So frustrated. Page Dr. House.
March 29, 2013 9:50 PM   Subscribe

Left side (arm and leg) numbness, weakness, pain and weird temperature changes. Clean MRI and no abnormalities in any other test. Primary care sent me to ER, ER did test, found nothing said it was "probably a migraine" (with no headache and no aura?!), and sent me home. What is going on? Hope me please.

So long-story short. I've had various auto-immune diagnoses over the past decade. Currently, it looks most like Lupus, although the "diagnosis" in my file is Sero-Negative Rheumatoid Arthritis (negative Rheum Factor and ANA currently). In November 2005, I started having severe chronic mid-back pain. Hasn't changed and is (relatively) controlled with pain medication. Also have had a history of migraines, which always present the same way: pain, light and noise sensitivity, nausea, and fatigue. To control the migraines, I was prescribed Verapamil. That has reduced my pain (no one knows why) and (almost) stopped the migraines.

There are way more details, but I'm only giving it as background information.

When I started winding down for bed last night, I had some chest pain and tightness. I had that a lot after starting Verapamil, but it's tapered off after that first week or so. I didn't think much of it. Then I woke up this morning (around 6:30) and my entire left arm was numb, weak, painful, and heavy. After being up and around for about 30 minutes, my left leg felt the same way. It got worse over the course of the day.

So I made an appointment with my doctor, she did a neuro exam and found that my left side was weaker, my reflexes were reduced, and I couldn't walk normally. They neurologist on call said I had to go to the ER to expedite imaging studies. The pain and weakness increased, but all vital signs stayed the same. The MRI of my brain showed nothing. I asked why she wasn't doing a CT, but she said that because my neck didn't hurt, it couldn't be a nerve or disc issue. They drew blood (results not in yet) and sent me home. Her last theory was that I had a migraine, despite the fact that I have no headache, aura, nausea, or noise/light sensitivity. I took Imatrex at that point (probably just because I felt like it was such a ridiculous theory that I might as well prove it wrong by doing what I do to get rid of migraines normally), but no change in any symptom...sigh.

So now, I wasted four hours and am still in pain. And I don't have a migraine. And I just want to know WTF is going on. I know YNMD and/or YNAD. But what the hell is going on with my freaking body?

I'll watch for follow-up questions, or you can look back through my posting history. I've written a bit about my various issues in the past.

tl;dr - my left arm and leg are numb, weak, heavy and in pain, and the temperature varies from uncomfortably hot to uncomfortably cold. Nothing helps or relieves the pain. No test results to explain it. Help.

Thanks Hivemind.
posted by guster4lovers to Health & Fitness (23 answers total) 3 users marked this as a favorite
I am probably not going to be much help, but I believe that maybe hearing from all sorts of people may yield a hidden nugget or path to research. I am not a doctor. My mom wanted me to be a lawyer, and I am not that either. I have no medical training beyond CPR and practice attending to my children's various cuts, bruises and bumps. My general suggestion when they were young was to put a band aid on it and to kiss it and make it better. Now my general advice is to rub some dirt on it and get back in the game.

I have had several spinal fusions. One, L4-L5 and the other in my neck C4-C5-C6-C7 (three levels). The symptoms I had were pain radiating down arm or leg, weakness, and numbness. At no point did I have a heavy feeling in my limbs or significant temperature changes. I don't think you have any structural issues with your spine.

In the absence of any indications from the MRI, I would speculate that you have some sort of infection or virus affecting your spinal column or brain. I think the blood test results will be illuminating as to what is causing your symptoms. As someone who has been dealing with medical issues, you know that an immediate diagnosis is not always possible. Sometimes a diagnosis comes from test results and sometimes it comes through process of elimination.

I do not think migraine is the cause. I would ask about or research an infection or a virus that is causing inflammation and putting pressure on your spinal cord. I think the fact that it is only on your left side and that it is both your arm and leg is material information. Sometimes the temperature extremes indicates your body fighting an infection. Sometimes not.

I would call my doctor first thing and ask about the blood test results and also ask about side effects from your medications and about interactions of your various medications.

(I called a good friend who is a neurosurgeon and read your question and his response was, paraphrasing, "I have no idea. There is such a long history and so much missing information that I would not even speculate at this point. The only suggestion I would make is to either press this person's current team to come up with a plan to diagnose and treat. If they can't or won't, find another team.)

