My Neurologist Demands I Cripple Myself

[Jackie_Cochran]

I apologize for the novel.

I have MS. I was diagnosed in 1993. Since then I have tried 3 MS drugs, Betasaron, Copaxone, and Gilenya. Betasaron disabled me (I was working full time, 60 mile commute, feeding and watering horses, etc. before Betasaron). Next my neurologist back then got me to try Copaxone, but then she took me off Copaxone after just one month since I had deteriorated so badly. Then nineteen years ago I got my neurologist back then to prescribe me Marinol off label, and I improved greatly mentally and physically, and instead of two or three exacerbations each year I went to three exacerbations in nineteen years, a great reduction.

Then my old neurologist retired, and my new neurologist cut my Marinol in half and INSISTED that I try another MS drug and I picked the one with the fewest side effects, Gilenya. Yesterday I took myself off of Gilenya because I just got worse and worse over the last 6 months mentally (constant suicidal ideation) and physically. I went from being able to walk 4 MPH with two canes to shuffling around at 1/2 to 1 MPH, AND, for the first time in my adult life I lost control of my rectum and sh*t in my pants.

So I went to my neurologist today. I told him why I took myself off of the Gilenya yesterday. His response was that because of his medical ethics he would only will only prescribe Marinol if he also prescribes me one of the approved MS drugs or some other ones immune modulating drug off label. All these medicines other than the Copaxone and Gilenya have SERIOUS side effects listed.

If depression is a “side effect” I end up depressed and with constant suicidal ideation. Yesterday was my 65th birthday and I just decided that I did not want to spend the rest of my life with my brain coming up with a “video” many, many times everyday of me blowing my brains out.

I also decided that I was sick and tired of all the MS medicines that make me MUCH MORE crippled than I am on the Marinol. The Marinol made me much more mobile, I have more endurance on the Marinol (hey I can ride a full 30 minutes on the Marinol, I could only make it 20 minutes on the Gilenya), and I was, on all three of the MS drugs I tried, getting worse physically every day.

I am going to try a new neurologist, but what in the world can I do if all neurologists demand that I cripple myself deliberately (as in consenting to take the MS drugs) in order to get myself MS treated at all? What in the world is a system of medical ethics that DEMANDS that I cripple myself to get any treatment at all for my disease?

Thank you all for listening to me. This demand that I cripple myself is warping my mind.

[HannahsMom7]

I am so sorry to read all this. My Brother-in-law has MS and a co-worker has MS.
I don’t know what drugs they have tried.

I hope the new neurologist can help you.

[kelo]

I am so sorry. I can’t imagine how hard it is for you.

I hope you can find someone to work with you. Hugs.

[btswass]

Just trying new neurologists until one listens to you. I had to have my thyroid removed and spent 3 years trying to get an endochrinologist to listen to me rather than saying my levels are fine and there was nothing they could do. Finally just found one that prescribed another drug (T3 hormone). I’m hopeful I will start to feel better soon. You are the doctors client (I think they often forget that) and no matter how smart they may think they are YOU know your body better than anyone. I’ve learned at the ripe age of 24 to listen to my body! It knows best

[roseymare]

Move where marijuana is legal?

[sdlbredfan]

Get a new neurologist, or if not possible, report this one for breach of medical ethics. First do not harm is not just a saying; doctors are supposed to uphold that oath.

[roseymare]

The FDA is cracking down on off label use. I am afraid that soon I will no longer be able to practice effective veterinary medicine due to the constraints they are trying to put on compounded medicine.

[roseymare]

The issue is off label usage so ethics could be argued either way.

[jherold]

“His response was that because of his medical ethics he would only will only prescribe Marinol if he also prescribes me one of the approved MS drugs or some other ones immune modulating drug off label.”

If I read this right, he will prescribe the Marinol if he also prescribes one of the other drugs. If that’s true, go ahead and let him prescribe both drugs, but only take the Marinol. Just because he writes the script doesn’t mean you have to take it!

