What the hell is wrong with me?
June 28, 2011 6:58 AM   Subscribe

I can't keep going like this.

OK, this will be long, so apologies and all that.

I've had the feeling lately that I'm just falling apart, both physically and mentally. I have no idea if these issues are related to each other in any way, and I'm not exactly thinking clearly about any of it. I'm seeing my doctor in August, and I am aware that none of you are my doctor, nor do you play doctors on TV.

Physical issues: I have frequent headaches, tremor in both of my hands (not constant, but more often than not), muscle weakness in my legs, trouble speaking clearly and messing up words, trouble focusing my eyes, and fatigue.

Mental issues: MAJOR brain fog...my memory is completely shot, I forget things almost immediately; can't focus my brain (it's very loud and crowded and muddled in there), brief moments where I won't know where I am (like when I'm driving); I easily lose track of conversations, have to have people repeat themselves, etc. I also just feel like I'm moving slower than everyone else, almost an apathetic feeling.

Other relevant info: I'm female, 33 and have struggled with depression since college. My mood has been fine. I take Wellbutrin and Prozac for the depression, and melatonin to help me sleep.
posted by altopower to Health & Fitness (84 answers total) 12 users marked this as a favorite
My experience watching Grey's Anatomy suggests to me that you might have a brain tumor, but IANYD, nor am I anyone's doctor, nor am I qualified to even guess what's really wrong with you in any meaningful way. Can you see your doctor sooner than August? Many of your symptoms are worrying, and together, they're significantly more so.
posted by litnerd at 7:02 AM on June 28, 2011

I would get thee to a doctor ASAP. My neighbor recently had very similar symptoms, which really built up over the course of a month, and it turned out to be a large brain tumor. I don't want to panic you, and of course I am far from being a doctor, but the issues with speaking, focusing your eyes, and losing track of time/space are troubling. Please try to get to a doctor quickly, even if it means the ER.
posted by Ms. Toad at 7:07 AM on June 28, 2011

Wow, you sound like me! Well, apart from the depression.

For what it's worth: my diagnoses are:

Hypoglycemia (low blood sugar causes the hand tremors);


Sleep apnoea (you need an overnight sleep lab test to screen for this. A CPAP machine may change your life);

Fibromyalgia (see a rheumatologist);

Chronic fatigue syndrome (see a rheumatologist).

See a Dr, and get them to refer you to the relevant specialists.
posted by Sockpuppets 'R' Us at 7:08 AM on June 28, 2011

Best answer: Seconding getting in to see a doctor sooner. You have an acute problem; they need to work you in. If not, go to another doctor. There isn't any reason to be miserable and anxious about this for another month. You need to take action here.
posted by something something at 7:08 AM on June 28, 2011 [3 favorites]

See a doctor, obviously, as soon as you can. But, as much as these symptoms could be caused by various terrible things, they could also all be caused by simple anxiety.

So see a doctor, soon. But, in the mean time, try not to make things worse by convincing yourself you're dying. I've been there.
posted by 256 at 7:08 AM on June 28, 2011

So you are experiencing several unfamiliar problems which are negatively affecting your wellbeing. Perhaps now is the time to see the doctor.
posted by axismundi at 7:09 AM on June 28, 2011

Seconding the above. Please see a doctor (preferably a neurologist) immediately. The two possible things that first popped into my head were small, repeating seizures and strokes, neither of which are good things. And that doesn't even begin to address the myriad things that could be going on that a casual watcher of Discovery Health wouldn't know about. Please do whatever is in your power to see a doctor ASAP.
posted by phunniemee at 7:10 AM on June 28, 2011

Definitely a doctor ASAP.

Also, how much melatonin are you taking and are you sleeping enough?
posted by Loto at 7:15 AM on June 28, 2011

Yes definately see a doctor. I'm not a doctor but possibly search for MS.
posted by stormpooper at 7:19 AM on June 28, 2011

Before you freak out about MS or a brain tumor, this is exactly the symptom profile of someone suffering from prolonged sleep deprivation as the result of sleep apnea or narcolepsy. Get thee to a doctor ASAP for not just a neuro workup but also a sleep study.
posted by availablelight at 7:21 AM on June 28, 2011

Uh, not to add to the chorus of concerned voices, but some of those symptoms you describe sound exactly like those of my brother's late wife, who had brain cancer. Get to a doctor NOW.
posted by dbiedny at 7:21 AM on June 28, 2011

I suspect attempting to diagnose this is way out of AskMe's depth.

Call your doctor and get an appointment sooner. Emphasize the symptoms that are causing you the most problems: you can't focus, you forget where you are when you're driving, your eyesight's affected. Those are the kind of things that will get you in pretty quickly. From there, a neurologist referral would be appropriate.

Wellbutrin is known to increase the risk of seizures - it's not a common side effect, but it's there. And anecdotally, I've heard some stories from people who've taken prescribed Prozac and lost big chunks of time/memory. I couldn't say if either of your medications are related to what's going on, but it's not impossible.
posted by Metroid Baby at 7:25 AM on June 28, 2011

Response by poster: Also, how much melatonin are you taking and are you sleeping enough?

I take one 3mg pill per night. As far as I know, I'm sleeping fine...my husband says I'm not stopping breathing or anything, so I'm pretty sure it's not sleep apnea. I usually do feel rested in the morning, too.