Good luck. Godspeed.
posted by JohnnyGunn at 10:15 PM on March 29, 2013

I am so sorry you're going through this. I've been through years of health hell myself, and I know that few things in life are as stressful, scary and infuriating as this crap.

IANYD, and I truly have no idea what's going on. But I would look very carefully at your back. If something goes wrong with your back, it can cause all sorts of numbness, tingling, weakness, etc. Also, I'd have them do a thorough workup on your heart. On your own, check your heart rate often, especially when you're standing up. (But bear in mind that panic will make your heart race.)

I have a condition called postural orthostatic tachycardia syndrome, and it causes all sorts of problems with my heart rate, my stamina, my ability to focus... It can also make my left hand very sore or numb, and it causes me chest pain, neck pain, overheating with crazy sweats, red-face, pale face, bluish fingers, and more. (If I ever do have a heart attack I'll be screwed, because the symptoms of a heart attack are basically an average day for me.)

I am not saying you have this, but a lot of your symptoms really, really sound like heart stuff to me.

Don't let the fuckers just give you an EKG. They will probably want to stop there, because doctors suck, but an EKG is a very superficial look at your heart. What you want is either an echocardiogram or a holter monitor test. Do some research and talk this over in detail with your doctor. If he doesn't want to do these tests, make him explain why not.

Again, I can't say for sure that anything is happening with your heart. But I had some similar symptoms, and my lazy-ass doctors kept saying they didn't know what was going on and it was probably just stress... and then in the end it turned out I have a screwy heart. Took me years to know for sure. Kaiser Permanente can eat a big KFC bucket of dicks.

Anyway. Try to relax as much as possible. This sucks, but you'll get through it.
posted by Ursula Hitler at 10:34 PM on March 29, 2013

IANAD. My father is though, and many's the time I've called him up or emailed him for a remote diagnosis or a second opinion. I therefore have a pretty good sense of what kinds of things can be productively speculated about through long-distance communication, and what things cannot. Your case is solidly in the latter category.

As far as I can see, the advice given by JohnnyGunn's neurosurgeon friend is really the only responsible advice that can be given here. The internet is not going to be able to tell you what (if anything) is wrong with your brain -- there are just way, way too many possibilities and figuring out the answer is something that is challenging even for an expert team of trained professionals with direct access to the patient (i.e. you) and a complete toolkit of modern diagnostic techniques.

Trying to find the answer -- or even tbe right path to take toward one -- is just a ludicrous concept for a bunch of (mostly) amateurs who only have access to your case history as related above. Given the potentially serious nature of your symptoms, it seems irresponsible to me to even attempt to do so, for taking the wrong path here could easily do more harm than good. Press your doctors for a more definitive diagnosis and treatment plan, or seek a second opinion from an actual neurologist who can meet you in person and who can have access to your whole case history including all your test results to date.

Be prepared to hear that there simply is no good way to know as of now, however. Sometimes we simply run up against the limits of what medicine can do, and the best and safest course is simple watchful waiting. If after additional consultation with your current doctors and after a second opinion has been sought this is the course of action that you are still hearing recommended, the best thing to do is to simply get the best information you can regarding what to watch out for, and then try to carry on with your life. It sucks, but that is sometimes all that it is prudent to do.
posted by Scientist at 10:49 PM on March 29, 2013 [2 favorites]

IANAD, so feel free to take or disregard my thoughts, but I second this possibly being a heart issue. The numbness on one side of the body could be a stroke warning sign, and the chest tightness and pain are sometimes heart attack warning signs. I don't mean to scare you of course and I may very well be wrong, but I'm with Ursula Hitler in getting a thorough look at your heart. Blurry vision and slurred speech are also warnings for strokes, so if you have any of those signs, I would definitely get checked out. How is your blood pressure? I am not a medical professional of course so I may be wrong, but I would ask your doctor to check out your heart. Hope you feel better soon.
posted by timespacewheredoifit at 11:01 PM on March 29, 2013 [1 favorite]

Just so I'm clear: I've been to (at least) 25 doctors in 10 years, in just about every specialty, including regional (and even national/international) experts in both rheumatology and pain management. I have pressed them at times, been polite and respectful at times, gotten angry and depressed at times...and the result is always the same: Nothing changes. I never get closer to any kind of answer.