Oh, and try to find a new neurologist. Good luck. MS sucks.

[ReSomething]

My MIL used to cheerfully accept the medication prescribed, and then NOT TAKE IT. Get the Marinol, take that and leave the other ones on the table.

But, OP, MS never gets better, it’s not always the perfect medication or comb thereof. By the time my mom died she was 84, and bedridden from the MS, but a good half of her problems were old age as well. Hearing was one, eyesight the other. So she could have had a stroke and been in the same boat.

MS does suck, and I am glad the Marinol is something that works for you and I hope it keeps working for you and you find a more open minded Neurologist. Best of luck!

[Jackie_Cochran]

Thank you all for your responses, they really helped me get out of my funk.

Good news today, for the first time in over 6 months I walked to my mailbox and back, over 1,200 feet! Just three days ago I was thinking I would never be able to do that again in my life and I was thinking I would end up in a wheelchair again. Getting off Gilenya counts among the best decisions I’ve made in my life.

[Quelah]

I’m so glad you are feeling better! I also have MS. All doctors are not created equal. Just like veterinarians. I think, as horse people, it’s often easier if we put it in horse terms. If you were having the exact same situation with your horse, a treatment that HAD been working, old vet retires (hate that!) new vet sucks, you’d find a new vet right? Or you’d think yeah yeah uh huh you want me to give Fluffyprecious the wrong drug, and you’ll only give me the old drug for Fluffyprecious if I also give him the new drug? Right then. Thanks, I’ll take both. New drug in trash (or traded to barn friend who can use it LOL!) and continue on with old drug that work. And probably wouldn’t give it a whole lot of thought.

You know yourself, do what you need to do for you.

[flyracing]

I think the doctor is giving you exactly what you want with a clear “get around”, while he feels like he is also protecting his license. He is giving you a script, not putting the meds in your body. There is no requirement that you fill the script. Sounds like a win win. I hope you continue to feel better!

[hosspuller]

[QUOTE=flyracing;8652086]
I think the doctor is giving you exactly what you want with a clear “get around”, while he feels like he is also protecting his license. He is giving you a script, not putting the meds in your body. There is no requirement that you fill the script. Sounds like a win win. I hope you continue to feel better![/QUOTE]

This ^^^ “There is no requirement that you fill the script” No need to pay for or leave the drug on your table. Just trash the script when you leave Dr. office.

Don’t leave this Dr. He’s working with you and avoiding the gov’t.

[tollertwins]

It’s not just the Feds, it’s the lawyers, too. Have had 2 doc’s tell me that they won’t do HA in hips because it’s off label. First guy said it was due to advice from the practice lawyers, second guy said he’d have to have a waiver from the legal dept of the manufacturers…

Get both meds, trash one…

[Frog_Pond]

I don’t have MS but I do have some mysterious autoimmune issues that have had a few different diagnostic names throughout my adulthood. I’ve been greatly helped by the work of Dr. Terry Wahls, an MD with MS. Since her diagnosis, and failure to respond to treatment, she switched tracks to researching MS and its relationship to the immune system, which is much more modulated by our gut than anyone was willing to admit until about a decade ago. Most MD’s in practice aren’t trained in the newer research, so you need to find one that at least reads it. For some folks now, it’s all about the microbiome. Give it a look – her ideas can’t hurt, unlike some charlatans out there. Also, look at the Institute for Functional Medicine. Overlapping ideas, just food for thought. Best of luck.

(Oh, and definitely agree – your MD is just protecting his license. Accept scrip you hate and lose it on your way home!)

[Jackie_Cochran]

My now ex-neurologist made it painfully clear that prescribing the Dronabinol (the pharmaceutical drug that worked) was going to end after a few months. This neurologist also pooh-poohed ALL my reports of undesirable side effects on my one month after starting Gilenya appointment, claiming that if I had not read the insert for the Gilenya that I would not have had the bad side effects. He went on to claim that all the side effects that I got from ANY medicine were psychosomatic, not real, and that if I had not read up on the drugs I would not have gotten any bad side effects at all.

