Freaking new neurologist

[SquirmingSusan]

I saw a new neurologist on Monday, and I kind of liked her but I'm also quite frustrated and very ready to get on a plane and go see Dr. B. She actually spent 1-1/2 hours with me and had questions about everything. Then she finally said that she didn't think it was RLS that was causing my bad sleep, and ordered a pile of bloodwork and an MRI for my lower back. Yes, I have had 2 back surgeries, and I admitted to lying in bed when working on my computer because regular chairs make my back hurt. But honestly, my back in in great shape considering it all and I have no neurological symptoms in my legs.

And the bloodwork. At least she's checking my ferritin. She's also checking my thyroid (her and every other doctor I've ever seen blames everything on my thyroid, and yet no doctor will prescribe Armour thyroid which may be better absorbed). And looking for autoimmune stuff, I suppose but so have 2 other doctors in the last year.

I told her I'd really like to try Provigil (as recommended by Dr. B) because I'm so sleepy during the day that I'm nonfunctional and I'd really like to be able to interact with my family. She said, no, not without a diagnosis.

NOT WITHOUT A DIAGNOSIS????? I brought her my sleep study which clearly showed delayed sleep phase, a diagnosis which was backed up by the other sleep specialists I've seen. Not to mention all the doctors who have diagnosed RLS. Sheesh!

But she doesn't think it's RLS because I have PAIN. I guess I'll see her again in a few weeks and see what the test results show. But if she's not going to help me stay conscious during the day then I give up.

[ViewsAskew]

Sounds like it was a bad doctor day!

I honestly think a trip to Dr B's (or an other good RLS doc, such as Rye, Picchietti, or someone at Johns Hopkins) maybe just the ticket. Sometimes I think it's less expensive in the long run. All the research, the copays, the multiple tests you already had...yeesh.

The pain thing is a tough problem. Many doctors to not recognize that RLS can be painful. And, maybe it's not. But, if it isn't, then all of you with pain have something that is completely unrecognized! Since they already know that multiple genes are involved, with some for PLMs, some for RLS, why not another variant that makes it painful? It's very likely....but some doctors just aren't there yet. Even in some of the books on RLS, they pussyfoot around the pain topic saying that if you were tickled a long time, it would be perceived as painful. But, if I hear all of you with pain correctly, it's not like the "pain" of being tickled; it's pain.

Are you going to hang with her for awhile? Like you said, the ferritin is good. But...the rest?

[dogeyed]

Susan,
As you and I both know, the majority of the literature explains that a certain percentage of RLS sufferers have the painful kind. I have the painful kind, very bad misery complete with tears. It took my docs a year to convince me I had RLS back when I was first diagnosed and so I have no doubt in my mind that that's what I have.

And yet I had a new doc tell me that while I do have RLS, he believes it was triggered by my back. Ah-ha! So, wanted to tell you that while you may have some kind of back condition, you can also have RLS, at least by that guy I saw, and could be they are correlated. This was a revelation to me, and it was an important one, too. Because I have a whole plethera of symptoms, all of which are explained from an old car wreck I had where I broke my thoracic spine in three places. It's only as I've gotten older that the crumbled bones and vaporized disks have so deformed my back that it has migrated down into the lumbar spine.

But honestly, I do not think your new neurologist fully understands RLS. There is reading online and in books that does discuss the painful form of RLS. And my doc said that even if I didn't have RLS and only back pain, the TREATMENT would be the same as I have now, which is my codeine mixture. I cannot remember if you take opiates or not, but I can tell you that it helps so much, and I have no problems whatsoever taking that medicine, altho some members of this forum do experience a form of addiction to it.

I think it's okay to let the neuro explore your back situation, but if in the end she comes up with "You don't have RLS," then you will have to direct her to the documentation that explain the pain aspect of some RLS sufferers, and make her read it while you are with her. I would of course be interested in what she decides to do when she pronounces what your particular diagnosis is, since she is considering your back, which is part of my medical picture, too.
GG

[Aiken]

If a neurologist told me something couldn't be RLS because it was painful, I'd never come back. That's intolerable ignorance of current literature. That's basic, foundational, fundamental information about RLS, and any neurologist worth a damn should know at least that much.