So if the answer is "just keep going to doctors" or "push your current doctors for an answer" or "come to terms with it and just move on with your life" then I'm obviously asking the wrong question. I'm TEN YEARS into this, and today, half of my body has something wrong with it, and my best effort ended up with me here, with no answers. I have a good life. I have had good doctors. And they've all given up. So here I am.

What I DO know is that there are a lot of really smart people who will read this. What if one of them recognises this? What if, in that one person, it triggers some piece of information that resonates?

When you've tried everything, you have nothing to lose asking a bunch of strangers on the internet for help. I'm not taking what anyone says as the Final Word on this. I'm not looking for answers so my life is meaningful. I want to know what this could be so I can ask better questions and advocate for myself.

Thanks for the comments so far. I've never had an EKG or echo. I've also got some blood results that are abnormal and could indicate infection (or just general increased inflammation). Those are things I will talk to the neurologist on Monday. I appreciate your help.
posted by guster4lovers at 11:10 PM on March 29, 2013 [4 favorites]

Blood pressure is normal - 125/79 today. That is on Verapamil though, which strikes me as odd that my blood pressure is normal, even on a medication taken for high blood pressure.

Don't want to threadsit so I'll stop responding unless there's a pressing question. Thank you everyone.
posted by guster4lovers at 11:13 PM on March 29, 2013

This is the type of ailment people successfully go to accupuncturists with.

That said, you sound pretty into prescriptions and western medicine, so maybe this is not your path?

I will say that if you have not experienced a competent accupuncturist, you will tend towards thinking that Traditional Chinese Medicine, is woo.

There is lots of science to back it up. It isn't woo. People who tried a crappy or unexperienced accupuncturist are likely (understandably) label accupuncture as a whole as woo. This would be a mistake.

Your symptoms are what TCM (Traditional Chinese Medicine) are designed to cure.
posted by jbenben at 11:25 PM on March 29, 2013

Why are you so sure this is part of your previous issues? Could it be a new issue? If you are looking for an article that gives a good example of a heart issue manifesting itself as back pain and numbness (not exactly what you have but...) here is a link to a Washington Post story that is part of their ongoing "medical mysteries" series.
posted by JohnnyGunn at 12:06 AM on March 30, 2013

I've been sick with one damn thing or another my entire adult life. Silly things, gross things, serious things, you name it. I'm not saying that if you "push your current doctors for an answer" you're sure to get one. Believe me, I understand (waaay down deep in my bones) how doctors can seem more like a problem than a solution. I have been there.

It's entirely possible you'll never find out why you're sick all the time. I haven't. But this new thing you've got going on now could be serious, and you need to make sure you're not in immediate danger. That's the kind of question doctors can usually answer, especially if you nag enough.

Maybe this all just seems like one more damn thing to deal with. But you have to treat this like its own thing, like a new and urgent problem, because it may be one. So, you may need to push your doctors, or find new ones. They're the ones with the scopes and prods and machines that go ping. You can do your own research, you can ask friends or Metafilter for advice, but you're going to need some doctors to really sort this out. Everything else is just an educated guess at best.
posted by Ursula Hitler at 2:00 AM on March 30, 2013

Really not the audience I hope you reach, and I have to assume you've already been screened for this, but on the remote chance you haven't (the profile is typically male), and since you've explicitly asked for divergent connections and it's possible I'm a largely unconscious node for one of those, will throw ankylosing spondylitis into the ring, as it superficially resembles parts of what you've described. (Only thought of it because its marker showed up on a test I'd done recently, was top of mind.)

Do you have a friend or family member you could let do some of the watching while you wait for Monday?

posted by nelljie at 2:39 AM on March 30, 2013

I used to get classic pain/aura/puking migraines. Then the changed and became like you describe: left side numb/tingling/painful, no aura, usually not even a headache. And super exhausted. Triptans ate contraindicated and went on topomax for a few yrs. I stopped getting them and no longer take topomax, but it was helpful. Anyway, whether or not you are having migraines, I don't know. I do know that they very much can and do present the way you're describing. Good luck
posted by atomicstone at 4:00 AM on March 30, 2013 [1 favorite]

I am a woman with ankylosing spondylitis and I wondered about that, too based on your descriptions. If you went to mostly older/old-fashioned rheumatologists, they may have not considered that diagnosis because of the old rule that it is a "men's disease". If you are having spinal involvement in your arthritis, that can cause weird neurological symptoms.

