My Neurologist Doesn’t Believe in Narcotics

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Months and months I waited for this appointment, finally I get in… And….
Well, let’s just say it didn’t go my way… At all… I went in with the following list:

Spastisity
Cognitive – Meds?
Energy – Meds?
Physical Therapy
Zanaflex
Gabapentin
Percocet
Tysabri/JC Virus
MRI’s
Vitamin D Level
You know what? I think the easiest way to explain how this encounter went is to simply go down the list, so, shall we? 
Spastisity: asked about Zaneflex and I think she agreed to that.
Cognitive – Meds?: Nothing can be done.
EnergyMeds?: Nothing that she supports is available.
Physical Therapy: Got a prescription, 1 win, yay!
Zanaflex: I think I got it.
Gabapentin: Got it
Percocet: She does not believe in Narcotics, offered Gabapentin and antidepressants…
Tysabri/JC Virus: She does not like to follow this drug so I will have to see a different specialist, (AKA my new doctor from this point on…)
MRI’s: She does not handle that, have to ask someone else.
Vitamin D Level: She does not handle that, will have to ask primary physician…
So looks like I waited all those months to find out more about what my neurologist doesn’t like to handle than what I can do about these symptoms.. At least at Kaiser I knew how to get what I wanted. So I think I got like, three prescriptions, that was on Thursday, it’s Saturday, nothing has been sent to pharmacy. Apparently she does not like to fill prescriptions either… So looks like yet another worthless neurologist… I am sure there is a good one somewhere out there but so far, in my experience, nope…

I am sick of feeling like no one out there, in any kind of position to help, actually cares. My neuro came in and seemed to want to leave before I could finish one sentence… Good thing I had that list because without it I would not have been able to remember a thing because she kept trying to weasel her way out of the room. I don’t see you in months and months and months and you think you can leave in 2 minutes without asking me a single question? I tell you this, this, and that is wrong with me  and you don’t bother with any textbook questions or tests? Come on, at least pretend like you are here to do your job… I have been doing this long enough to know who is actually doing their job, who is pretending, and who doesn’t care enough to even pretend due to some egotistical sense of entitlement.

It makes me want to just give up sometimes, to feel like you are fighting a war with no one on your side, it is tough. If it was up to the world I would be left in a dark corner with some Gabapentin and Prozac to just slowly die, well, that is how it feels sometimes, most the time… No one wants to make me better but me and me alone. This is up to me, getting better is on me, I have to learn how to get better and how to “work the system” to get what I need to get better because I am on my own. 

So it looks like it is time to start working on the whiteboard to come up with a list of solutions for my list of problems…  Alternative treatments, got to try them all and hope that I can find a way to get that stem cell treatment, I need something because the usual, textbook remedies, don’t seem to be helping me causing my doctors to not want to help. If an issue requires actual thinking it is just too much to ask of these “professionals”… Watch me cure myself.

19 Responses to My Neurologist Doesn’t Believe in Narcotics

  1. Anonymous says:

    Matt,

    Definitely research a better neurologist — the vitamin d level thing is just criminal. You are too sick for that. Get recommendations from others — ask your parents to help you find someone better. The vitamin d level thing makes me so angry for you.

  2. Tony Street says:

    You could come see my neurologist, he's really good, bad there's this stupid thing called distance. I hope everything gets better for you Matt. You should've got irate up in that doctor's office. Make her listen! LOL!!!! 🙂 I hope you feel better. 🙂

  3. Matt Allen G says:

    I don't have the fight in me anymore, so tired, the next neuro I see I have heard good things about from another MS patient so we will see…

  4. Anonymous says:

    Well this makes me angry, can't even imagine how you feel! Can I wish MS on her?

  5. Minakitty says:

    I am very fortunate that I have a great neuro along with her colleagues who are also involved in a lot of MS research. I imagine we live very far apart, and I've just discovered your blog yesterday, but I want the best there is for you. You are too young for this.

    (diagnosed 2005)

  6. Matt Allen G says:

    No, wishing MS on her would only make you more mad because then all of a sudden, she would be committed to beating MS. Plus it is just wrong haha.

    I wish I had a neuro like that, seems like all the good doctors are out of California.