That said, there may have been some important nuance to her comments that you didn't catch. For instance, it may have been the character or location of your pain, rather than its mere presence, that steered her away from RLS. That would be worth pursuing, if so. You never know.

[SquirmingSusan]

Hi GG, Ann and Aiken. Thanks for your support and feedback. In general, I think this doctor is knowledgeable and hopefully teachable. She's a second career doctor who just took her neurology boards, and was recommended to me by a local person who found me here on the message boards and got in touch with me. And she did spend 1-1/2 hours with me! And was very thorough about my medical history.

GG, what you said about exploring the back issue, is right on. I think that she just wants to make sure that there are no ongoing back issues, being that I've had 2 back surgeries in the past. But I can't imagine that they'll find anything but some scar tissue and some arthritis in my back, and what are they going to do about it if they do find something? I'm perfectly mobile, I just have mild back pain when I sit too long. And how this came up? She asked me when I get out of bed every day, and after much poking and prodding on her part, I admitted that some days I never do. Why not? Because sitting in regular chairs hurts my back, and in bed I can prop myself up or sit cross legged or whatever, and it keeps my back from hurting.

So to some extent she's just being thorough by ordering the MRI, which I survived just fine today, although it got quite warm in there toward the end. Now I know what a sausage feels like, LOL.

Once she figured out my sleep hygiene habits, I got a bit of talking to about that, and she suggested I get up every day and stay out of bed, unless I intentionally lie down and take a nap. Fortunately we have very comfy bungee chairs from Ikea and a recliner couch. So I've been doing OK with that, but I have a whole lot more anxiety about crawling into bed at night now than I did before.

Aiken, I know it's inexcusable to not know that RLS can involve pain nowadays, but I've been to doctor after doctor after doctor after doctor who told me that they've never heard of painkillers being used to treat RLS, and that why wasn't I taking clonazepam... At least she didn't flinch about the methadone.

I'm pretty sure that the bloodwork and the MRI won't turn up anything major, so we'll see how she responds. For me, my RLS symptoms are under control with the methadone; what is killing me is the daytime sleepiness. If she won't help me with that, then I'm flying to LA.

Meanwhile, I'm trying to memorize what you (Aiken) said in the pharmaceutical section about "Do you have a bias against opioids...?"

[ViewsAskew]

Susan, I hope it works.

I've had situations like this work...and not work. I suppose it's 50/50. But, as you said, that she's willing to listen and take that much time with you can't be anything but good.

[zookeeper]

Susan, I'm like you...I've had two back surgeries. I spend a lot of time sitting on my bed or crosslegged on my computer chair. Other chairs hurt my back and, for me, sitting Indian style not only supports my back, it seems to delay onset of the RLS crap. I do have a set routine I use before going to sleep. I put on soothing music, aim a fan at where my feet will be hanging out of the bed, cuddle on my left side with a cat who stays there for 5 or 10 minutes, then I roll to my right (RLS most affected side) and usually fall asleep if I haven't forgotten to take my meds...lol. And yes! the chairs in doctors offices are the WORST! I always wear slacks so I can fold my legs up while I wait.
I do hope this doc can give you some relief!

[dogeyed]

Dear Susan,
Took me a while to get back here. I'll tell you what I think of the doc's suggestion that you should get out of bed no matter what and not lay down again unless you're going to nap. Honey, the ONLY way I'M comfortable is when I lay down. I lay down practically the whole day because my back can't take it any other way. I see nothing wrong with it, either. And I sleep very well most of the time. Of course, I try to at least do some stretching exercises every day, or walk around out in the yard some, just easy stuff, so I'll sleep better at night. I also don't take my meds after 7 p.m., because some of them kind of wire me up.

But the time I was different than I am now, when I was falling alseep in the daytime for some reason, probably whatever drugs I was on at the time, and I asked my doc about it. And do you know that my young lady doctor said, "You're going to have to do something about your naps." As if I have some control over my naps. In the end, I think the more experience a doc has, the better they are at helping people.