(As far as modern research is concerned, nelljie, AS is probably just as common in men than women, just severely underdiagnosed or diagnosed as "seronegative spondyloarthropathy" which is basically another name for the same thing. When those two diagnoses are considered together, women and men are diagnosed at more or less equal rates, although it can still take up to 5 years longer for women to be diagnosed at all.)
posted by hydropsyche at 4:21 AM on March 30, 2013

I responded in one of your previous threads -- sorry to hear you're still dealing with health issues. I just wanted to second atomicstone's comment that migraines can sometimes present this way. I've gotten a lot (not all!) of my migraine pain and nausea under control through very strict clean eating, but I still get what I think of as my "electrical pain auras" in my hands and feet even if I don't have the other classic migraine symptoms I'd grown accustomed to. There is weakness in my hands when this happens, too. So, I think migraine presentation can change (mine certainly has as I've gotten older) and this could in fact be a weird new migraine thing. Good luck -- I hope you feel better soon.
posted by katie at 4:36 AM on March 30, 2013 [1 favorite]

Here's another possibility: MS

I was diagnosed with MS nearly three years ago, after at least a decade of intermittently presenting the weakness/numbness and mobility issues on my right-hand side. I had a lot of chest tightness and pain that I mistook for heartburn or, on one sleepless night, cardiac arrest. This turned out to be what is known as the MS Hug, a tightness in from the sternum all the way down the abdominal and rib cage area, caused by muscle spasms. Feels quite a bit like there's a belt around your torso, being tightened to varying levels of constriction. About a year previous to diagnosis, my right leg would give out after about 20-30 minutes of constant physical activity. They'd go "rubbery", literally seeming to twist and bend in any which way.

My question now is have you had a spinal tap within the battery of tests? There have been cases of MS where a brain MRI has come up clean, but the spinal tap has the oligarchal band count leading to diagnosis.

Either way, I'll keep you in my thoughts and hope that you get an answer soon.
posted by arishaun at 4:39 AM on March 30, 2013 [1 favorite]

It could still be a migraine - hemiplegic migraine is a recognised variant of migraines. It could be that the medication you are taking is altering the way you perceive the pain associated with it, which is why there is no headache. I'm not sure that imitrex will do anything for the paralysis, it is really to address the blood vessel spasm that causes pain. Just a thought.

I know it's frustrating, I had an episode of blindness diagnosed as a migraine a few years ago and my attitude was "WTF I didn't have a headache!" for a long time. But the thing is, "auras" associated with migraine are just abnormal brain signalling, and it's very common for that abnormal signalling to be in the visual areas of the brain and present as flashes and spots in the eyes. But if it's in the motor area of the brain, it might appear as paralysis. So if you were having a migraine, it can be considered that paralysis is your 'aura', if that makes any sense.
posted by chiquitita at 6:16 AM on March 30, 2013

I cannot speculate on your diagnosis (I am a doctor but not yours), but what your doctor was referring to was an atypical or hemiplegic migraine. I have seen it happen without an aura, nausea, or headache. And you have a history of migraines.

I know that you are frustrated because you have chronic health issues but I would urge you to consider this a new issue and not say "I have been dealing with this for 10 years" - you've been dealing with other things for 10 years, now you have this. New symptoms may be related to old symptoms, but to assume that they must be will overlook other possibilities.

Your heart may cause left arm symptoms but for it to cause left leg symptoms would be very unusual. The answer above presumes stroke is a "heart issue". That is most often not the case. Talk to your doctor.

Two other pieces of information that may help you: the MRI of the brain does not cover the neck and spine (based on your symptoms, as your doctor in the ER said, a disc or peripheral nerve issue is unlikely - this is the reason for not looking at your neck or spine, not a reason why not to do a CT. MRI is better for most neurologic issues so we do not usually get a CT after MRI if MRI is available).