Since I knew that my now ex-neurologist was planning on eventually denying me the one drug that worked, I decided to take my chances with another neurologist, one with much more experience with MS patients. Maybe she will listen to me and not automatically assume that I am a liar.

The other problem is that he cut my dosage of Dronabinol in half, which is not enough to control all the pain that I get from my particular case of MS. My dosage of Dronabinol was calibrated with the idea of controlling my MS while at the same time leaving me with enough of an operating immune system so I did not come down with every single disease that I got exposed to. That actually started happening until I and my neurologist back then (two neurologists ago) agreed on a dosage, one that kept me 75% pain free and kept my MS flare-ups minor enough so I could effectively treat them with homeopathic remedies, but left me with enough of an immune system so I did not get sick with every head cold/flu/digestive bug that I got exposed to. I also have to worry about TB, since I was exposed to TB when I was 8 years old (a servant living in our house in Chile,) I do not want to be walking around with no immune system!

The ironic thing is that if I had not insisted on limiting my Dronabinol to that dosage I probably could have limited the little bit of further damage from MS to my brain, but the cost would have been too high, letting every disease microbe I ran across have perfect freedom to ravage my body. For over two decades I managed to avoid unexplainable MS exacerbations, each exacerbation had a clear causation (hormone replacement therapy, Copaxone, and one enormous shock deliberately set up by my birth family to cripple me, a grand total of 3 serious exacerbations in 19 years) instead of my previous MS exacerbations that came out of nowhere with no particular causative factor, happening several times a year.

And how am I sure that the Dronabinol worked? Both of my neurologists since the neurologist who originally prescribed the Dronabinol, DID NOT THINK I HAD MS until they saw the new MRIs that they ordered. Then it was, well, it was obvious that I had MS. Luckily my neurologist before this last one was perfectly willing to admit that the Dronabinol, all the supplements I take, plus the homeopathy, kept my MS under control, and twice a year he would write my prescription and tell me to keep on doing what I was doing because it was obvious that it worked. Too bad that neurologist retired.

Right now I think that most of allopathic medicine is guilty of serious malpractice, both from my experiences and from the medical field itself admitting that a lot of the advice they’ve given the past several decades was wrong, and that a lot of the medicines they prescribed were either totally ineffective or actually harmful to their patients.

My grandmother was a doctor, she practiced medicine for over 40 years before penicillin came out, and I suspect that she was a lot more effective doctor than the majority of the doctors practicing medicine now who, to me, have started looking just like the corner heroin pushers in the slums. Often modern doctors are giving bad advice, prescribing poison and not caring about the long term effects of their drugs so long they get paid by the patients or the insurers, and get the bribe money from the pharmaceutical companies (which, by the way, is legal.) This is the fault of the modern medical industry, from medical schools, to the pharmaceutical companies to the FDA, the individual doctors just do not know any better.

Thank you all for reading my rants! I really appreciate the advice you have given me. I will never again fill a prescription for a modern MS drug since every drug developed specifically for MS that I have tried has made my particular case of MS worse. It is fine if the doctor writes the prescription so long as she writes one for my Dronabinol also, but I will not fill the prescription for the MS specific drug.

[tollertwins]

If side effects are all in ones head, then I am TOTALLY messed up in there!!!

What a line of …

[skydy]

I can only imagine how much pressure there is not to prescribe anything THC marijuana related that physicians must feel.
I can understand that prescribing only a THC related drug for MS may put them at risk professionally.

If that, and only that, drug works for you I would do as people have recommended. Find a doctor that understands that Dronabinol makes you feel better and in turn, accept (and fill if you must) the prescription that will also allow the Dr. to prescribe you what you want.

There are doctors who believe in the effects of medical marijuana and those who don’t. State regulations do limit medical prescription practices. Try not to take it personally.

I know 2 people who use medical THC. One has MS. She has only started to use it and as a palliative measure. It doesn’t help much with function, for her.