  7. Minakitty says:

    Or in my case, Upstate New York. There are great people fighting for us and I hope you find yours. 🙂

  8. Anonymous says:

    I feel your frustration Matt! I wonder how many ppl here have good docs? I just found one, but took me 2 years!

    sleekcartim

  9. Anonymous says:

    I have Epilepsy. I'm on my 3rd neurologist in New Mexico. In the whole state there are only about 5 neurologists, and they are almost all located where I live. Went today because I have been having more and more seizures. My Phenytoin levels are always extremely low. Today all he said was "I don't know what to do with you. Come back in 2 months". So I feel for you when you get someone who doesn't want to hear what you have to say. I have a lot of medical problems also. Had 2 brain surgeries in 3 days, a stroke, C.Diff, seizures and am on 2 different anti-depressant meds. Am also going to therapy to deal with all of this. It gets to the point to where you feel like you are in a hole and can't see the light.

  10. Matt Allen G says:

    Wow. That is… I couldn't imagine the frustration…

    I have been through so many neuros, I won't deal with the "idk what to do so just take this" attitude, I need a proactive Dr. who WANTS to help me get better not just shut me up….

  11. Anonymous says:

    I am somewhat sad to read about your experiences with docs. I am a doctor who is currently on sick leave after a whopping first go round with MS. It sucks. Many doctors,believe it or not, really do care what happens with their patients. Have you read the book by Dr Terry Wahls? I am trying that along with all the other awful stuff (Interferon after steroids).

  12. Matt Allen G says:

    I have not read the book but I have read into her a lot. The diet I am starting is very similar. No offense meant, but in my experience, all the doctors I have dealt with are more concerned about covering their asses than helping the [patient. "Diagnose and adios" as they say. I am continuously looking for a decent doctor that doesn't get their ego hurt when I show that I have some knowledge regarding the disease I am going to have for the REST of my life…. So I hope that I find a good one soon so I can stop "hating" but again, in my experience, things have been ugh!

  13. Anonymous says:

    To the doc with MS… I suggest you chat with other MSers about docs. you will be shocked how many bad docs there are! I constantly hear poor MS ppl struggling with that, going through MANY docs including neuros. many ppl live in areas with very few neuros, often get stuck with no other choice, but to wrestle with bad docs to get what they NEED. Im on my 3rd neuro in 2 years (Matt has gone thru more), It's scary as hell to learn you know more about MS than your docs (i know matt is raising his hand)! FINALLY i smartened up & got with a GOOD MS specialist neuro, you better do the same! P.S. dont be afraid to try homeopathic, alternative stuff!

    sleekcartim

  14. Anonymous says:

    I am unfortunately not that shocked that there are "many bad docs out there". I have a good MS specialist neurologist. I saw the top two in our state and then picked the one whose long term treatment plan seemed the most promising to stay with. But I agree you have to be your own advocate also. I strongly believe a physician should be their patients' advocate as well and I wish you had had better experiences. Since I was only recently diagnosed I have not yet spoken with other MSers – this is my first attempt. What alternative,homeopathic stuff? I am already on that "everything free" diet and a ton of vitamins,omega3,D,antioxidants with promising results in previous trials. From no pills to more than I can remember…

  15. Matt Allen G says:

    Supplements
    Best Bet Diet
    Soon acupuncture
    HOPEFULLY stem cell therapy…
    Exercise of course…

    Western medication is making life just as hard. I can help my spasticity in exchange for barely being able to keep my eyes open you know?

    I need Dr. House haha…

  16. Anonymous says:

    Why have they not put you on Tysabri yet?

  17. Anonymous says:

    Mt neurologist says Tysabri is the most potent anti-inflammatory on the market for MS currently. It unfortunately carries the risk of inducing a fatal encephalopathy. But this seems to occur only very rarely and only in patients who carry the JC virus.He tells me he wants to get me on this drug ASAP as the goal is to "prevent neuronal death and ongoing damage". Tysabri is only approved as a second line drug currently by insurance companies. For that reason I am doing a short period of Interferon-But the plan is Tysabri which has the best outcomes. I tested JC neg. so I will take Tysabri and intermittently recheck my JC virus status. If I had tested positive I still would have gone on Tysabri for 6 months-none of the patients who developed PML had been on Tysabri for less than 6 months- with the aim of transitioning to BG-12 a new oral agent which should be FDA approved next year and has a lot less toxicity and is more effective than Interferon by a lot. Have you tried Provigil(modafenil) for your cognitive "fog" and fatigue? It might help. Expensive here but Canadian pharmacies carry it cheaply.

  18. Matt Allen G says:

    I want it now but the neuro "doesnt handle that" so she said to go to this other neuro…. UGH!

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