Be very careful of any diagnosis or advice given here on your symptoms.
posted by treehorn+bunny at 7:00 AM on March 30, 2013 [5 favorites]

I haven't had an LP, arishaun. And Ursula Hitler, I apologise that my comment sounded like it was directed at you - it wasn't. This is frustrating, and I agree that it's worth pushing doctors about it. And your general attitude towards KP is one I generally share. :-)

Okay. The migraine theory.

If it were a migraine, wouldn't it be gone by now? 24 hours later symptoms are still the same. I'm willing to suspend my disbelief that my long history of fairly typical migraines can become a migraine without any of my normal symptoms...although I've never had a migraine last more than 4-5 hours. It just seems unlikely.

Thanks to everyone for the comments. I see the neuro on Monday, and I'm supposed to be seeing a new rheumatologist sometime in the near future. In my area, there aren't tons of options, so we'll hope that I get someone who is more modern in outlook.

I've always (sort of secretly) thought it was Lyme's Disease, but none of my rheumatologists have ever believed that chronic LD exists.
posted by guster4lovers at 9:55 AM on March 30, 2013

I'm kind of amazed nobody has even give you an EKG. If somebody has chest pain and a painful left arm, I think most doctors would automatically investigate heart stuff. When I first started having my heart problems years ago and I went to the ER a couple of times, the staff there dropped everything when I said I had chest pain and a painful left arm, they made me sit in a wheelchair while they rushed me from room to room, running tests. They treated it like a heart attack. Pain on the left side is a classic sign for heart stuff.

I'm not trying to scare you, and it sounds like this isn't a heart attack. In fact, the longer you feel like this without dying, the less likely it is to be a heart attack! (That's what the doctors told me, at the time.) But I am puzzled why your doctors decided it was just a migraine, without running any heart tests.

I don't know, maybe because it spread down to your leg, or because your heart rate was normal, they decided there was no need to look at your heart. There has to be SOME reason why they didn't pay more attention to your heart. It is definitely something you need to ask your doctor about, because, again... I sent an entire ER into "cardiac arrest" mode by saying I had chest pain and a sore left arm!

Do you know your heart rate sitting down, and standing up? If your heart rate is too fast, that could be significant.
posted by Ursula Hitler at 5:12 PM on March 30, 2013

Just popping in to say that I've had migraines that last for days and days (my longest was a hellish five day affair) with no change in severity or relief, even (in the case of pain) with large doses of morphine coursing through my veins. I have read accounts of people who have had them for months with little change in severity. So, that is possible.

Best of luck, this sounds stressful, scary, and difficult. I hope it gets straightened out.
posted by k8lin at 12:04 AM on March 31, 2013

I do have a diagnosed heart murmur, but they've never looked any closer. I'll bring it up tomorrow when I go in.

Symptoms still persist - my perception is that the weakness is getting worse, and the pain has turned to constant buzzing or humming. I accidentally dropped my laptop a few minutes ago when I had too much of the weight in my left hand. At this point, it's getting hard to type, and I've had muscle spasms on my left side for the last two days.

I have a friend who is a doctor at the Kaiser facility I was in, and I finally got to talk to her today. She thought that it was really unlikely this was still a migraine (though did say it was possible). She was more concerned it was MS, even with a clean brain MRI. She said to try and get the doctor to order an LP, and also said that the neurologist I'm seeing is one of the best doctors in the area. I'll update if they figure anything else out. I'll also still be watching this thread, so please continue to comment.

I really appreciate all the help so far.
posted by guster4lovers at 3:01 PM on March 31, 2013

Do please continue to update. I've gotten invested in this, and I'm hoping for the best.
posted by Ursula Hitler at 3:42 PM on March 31, 2013

Neurologist has no idea. He's ordering an MRI of my cervical and thoracic spine, despite the fact that he doesn't think the problem is in my spine. Beyond that he doesn't know what to do, but says that he's "on it." All of my blood work (taken in the ER) came back normal, except for an elevated SED rate.

Also said it's not a migraine because it wouldn't last four days. He indicated that I might just have to "live with it" like I do all the other conditions. I told him how unsatisfactory that is. He said that he hopes the MRI will reveal something, and if it doesn't, we'd figure something else out.

posted by guster4lovers at 9:08 PM on April 1, 2013

Did you ask him about your heart at all? (Sorry to harp on that, but it continues to puzzle me why they didn't look at your heart immediately.)
posted by Ursula Hitler at 10:29 PM on April 1, 2013

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