Obsessing about comments my neurologist made: aka am I a society sucker, drama queen,

[Panegyric]

So I can’t stop obsessing about my Neurology appointment Monday. My doctor said some things I can’t stop thinking about no matter how much I talk myself down from the proverbial ledge. I think he was trying to give me a kick in the butt of motivation, or something tuff love-ish, without knowing the whole situation since he hasn’t been my neurologist from the beginning. But I had an exam Monday after having a crappy week of the pre-tysabri infusion fatigue/pain/etc, messing up the dates to my appointments for the whole week, and falling on my butt repeatedly all month. Had my infusion on Thursday and my BP dropped to 80/40 immediately after the infusion. this has happened before in a lesser way but seems to get worse every time.
Anyway, since my exam Monday, post infusion and infusion recovery days, came back pretty normal (BOOYAH! I’m proud of that) he referred to some of the issues I brought up at my last infusion and throughout the month and kept saying things like I should be working and living my life and “You’re not disabled!” claiming SSI is calling myself disabled and there is a psychological impact to that (heh like he has to tell me that after the years of psychology and therapy).

That his issue is not about the funds which he’s “not talking about” but that I am labeling myself disabled and I shouldn’t. which I also agree with but this makes me so defensive since I was so hesitant to apply for any services when all this happened for just this reason… until homelessness was on the table and well.. yeah. (also what the hell? he filled out the SSI paper work!)

I had also, previously, brought up the fact that my psychiatrist seems to be prescribing me way too many meds and that I don’t want to take them and don’t think its good for me and that I’m looking for a new one. So he listed everything I was prescribed (but had not yet started taking though he seemed to ignore that part) and continued on his rant about how the psych meds were prob causing me more problems than MS right now. This is probably true but I’m not taking everything prescribed… and I’m not sure he got that or cared for it if he did. Doctors don’t seem to like you regulating your medication yourself even if they think your other doctor is prescribing too much.

What I was trying to explain is that I just fill the prescriptions since I have been without insurance (was during my diagnosis period and months after) and lost *everything* and more paying for hospitals and medication out of pocket for almost a year *(which I now know I should have defaulted on but damn me for doing the right thing heh). I spent all savings and loan money for school paying to be seen when I was blind in one eye and falling all over the place and having seizures.

So now I’m broke, massively in debt, and my symptoms have progressed till I started the tysabri when things started to stay stable (though the symptoms I had aren't going away.. especially the fatigue). So yeah, I hoard meds. I do. I keep them so that if I don’t have insurance one day I don’t have to stop medication cold turkey that could very likely cause me to go completely nuts and can’t afford cause that crap is a gazillion dollars.

So he continues with the fact that my fatigue is very likely depression related since so much is going on (which I can’t deny is probably related. This has screwed up my life. I can’t not be depressed about it. It sucks but uh… my inability to move my arms and legs in the morning is not just depression ). He tells me I have to get it together and push myself and get my anxiety and depression under control. It wasn’t said in a mean way per say and I know he was trying to be all “GO! YOU CAN DO IT!” but he still doesn’t know me well enough and that sorta thing makes me crazy.*

I mean, my bp going to 80/41 during my infusion wasn’t my anxiety and I’m not sitting around saying I’m gonna live off SSI forever… but those are the sorts of reasons my past self used to not take medication at all or never apply for services because I believe I can handle it or should or don’t deserve help… or people will assume I am entitled or dramatic or giving in. *When my friends (who are amazing) came to me to tell me they were fundraising to help me pay bills before I had insurance they approached me with “Ok. Don’t be mad”. Heh. Accepting help is not my forte and once I do it I feel horrible about it forever after.*So yeah, this hit me hard.

I was living in england working on a doctorate at a university I had transferred to when I was all but dissertation. I transferred knowing the GIANT risk I was taking because its incredibly financially difficult to do doctoral studies abroad but my research was based on work at the university I transferred to and as a psych student having to suddenly have an economist as an advisor was pretty useless for my future. So I did that, came home for a wedding the summer after my first year (while believing for the past 4 years that I had Lupus cause thats what i'd been told) went blind and it all went from there and i've never gone back. Now I'm financially and physically incapable of doing so and i'm trying to get myself together enough to be able to grieve my past life and move on to new career plans, life plans, etc that include MS.

SO. now Im obsessing, I can’t talk myself out of thinking he assumes I’m making stuff up for meds (he also told me to stop taking my adderal completely which isn’t working out so well… I don't take much at all 10 mg in the AM and another 10 mg in the afternoon if I need them) being lazy and over dramatic, giving in to depression and anxiety, and trying to take advantage of the system. I know this wasn’t his intention necessarily and he doesn’t quite know all the details, but I’ve been struggling with where to go from here now that I’m able to pay for food and sustain life somewhat (got SSI 2.5 mo ago). I don't know that my diagnosis and dealing with the reality of giving up on my life goals and the path I’ve been working towards for years and years really hit me until I was not busy 24/7 working on paper work and figuring out how to get myself to a place where I can survive.

