Progress Update: Playing Doctor


So I have been getting progressively worse in the last week or two, my balance is horrible, my gate is off, I am noticing some occasional weakness in my left leg and left arm, a slight loss of fine motor control and coordination in my left hand, and of course there is still all the cognitive junk. I blame this partially on stress but the most logical and obvious explanation for my steady increase of my symptoms worsening would be the fact that I am finally on a really low dose of Prednisone (steroids). I have been slowly tapering down for a while now and that seems to be consistent with my symptoms flaring up.

Since my neurologist isn’t exactly “proactive” with her patients the way she should be I have taken it upon myself to play doctor. I am increasing my Prednisone back up to 70mg over the course of this week, I believe that since I have been on such a slow taper and low dose of steroids in the last couple of months I am hoping that quickly rising back up to 70mg will reduce some of my symptoms. I have educated myself enough to know what I am doing with this medication and have been on it for so long that it is just as casual to me as ibuprofen is to the average over the counter consumer. Besides, I figure I can wait a month to see my neurologist who is just going to do the same exact thing or I can get myself started earlier before things get worse and require a week of IV treatment (Solu-Medrol).
Sad that a patient should even have to consider “self-treatment” but unfortunately thats the way it is with Kaiser, Im not sure how other doctors are but Kaiser is just a waste of time which is why I have to do so much of my own medical research. I don’t trust any of my doctors and none of my doctors really seem to care for me as a patient as much as they care for me as a source of income.

14 Responses to Progress Update: Playing Doctor

  1. jgycay says:

    Don't give up hope. I never have and I also have not gone into remission since my initial diagnosis in July. I get more than frustrated. Half the time I feel as though I'm my own doctor. I can't count on these quacks to do what's right for me. I figured that out when my Neurologist asked me if "I" felt I would benefit from another Prednisone treatment. What the hell…..last time I checked…..YOU ARE THE DOCTOR! I feel your frustration. I'm continually going down that road. Keep your chin up. MS sucks, that is for sure. I feel like a better cheerleading for others than I am for myself. Go figure.

  2. Matt Allen G says:

    "last time I checked…..YOU ARE THE DOCTOR!"

    Lol so true… I don't know if you listen to stand up or not but that reminds me of a comedian, Pablo Francisco, who talked about going to get a haircut and how they asked him

    "what number clipper are you, 1, 2, 3, 4?"
    and he was like "um… I don't know you tell me, YOUR THE BARBER, um…. 2!"



    haha only hair loss is a little more reversible compared to um… lets say… DEATH?

  3. MKAD says:

    I decided to have 4-AP
    I decided to take Azathioprine instead of nothing
    I decided to take Sifrol for my reatlless leg syndrome

    It's too bad we have to be our own doctors… But we can't wait for them forever.

  4. Soph says:

    XD "last time I checked…..YOU ARE THE DOCTOR!" – I'm glad I'm not the only one who has wanted to say that. When I was in hospital over New Year's, my doctor, too, asked me whether I thought it was "a good idea to taper" regarding my latest treatment. Um, sorry, how should I know? Predictably, I said yes, and I don't think many MS patients wouldn't have.

    Personally, I think they just wanted me to take responsibility so that I couldn't blame them should side-effects occur. -.-

  5. jgycay says:

    Soph hit on what I think is true. THEY (dr's) don't want to take responsibility AT ALL! Then give me the damn prescription pad and I'll take care of myself. Idiots!

  6. Matt Allen G says:

    Personally, I think they just wanted me to take responsibility so that I couldn't blame them should side-effects occur."

    Yup, on the dot, they're just trying to avoid RESPONSIBILITY.

    "But we can't wait for them forever. "

    I can't even wait a week! In a week my MS can go from 0 to 100, I email my doctor last week about some issues then at the beginning of this week and still no response and there is no way for me to call my doctor, all I can do is email her. ARG!

  7. jgycay says:

    I've never met a doctor who communicates with their patients via e-mail. That is interesting. Never seen that here in Ohio. That would make me feel very disconnected. I know doctors don't sit in front of a computer to talk to their patients. Seems odd somehow. I know how quickly my MS can change too. What applys one minute is never the same the next. I struggle with my diagnosis ALL the time. I try and try to convince myself I can deal with it but reality I feel very much alone.

  8. Matt Allen G says:

    With Kaiser that's the ONLY way to communicate with your doctors or you can call the appointment center and have the receptionist email your doctor for you….. Yeeeah…..

    You shouldn't feel alone, i know its hard not to sometimes, but there are so many people here online trying to support one another, I know it's not the same as spending time with someone in person but I think the online MS community is as "personal" as it gets because there are so many caring people who can ONLY communicate with other MS'ers online.

  9. Soph says:

    That must be the least patient-friendly thing I've ever heard of. How are you supposed to stay in contact with your doctor if you can't reach them? -.-

    @jgycay re: struggling – I know what you mean. Things get so hard sometimes. And sometimes even all the people online make me feel bad just by being better at coping. :/

  10. Matt Allen G says:

    But its the most profitable way to manage patients… In America, health is a business not an interest… The harder it is for you to get a hold of your doctor the less time they have to "waste" as far as "productivity" is concerned… 'm surely not saying its right I'm just saying that's how it is…

  11. jgycay says:

    I know Soph. I think (for me at least) I can help others cope better than myself. It doesn't make sense. I hide so much of what is ripping me up inside with this disease. Yet offer Matt support for going through my same struggles.

  12. Matt Allen G says:

    That's how a lot of people are, that's how I am for sure, I can help people everyday, give them advice, but I can barely help myself, can't even follow MY OWN advice.

  13. MKAD says:

    "Can't even follow MY OWN advice". So true!

  14. Matt Allen G says:

    Haha hypocrisy is in human nature if you ask me.

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