What medicines should I request of a new doctor?

[diemyn]

Hi all! =]
I am going to find a doctor. I'm on my way. I'm going to approach each one I meet through the process with the same issues, concerns, story. Basically, I think I have MS and then list the reasons. But I really want pain relief, so right off the bat I'm asking for oxycodone and offering to sign a contract and come in once a month to count pills and whatnot. I got that idea from girls my age on the endo forums I'm a member of who'd been unable to get pain meds at first. Isn't it brilliant?!

I'm not comfortable with taking opiates every day and didn't think I could treat everyday pain until reading posts here. Can anyone tell me what they take that best relieves severe facial pain?
Severe, non light/sound sensitive, neck pain/ headaches?
Severe lower and middle back pain?
The feeling every day, all the time, like all of my muscles are trying to rip away from my bones and body? is that muscle tightness? i can only think to describe it just like i did, cuz that's all it feels like to me, but less dramatic it'd prolly be better for doctor, huh LOL =]

I'm very wary of all meds, so if you could tell me what has been helpful, but also include ALL side effects I'd really appreciate it.

Thanks everybody!

[sllowe]

Hi there,

Welcome to the MS forum.  Well, I'm not so sure it will be to your advantage to tell the Dr. why you think you have MS.  It's going to be very important for you to be a good historian though, and tell the Dr. what is going on.  The Dr. may want to know what has happened to you in the past, and ask you question.

The pain you describe it not the pain I have w/my MS, and I can't speak for all MSers to say if this is what it feels like for them.  But I can say that I've not heard it described that way here.  

I do wish you well though and hope you find a Dr. who can get to the bottom of what you are experiencing.

Take care.

[essdipity]

Hi. I agree with Shelly that you aren't likely to succeed with doctors using your plan. Neuros especially don't seem to take to hearing the patient's own diagnosis, however accurate it may turn out to be. it's good to come across as interested and somewhat knowledgeable, but beyond that I don't recommend.

I also don't think that asking for a specific type of drug, particularly an opiate, would be good. Although your motive would be to get to the bottom of things with your doctor and not waste time, there's an irreducible minimum of getting to know the doctor while he or she gets to know you. If the doctor is a neurologist, it's unlikely that you'd be able to get a monthly appointment to count meds anyway.

I hope you'll find a doctor who can uncover what's wrong and help you to feel better. If you are convinced you have MS, you should seek out an MS specialist if at all possible. Why not attend an MS support group meeting in your area and get recommendations from those attending.

The best of luck to you in this process.

ess

[Amyloo]

Excellent advise.  Open ended questions are always good, and maybe try to explain the level of your pain and the things you have tried that haven't worked, and then see what is suggested.

God bless you, Amy

[diemyn]

Thanks to everyone! I've gone the route of playing dumb and got nowhere. I refuse to approach a busted up system with the mindset that I need to play by their rules. I will be the change I wish to see. That's the only way to change anything. Honesty is the best policy and I'm creating a warm reception like never before. Keep the advice coming, please. I appreciate it!

love to all

[essdipity]

Well, I have my doubts, based on my own experiences with 6 neuros, and of course what I've read here time after time.

Good luck and let us know how it goes.

ess

[diemyn]

Hi all. Thought I'd update you on my doc visits.

I went for spirometry to see if I have asthma. After I did the albuterol treatment it hurt so bad to breathe in deep that I'd cry on the spot. It wasn't my lungs that hurt, but my lower right back and where my right leg meets my pelvis. I didn't see the doctor that day.

The next visit I was really out of it due to back pain and I just wasn't in the right frame of mind to go over things, but I asked for pain pills, specifically oxycodone and got a script for percocet along with one for advair.

I looked up advair, tho, and it says that you should try it if other inhalers haven't worked and we haven't tried other ones yet, so I'm not taking it until we do. I find it's odd little powder delivery to be disturbing.

I first needed pain medicine Saturday, the 23rd. We hadn't even filled it yet cuz I thot I wouldn't need so soon, so Sean ran out to get it from a 24 hour Walgreens. I got a painful spasm and was thrashing on the bed with pain in my chest, then it suddenly became pain in my upper back, then that went away and a few minutes later I got stabbing pain in my lower right back, then that subsided and it felt like my right leg was being electrocuted and it was moving all over the place and it was soooo painful. When Sean got home with the medicine I took a whole pill like the bottles says and it took about 40 minutes for it to kick in and  then I was able to adjust in bed and get comfy and I got sleepy and dozed off. It worked great!!!

Then Sunday I stayed in bed with terrible leg pain til i had to pee and coming back from the potty I collapsed just short of my bed and was just laying on the floor screaming in pain for awhile before I noticed my pills sitting on the floor next to me and that's when it hit me that I didn't have to lay here for hours like I've been used to doing, just writhing in pain; I could stop the pain. So, I did. I took half a pill and after 30 minutes could get off the floor and into the bed where I rested, not comfortably, but not screaming in pain, the rest of the day.