Figuring out what to do with my life now, within my means which are different now, has been the crevasse under me the whole time when I was too busy trying to grab on to the cliff. Its hard! Its been 2.5 months since I got on a medication that works and got some sort of resource that allows me to keep a roof over my head and buy some food heh! Is it wrong that i'm not all figured out?

Blah. If you actually read all of this I’m sorry. I sound like a whinny person I know. Which I am I guess. *But if there is one thing I agree with that my doctor said its that Anxiety really screws you up.*And now I feel like I'm doing everything wrong or not doing enough.

he had me stop the adderall completely this week to make a point. I tried. I've been trying. yesterday I had so much trouble getting myself physically moving and out of a serious cog fog that i tripped over a cord by my bed, fell on the floor, and never made it to the bathroom I was trying to reach to begin with. So I sat half laugh half crying in my own urine for about 40 minutes before I could get myself back up.

I guess I just don't know what to take from this or how to interpret what he was saying to me. i have turned back to my art work, in the interim, since its always been my true passion. It doesn't pay right now and works for me because I can set my own schedule. I have had a great relationship with my neurologist till now… but this threw me for a loop. I feel like I'm trying so hard to get myself back in order.. but is that I'm not doing enough?

I was a doctoral student in Psychology so I know all about learned helplessness and the like. but as someone who lives alone, has no one to help me in pretty much every case, I'm not seeing how that applies. I do everything myself… I just get tired, and my depth perception and fatigue just don't go away.

So yeah, here is a GIANT word vomit for you all. If any one has any thoughts on this let me know. Even if you want to tell me my docs right and i'm lazy. I just feel too much in my own head to know if I am doing something wrong here.. not that I think there is anything more I could be doing without causing myself physical harm and/or ending up on a salu-medrol infusion.

theres a great community on Tumblr for anyone thats interested. you can read my blog at http://chronically-something.tumblr.com (but its long and wordy and obnoxious like me so be warned hah.)

any thoughts would be appreciated.. I don't want to give in.. but I don't know how I can fight harder!

[Mynamegoeshere1]

All I can say is wow at your dr

[Panegyric]

thanks for reading that whole giant word vomit. hah. I just waver between he had good intentions, what the hell is wrong with him, and I'm screwing up here. thanks for listening (reading) me vent.

[Kalliope]

I hesitate to even type this but here it goes-I looked up the word disabled. It says-1.(of a person) Having a physical or mental condition that limits movements, senses, or activities. I don't know about you, but this describes me. I don't like to think of it that way but reality is what it is. It doesn't mean I'm worthless now because I'm disabled. I actually looked up the word worthless-it means 1. (adj.) without worth; of no use, importance, or value. This doesn't describe me or you or a disabled person.

I am a responsible, creative, funny, caring woman, wife, mother, friend, sister, the list goes on and on. Disabled is just yet another part of who I am. I'm in no way limited to just being disabled. From what I read, neither are you. I don't even know you but could see you are artistic, intelligent, have a sense of resposibility and are as independant as you can be. Imagine what else you could add to that list!

I've been working on paying medical bills for quite a while and still have a ways to go. I feel like these people helped me when I needed it, in a couple cases literally saving my life, so now I need to do my part. There isn't anything wrong with having a sense of resposibility and wanting to be independant. I applaud you for it, but there is no shame in asking for help. (I struggle with this myself) Would you help someone in need? Then ask yourself if your in need, why don't you deserve the same help? I'm happy your friends were there for you.

A person with this disease needs time to say "this sucks" but still manage their disease the best way they can, keep learning about it, look for new things that help make it easier. At the same time, there has to be more than MS. There is still fun to be had. My life has changed so much from what I had planned. Plans change-that's for sure! I've had to replace them with new ones.

As far as your doctor, maybe he isn't understanding the impact of what he said and how he was being perceived, maybe he thinks he's motivating you, could be that he has a horrible bedside manner or is just mean.

Please don't take anything I said as preachy. I didn't mean for it to be. You have been through a lot. Have the doctors tried any relaxation techniques to help with your anxiety? I hope for you-the best of everything.

I second what Kalliop said, he may have been a pain in the behind. It sounds like he took time and tried to listen to you.
Maybe even encourage you, if not I apologize.
It's not "what" we are now that matter's OR what we "could" have been.
This is the Choir here... so to speak.. sounds like he has the meds for the ms going well.
We take some time to mourn, then move on. I wish you the best in working with the other dr. It's frustrating I know.

