnosis as I wrote near the time:

    The hardest part early in the MS diagnosis cycle is knowing which questions are important. My advice would be to think of what your real questions are. For me, the question wasn't which treatment is safest. The question was and remains which meds are most likely to let me live a life closest to my pre-MS life. My choice was give me 5 good years over 30 crappy ones. So when Copaxone failed, I jumped at the chance to take Tysabri.

    As for the solumedrol, can they put in a port and give you an IV poll for home? Then you don't have to stay in the ER. My insurance sent a nurse to my house to set me up with instructions for whom to call if any thing went wrong. It is far cheaper for them, and it was far more convenient for me. Then you only have the one needle stick for a few days.

    Second suggestion, have you or your doctor thought about Acthar? I've never used if for treating a flair, but there are quite a few people who have said it works on I am a big fan of this site as gives some effectiveness information from the patients perspective. For what it's worth of the roughly 500 patients who reported taking Acthar, only roughly 10% stopped it because it wasn't working.

    Good luck, and let me know if there is anything with which I can help.

    -The Life Well Lived

    1. They offered in home IV steroid treatments, but getting the blood work was the only hang up.
      I was actually excited to hear that was an option since it would be a lot easier.
      I am working on this needle thing.

      I have heard of Acthar but not taken it. I will look into it more.
      Thank you for the links.

  3. Glad you are getting something hope you're upswing continues, toes were my first improvement being able to separate them and w wiggle them felt good. ..
    . Small battles but it's what keeps hope going. .
    Can they give you something to help with the needle issue without it affecting the result of the Bloods, I don't know a seeds sedative or something. ... iv poll for home sounds good of you can get t through one needle. ..
    P. take care. ..

    1. I am working up the courage to just go in this week and get it done regardless. Has to be done.

      I have considered using meds to get through it but I don't use them to get through the day as it is.
      Thanks for writing

  4. How are you my friend?
    I was thinking; could you not try ldn?

    Or vit D?