Monday morning I got up to pee at 4 AM and took one step from the toilet and fell. Pain shot up my right leg like an electrical bolt when I'd put weight on it and I fell and was just screaming in pain til Sean woke and picked me up and put me back in the bed and gave me half a pill.

It's really amazing that i don't have to suffer like I have been used to and I'm very happy with how visiting a doctor has gone.

Love and light,
Diemyn

[Fluffysmom]

Hello, I'm glad that your pain medication is improving your quality of life.  You said that you weren't in the right frame of mind to go into your stuff.

In my (long) experience, it is unlikely that a doctor will continue to prescribe such a strong narcotic painkiller without a diagnosis or documentation of cause of pain.

I'm sorry that I don't know your history, so I don't know if you have that information documented.  Since you weren't able to go over things with your new doctor, I'm hoping that you have a timeline of your symptoms and any imaging reports, bloodwork results, etc. that might shed some light on what's going on with you.

As for the Advair, there must be a good idea why it was prescribed.  If you have concerns about it, it would be a good idea to call and discuss it with your doctor.  It could be very helpful for you.  You did try the albuterol inhalation.

I have a friend that says that Advair is wonderful; changed her life.

I've found that even a peaceful approach to asking for what you want/need from doctors can either offfend them or be ignored.  I try to study the most effective way to approach things for any given situation.

Of course, given the wrong doctor, that doesn't work.  After 8 months of dead-end with my last neuro, I assertively confronted her with many things, and now i'm being discharged as a patient from that MS clinic.

I'm writing a very professional letter of complaint, and preparing to move on, hoping to receive a call from a new MS clinic to schedule me in soon.

My primary care doctor prescribes all my medications; hydrocodone, Lyrica, zolpidem, diazepam for muscle spasms (I want to change that one).  All the proof of my causes of pain has come from other specialists.  My PCP monitors my progress; I check in with her about once a month.  I've seen her for about 10 years, through thick and thin, and she's wonderful.

Best of luck,

Kathy

You must be the change you want to see in the world.

    Mahatma Gandhi

[diemyn]

Update.

Saw my doc today and finally told her that I think I have MS and want to begin the process of diagnosis. She was just wonderful! Gave me a form so I can see a neuro for free and all I have to do is bring in my medicaid denial letter, so big ol sigh of relief there. While I was there today they got 6 vials of my blood to run tests on to start ruling things out, "specifically looking for any nerve disorders since I have so many parasthesias," she said. She shared with me that it can be frustrating treating me because I refuse most treatment and I shared with her that my reason for needing a diagnosis is purely for getting disability, then getting a naturpathic/homeopathic doctor and raw diet when I have the money to do so. Let's see....the only other thing is to take riboflavin 400mg/day to reduce headaches and scedule a woman's wellness exam to make sure I don't have cervical cancer. Soooo, she was great and I'd been anxious about this date for nothing.

I am on the road toward a diagnosis of something and I'm very happy! =]

Thank you everyone for your support! <3 <3 <3 I'd be lost without this forum.

I'll post when I get blood test results.

Take care everyone. Bless you.

[diemyn]

Oh, I forgot to mention that the percocet made me too nauseous, so I asked for just oxy with no APAP (visit before last) and now that's the only thing I'm taking for the pain; It works very well at reducing the pain and the only side effect I experience is sleepiness, which is always welcome.

Love to all,

Diemyn

[Karen99]

Just be very careful with the pure Oxy, okay?  Unfortunately, incidences of deadly overdosing is increasing because folks are not aware how powerful this drug can be. It is very important not to exceed the dosing instructions.    You probably know this.  Just making a note here for others who may come across this message unaware of the dangers of Oxycontin.

I am glad you are finding pain relief and hope the source of your pain can be found.  

[diemyn]

oops, just to clarify I take pure oxyCODONE. not the extended release version known as oxycontin. the most I've taken at once is 2 5mg pills, but my usual dosage is half a pill. those tiny little suckers are HARD to cut tho.

[diemyn]

I got a letter in the mail today from my doc's office. It just says that my thiamin level is normal. That's good, i guess. I thought it was odd that they'd send it alone since 6 diff blood tests were being done. But yeah, I don't have a vitamin B1 deficiency, so yay. Boy, this narrowing down is going great so far....sarcasm.

[diemyn]

Well, I saw my doctor last week and got the results back from all the blood tests. Everything was perfectly, eerily, normal. So, all that means is that MS didn't get ruled out and there are no answers still. =[  I asked about a sleeping pill, since the pain pill (oxycodone) does nothing for the headaches I get most often. But the oxy does make me sleep, which is better than being in pain all awake. So she gave me a script for valium, which I can also take when I feel a seizure thing coming on. I asked what she thought about those and it's her opinion that they aren't seizures, but that I have a demylenating condition. I don't know what that means; just that she didn't think it sounded like seizures to her. We have been too broke to get the 4 dollar valium so far. Nothing changed with my pain meds; just need to refill them.