[maitrimama]

Gosh, I hear frustration and defeat in your voice, both of which I can relate to. MS and auto-immune disorders in general are far from being black & white, that being said, each doctor's view is subjective and it sounds like your Dr was in the tough love mode. As for me, positive support and education work better. I am glad you have supportive friends in your life.

One thing you said about your Dr really bothered me...that your Neuro took you off a med prescribed by your Psychiatrist?! My Psychiatrist would have a fit, that is arrogant and presumptive of your Neuron. One Dr making a change in another Dr's Rx has got to be proceeded by a phone call at the very least! Okay, now that I have that off my chest =) not all dr's have great bedside manners but it is important that your dr's work together and you have support coming from somewhere.

[mjan]

{{{{ PANEGYRIC }}}}

Hugs to you my dear. Your post was heartbreaking and SOO familiar. Ok, maybe your neuro' s intention was good, gulp, but still..where's the compassion!! He also probably did not want you to think you are stuck with "being disabled" so do not even mention (at least in front of him) LOL

I agree he should not discontinue a psychotropic med w/o out consulting that psychiatrist (or anyone else).
How would he feel if it were reversed?

But dear, I wish you lived near me. I would offer you my spare bedroom, as living on SSI is not enough to live on. AND before hand..not having any $$ and remaining hopeful is a test in itself. Having your basic needs NOT met, is stressful for ANYONE!!

My concern however, is that some med/meds are tripping you up literally!! I know MS =cog fog, falling etc, but med interactions can make it worse!! Trust me I know. I too am "disabled" but now fighting my LT disability for terminating me stating I am no longer. Just collecting all the doctor's reports, letters, and writing my account of how MS and several other disorders affects my daily life. I no longer can do what I love!! It would be so dangerous and wrong ethically and morally to try to help others with such a messed up brain!!

I am so hot and bothered by what you've been enduring AND trying to pursue your PhD..amazing!!

My hope and prayer is that you will improve and be able to pursue the education/career you are intended to complete!! AFter all its your calling right?

So know that my email is posted in my profile if you care to write, I will certainly offer more support! I mean it ok?

Warmly, Jan

[Panegyric]

Thank you all for the support. None of you sounded preachy to me or anything like that. I live alone and don't have much family so its nice to have a place like this where people understand and can share their perspectives openly.

I am definitely still struggling but I can't say I'm not a bit over sensitive about some things related to my life at the moment. I think perhaps you're right Kalliope and Cindarelly, he doesn't really know the details of the financial impact and extent of the life change I'm going through. I've been trying hard to find a new plan and in the interim focusing on my artwork (which is my heart and soul) and its potential in my future.

He's been a great doctor so far. I am a bit easy to recoil at comments about anxiety and depression as well as comments about my need to access resources. Prior to switching to him I had a neurologist that would not acknowledge any of my symptoms, even the optic neuritis, and I was untreated but diagnosed for a long (which I later found out was because of the type of insurance I had acquired). So this makes me afraid that I'll be back to square one with doctors.

Anyway, I agree, Matrimama, that it was weird to have me just stop a medication like that. I think that was sorta the part that made me think he was judging me in a way I didn't like. The fatigue is so real and different than any depression or anxiety symptoms I've known and I know its probably partly his idea of motivation partly trying to understand how my fatigue is reacting with other psych symptoms maybe? Im not sure but its been pretty detrimental to my productivity so far and my physical health. never fails that I am collapse worthy by 2pm even with morning adderall but without it I just end up.. well like I described in that extra TMI part of my previous post. hah.

I can't thank you all enough for your responses. I guess I realize that I need to sit down and have a long talk with both my Neuro and my psychiatrist and try and get on the same page with all of them. I fear he had the opposite affect of what he intended. I am definitely frustrated but I'm trying to take the good from the conversation and leave the bad behind since well.. its just not useful for me to hold on to (easier said than done tho hah)

Thanks again,
nicole

Kalliope, I have tried some guided meditation and yoga when I can. The guided meditation has been very helpful with my insomnia.

I guess I did not think it was strange that he pulled it without a consult is I have had it done before. In a way it sounded like you asked him to go over the meds.. I would call him and tell him you felt better on the Adderell.(sp)


Good luck with it all, it is really hard to work with so many meds. But, what choice do we have sometimes !!

[Panegyric]

Originally Posted by mjan

[CENTER]Hugs to you my dear. Your post was heartbreaking and SOO familiar. Ok, maybe your neuro' s intention was good, gulp, but still..where's the compassion!! He also probably did not want you to think you are stuck with "being disabled" so do not even mention (at least in front of him) LOL[/COLOR][/SIZE]
...But dear, I wish you lived near me. I would offer you my spare bedroom, as living on SSI is not enough to live on. AND before hand..not having any $$ and remaining hopeful is a test in itself. Having your basic needs NOT met, is stressful for ANYONE!![/SIZE]
[/LEFT]

Thanks for this, It means a lot. Its been hard and I guess I just got too defensive for my own good when thinking about what he said. It built up and I felt like I was doing well getting things together.