There is a medication I started taking last winter that kills the pain in my back for a few hours, several times a day, and now I can get up and do stuff then. So, I'm sort of thinking you're not getting enough methadone, probably need to have the dose upped a little, by whomever prescribed it to you, OR ask them to ADD a different sort of pain killer...for me it was Lyrica that stopped my low back pain...and I take opiates, too, like you. It's the codeine that stops my RLS and the Lyrica that stops my low back pain, but neither works the other way around. Altho maybe the higher dose Methadone will for you. I've had to tweak my medicines a lot to get them right, on account of I have multiple health issues.

Just another tip, I like sitting in a rocking chair. President Kennedy didn't sit in one of those for nothing. He had one goofed up back. I was visiting a psychiatrist who was running some tests on me, because my mind is tangled, and she had this AWFUL easy chair that I first sat in, and I wiggled and carried on until I spotted a rocker in the room. As soon as I got in it, I was much much better. But I have to say that laying on the couch, sometimes propped up with pillows, works pretty good, too. Because if I sit too long, then my legs fire up!

I'm glad you're getting an MRI, just in case your back is deteriorating. It will also be very helpful to keep the pictures and the report in a "health" folder permanently, sort of like tax returns. This is because my back has gotten worse over the years, and I really wish I still had the old scans, to show the changes in my spine and all.

I am also glad you have decided that if you don't get proper medical help, that you will go elsewhere. And as for many docs saying opiates are not used to treat RLS, they are either inexperienced or old-school or ignorant. In my opinion they are the best cure. I actually had a resident who showed his ignorance by telling me that Vioxx is usually prescribed for something or other, and yet the stupid stuff has been off the market for at least a year or two. Sigh.

This is why these sorts of forums are so good, it lets the patient become informed and feel empowered, so that they don't get passed around. I mean, I'm not informed enough to diagnose myself, but I also know whether I have pain or not and I also know what the literature says about my various syndromes and disorders! In the end, having a gateway physician who oversees everything and cares about their patients, and of course staying informed as you have, is a good way to avoid a lot of shenanigans.
GG

[SquirmingSusan]

Hey Zookeeper (are you really a zookeeper? Where?) and GG.

Well I lasted 8 days staying out of bed and sitting on chairs during the day. Didn't keep me from falling asleep, but yesterday my back started to hurt like heck. And my legs felt like they were being roasted on a spit, too. So I crawled into bed, hooked up my Alpha Stim unit and ran through my treatment. I always get a wicked pain rebound, which happened yesterday, but today I forgot to take my methadone until 7pm. It was much better.

Thing is that most of the time my back doesn't bother me at all. That's because I recline in bed or sit cross legged or am in some kind of stretched out position that's comfortable.

My favorite chairs are the rope chairs that we have hanging from the oak trees outside. I had my dh put springs in the ropes so they're like big Johnny Jump Ups. So I can sit out there and bounce. It's been too hot and humid the last couple days, though.

And do you know that my young lady doctor said, "You're going to have to do something about your naps." As if I have some control over my naps. In the end, I think the more experience a doc has, the better they are at helping people.

The naps are my problem, and that's what I'm looking for help for from the doctor. I conked out 4 times today. It's hard to be that sleepy when you know there are things to do.

So I get a call back from the nurse for my new neurologist. I had put in a call asking if I could get some help with with daytime sleepiness, because my mom has pancreatic cancer and has just been put on hospice, and I want to be able to help her as much as possible. The nurse tells me to push my sleep schedule 3 hours later every day for a week and that will make it flip. And when the heck am I going to do that while running around picking up stuff for my mom, and staying overnight with her? Not to mention that I've tried that and even under the best circumstances my family just won't leave me alone to let me sleep from, oh, 3pm to 11pm.

It's looking like a trip out to see Dr. B is getting more likely, but the timing isn't good just now.

Well, thanks for your input. I'll be popping in and out of the forum for a while because I want to spend as much time as possible with my mom, and I don't have much time when I feel good enough to do that.

[zookeeper]

Hehe nope, Susan, not a real zookeeper, although at one time I wanted to be. Instead I have my own little zoo: currently 8 cats , two dogs and a house chicken plus all the wild life we feed, deer: turkey, racoons and squirrels.
My thoughts and prayers are with you as you try to help your mom. Do remember to take care of you, too.
Hugs, Zoo