Diemyn

[Wobbly]

hi there...can you describe what happens when you have they "not Seizures"... how do they effect you?  how long?  what happens?  if you don't mind...I'm not sure if it's something to ask or not..

take care
wobbly
dx

[Meaganj]

Some of what everyone said makes good sense, or happens to be the norm. Neurologists are notoriously ego0inflated and analytical. I am on my third one. My first one told me I had anxirty and Rxed me xanax, which did nothin. The second one was unimpressed that I had done some research and came informed, i think I hurt her ego. I even broke down crying and she didnt even offer me tissue. So now I'm about to go to the third neuro, a little more prepared than i had been. I am going to tell him my story from me as if he has never heard it before, that my Sister has MS and it presented very similarly in her, that I want the best care possible, the T3 machine, latest MRI software, and anything else I think we both need to know. All ascalmly and friendly as I can be. Doctors so often forget how hard it is for the patient. I hope my next neuro has some outwardly visible compassion!

Good Luck!

[diemyn]

Wobbly, sure I can try to explain them to you. There's a couple diff things that happen; I'll start with the IMO less severe "thing"

It begins with a tickling feeling in my brain, kinda behind my right eye. Then the tickling subsides and my right nostril just begins pouring mucus; very thin, clear, mucus. While my nose is pouring a headache starts that is just about the worst pain I've ever had in my head. The headache is punctuated with even worse pain every time I inhale. It's a struggle to keep breathing, of course, cuz breathing makes it so much worse, but I do keep breathing; just a little more shallow than normal so the spike in my head isn't driven so deep. I am screaming bloody murder cuz the pain in my head is so bad, then there's a calmness and the pain in my head feels a bit better, so I quiet down and hope this is over. But it's not over at all and my body feels strange and tight, esp on the right side. I'll notice my toe is twitching like crazy or that the muscle in my thigh is jumping noticeably, then suddenly I'm arching my back and I can't speak or swallow. Once I was making this horrid barking noise during it. I'm only vaguely aware of what is going on around me; like I see the ceiling and that is what I am thinking. I don't know how long the back arching happens; just that it's painful and what follows is not. After the arching stops there is no pain in my body anywhere, my toe or leg is shaking or twitching, but I don't feel the tightness that usually goes with that; there's no pain at all. That's nice, but then I have to arch my back again and it cycles like that about 3 or 4 times til I am able to collect myself long enough to take a pain pill and fall asleep.

That is the less severe "thing" ?!

The other "thing" begins with intense and immediate nausea. That lasts a few minutes, I rush to the toilet in case I am actually gonna throw up this time (never have), then I get crazy vertigo like the room is spinning around like a top when I move my head half an inch, so I deal with that feeling for a few minutes focusing on my breath and keeping calm (cuz I know this game now) and then my always present abdominal pain ramps up to 10 and I begin to sweat profusely (oh, I am so articulate today =] ) and I just strip off all my clothes and fan myself with whatever is handy, so now I'm nauseous, hot, and reeling, and in pain. While I'm fanning myself the nausea goes away as sudden as it came on, then my arms and legs begin to go numb. It starts with a tingle in my feet and hands, but it's only 10 seconds from the tingle to absolute numbness; zips up my arms and legs like a lit fuse. Once I'm numb I'm not in pain anywhere anymore, but it's like my eyes were at the end of that fuse too and I just go blind. My vision gets blotchy and sparkly, then it's gone. I lose consciousness just long enough to fall from I sit or perch, so I wake up on the floor or laying on the bed (in one case I didn't rush to the toilet and I was proud of that). When I come too I am in immense pain in my abdomen, I can see but it's fuzzy and my hand and feet are at odd angles and it feels like all the muscles on the right of my body are trying to rip away from my body on their own. I alternate curling up and arching my back involuntarily while I'm screaming in pain. And my boyfriend tells me that the right side of my mouth is dragged down like it has a hook in it. Sometimes I can speak and other times it's like I don't even have a tongue anymore to speak with; it's as useful as an unplugged toaster. The pain is constant and BAD at this point so I can acclimate at least and be more aware of how I am not in control of what my body is doing. The whole "thing" lasts 30- 40 minutes, but the pain stays bad and I can't so much as twitch a finger on my right hand without making my abdominal pain 10 times worse for a few minutes. It's so painful to move that I just can't bring myself to do it, so Sean positions me so that I can take a pain pill and then carries me to bed where I wait for sleep to come.

One of these things happens once a month, at least. One time the first one was followed by the early stages of the second one, but the pain pill I took after the back arching incident kicked in during the sweating and it didn't progress past that stage. I think that's everything; it's been weird reliving it to retell it, but it's more thorough that way. So that's my prolly non-seizures. =p What do you think?

Love and light to you,
Diemyn