Originally Posted by Cindarelly

I guess I did not think it was strange that he pulled it without a consult is I have had it done before. In a way it sounded like you asked him to go over the meds.. I would call him and tell him you felt better on the Adderell.(sp)


Good luck with it all, it is really hard to work with so many meds. But, what choice do we have sometimes !!

Thanks! and you're right we do. I was asking him to go over the meds. You're absolutely right though I should call him and tell him I feel better on it.

On another note, seems I may be in another bit of a jam. Doc's office just called to tell me I'm allergic to Tysabri and thats why my BP dropped and possibly a reason for some things that happened in the past month. Now they want me off it. More decisions, more meds, ugh. Gotta chin up tho!

[muse_7]

I think that sometimes even we forget that doctors are just people that are supposed to be more educated. He may have read about your fatigue but I don't he really knows what MS fatigue feels like.

And it doesn't matter if the fatigue is from depression or MS, if you are fatigued you are fatigued. And the adderal was helping you. I am not a big proponent of meds at all, but if it is helping you then you need to talk to him about reinstating the prescription.

Good luck to you and don't ever feel bad about venting. It is a form of protecting your mental health.

[kingrex]

Originally Posted by Panegyric

Anyway, I agree, Matrimama, that it was weird to have me just stop a medication like that. I think that was sorta the part that made me think he was judging me in a way I didn't like. The fatigue is so real and different than any depression or anxiety symptoms I've known and I know its probably partly his idea of motivation partly trying to understand how my fatigue is reacting with other psych symptoms maybe? Im not sure but its been pretty detrimental to my productivity so far and my physical health. never fails that I am collapse worthy by 2pm even with morning adderall but without it I just end up.. well like I described in that extra TMI part of my previous post. hah.

Adderall is an amphetamine, approved only for the treatment of Attention Deficit Disorder and narcolepsy. You don't seem to have been using it for either of those indications, so it's appropriate for your doctor to eliminate it, especially since I believe you yourself said that you felt you were over-medicated:

Originally Posted by Panegyric

I had also, previously, brought up the fact that my psychiatrist seems to be prescribing me way too many meds and that I don’t want to take them and don’t think its good for me and that I’m looking for a new one.

Adderall is also contraindicated in combination with certain anti-depressants; are you taking any of those?

I'm generally more disenchanted with doctors who over-medicate me than with those who treat me cautiously, with respect to drugs. FWIW, IMO this doesn't sound like a bad doctor.


rex

[NYJenn]

Physicians can be arrogant.

If possible, try to get a new neurologist.

[Panegyric]

Originally Posted by kingrex

Adderall is an amphetamine, approved only for the treatment of Attention Deficit Disorder and narcolepsy. You don't seem to have been using it for either of those indications, so it's appropriate for your doctor to eliminate it, especially since I believe you yourself said that you felt you were over-medicated:



Adderall is also contraindicated in combination with certain anti-depressants; are you taking any of those?

I'm generally more disenchanted with doctors who over-medicate me than with those who treat me cautiously, with respect to drugs. FWIW, IMO this doesn't sound like a bad doctor.

rex

well I was diagnosed with ADD many years ago but I as also told I had lupus. And I am absolutely with you because I hate taking medication and It was a big issue for me with the MS diagnosis began. I didn't start taking the Adderall for ADD till my fatigue issues got really bad and before they figured out I had MS. I don't think he's a bad doctor. I never said that. I just felt uncomfortable with the way certain things were said and like I said I'm oversensitive. He's been fantastic to me and I am not switching doctors or anything like that. Its just hard when you feel you're working hard to keep your head above water and think you're doing well, and have someone imply otherwise (even if thats just the way I interpreted it). Sometimes you need to talk out your anxiety and sensitivity before you can move on.

[muse_7]

Adderall, Provigil and Nuvigil are all only FDA approved for narcolepsy and/or ADD. But they are also regularly prescribed off label for fatigue. My neuro prescribed Nuvigil for me but not only did it not give me energy but either it reacted to me or my wellbutrin and made me suicidal. I take Amantadine now which is another off label prescription. Absolutely no problems with it which is why I still choose to take it.

It sounds like you aren't doing well without the Adderall. But only you can make the decision if it is helping you or not and if it is worth taking it if you are trying to eliminate medications. I just didn't want you thinking that it was inappropriate to be taking it for MS fatigue.