My concern with going to my regular doctor is that she tends to minimize things...I can't count the number of times I've gone in there with an issue and she's responded with "Oh, that's completely normal," even when it clearly wasn't. So, maybe I should skip her and go straight to a specialist?
posted by altopower at 7:25 AM on June 28, 2011

Response by poster: Oh, and I've taken Wellbutrin and Prozac for a long time with no problems. These issues have developed over the past 4-8 weeks or so.
posted by altopower at 7:26 AM on June 28, 2011

Get yourself to a doctor well before August - if your regular doctor can't take you, ask them for a referral (but my doctor's office always has "sick" appointments they save for the beginning of the day, so call every morning if you have to).

I don't want to freak you out, since I'm not a doctor, but even if this turns out to be nothing serious you don't have to spend another five weeks suffering (and worrying).

I am not a rush to the doctor person, if that helps put my answer in context.
posted by mrs. taters at 7:26 AM on June 28, 2011

Just about any doctor, including at Urgent Care, could order a blood workup right now. That's almost certainly the first thing your doctor is going to do in August. Go ahead and get that done, you should have results by the end of the week or the beginning of next week, and either there will be something super-obvious on there or at least something you can call your doctor's office back and say, "What I meant to say was, something is wrong and I need to see the doctor as soon as possible, not at the next available routine checkup time."
posted by Lyn Never at 7:27 AM on June 28, 2011

You have symptoms that could very well have a physical cause - hyperthyroidism is what spang to mind for me, which is very treatable. I wouldn't rule out brain tumours, but compared to other physical causes that could cause these symptoms, they are rare, so don't panic. But do get checked out asap by your GP.
posted by *becca* at 7:27 AM on June 28, 2011

It may be incidental, but you're also probably overdosing on melatonin (and melatonin side effects/overdose comes with confusion, memory problems, etc). Micrograms not miligrams, for 2-3 days to reset your body clock, not every night. You might want to do some googling and find something else to take to sleep.
posted by Lyn Never at 7:31 AM on June 28, 2011

Response by poster: Just about any doctor, including at Urgent Care, could order a blood workup right now. That's almost certainly the first thing your doctor is going to do in August. Go ahead and get that done, you should have results by the end of the week or the beginning of next week, and either there will be something super-obvious on there or at least something you can call your doctor's office back and say, "What I meant to say was, something is wrong and I need to see the doctor as soon as possible, not at the next available routine checkup time."

I did have a CBC and metabolic panel in mid-May or so...I don't really remember why, though. Thanks, brain fog! Everything was normal or close to it, I was very very slightly anemic, and had slightly elevated CO2 levels. The doctor didn't mention anything about those things, I looked them up myself.
posted by altopower at 7:34 AM on June 28, 2011

Also, if you're unhappy with your primary care physician, if you feel she doesn't take your concerns seriously or seriously enough to your satisfaction, switch to a different doctor. Nothing in the world is holding you to her care.
posted by litnerd at 7:38 AM on June 28, 2011 [1 favorite]

Well, again, not to be inappropriately alarmist, but those were my father's symptoms. He had a brain tumour. It took four and a half months from his earliest symptoms for the NHS to get him a diagnosis, five months from his earliest symptoms for him to die.

It sounds to me like you shouldn't be driving.
posted by tel3path at 7:40 AM on June 28, 2011

I did have a CBC and metabolic panel in mid-May or so

Those tests are great and helpful for many common problems, but they really don't cover what they should be testing on you, given your symptoms. I'm here to agree with everyone else: you need to see a doctor ASAP, not in August. If you can go straight to a specialist without seeing your PCP first, go to a neurologist.

And for your own safety, please consider honestly whether you should be driving at all. I know it would be a huge hassle to stop, but getting in an accident is no fun either.
posted by vytae at 7:47 AM on June 28, 2011

Didn't see your response before I submitted. The problem with skipping straight to a specialist is there's such a wide range of disorders that could cause these symptoms that it's hard to pick an appropriate specialist. Are there any alternative GPs available to you?

Also, were there thyroid and glucose tests on the metabolic panel?
posted by *becca* at 7:47 AM on June 28, 2011

Response by poster: Also, were there thyroid and glucose tests on the metabolic panel?

Yes, both were normal. (I love online charts)

I will consider the driving thing carefully. We live in the middle of freaking nowhere, though, so driving is the only option if I want to get anywhere. But I'll definitely be thinking about it.
posted by altopower at 8:03 AM on June 28, 2011

This is a fast ramp-up of symptoms. Get checked out now - if it *is* really bad, waiting can mean all the difference in treating it, whatever it is. GO NOW.

I certainly do hope it's nothing serious. Good luck!
posted by Citrus at 8:05 AM on June 28, 2011

Just to throw out another suggestion: Has your doc checked your B12 levels? Back in January I have having much of what you describe. My GP ran a vitamin panel and it turned out that my B12 was very low (123pg/ml). She started me on weekly B12 injections, and everything improved significantly over the course of 2 weeks.
posted by Cat Pie Hurts at 8:06 AM on June 28, 2011 [1 favorite]

Oh wow - the physical issues, the weakness in the legs (one leg, or both?) and trouble speaking clearly alarm me a bit, because those can be symptoms of stroke, TIA (transient ischemic attack, or mini-stoke) or other issues with the vessels in your brain. Not saying they are of course, IANAD, but you need to mention that to a doctor, ASAP. Here's the thing - you don't fuck with your brain. Ever. Better safe than sorry.

I've told my story many times here on ask.me, but simple weakness in my legs turned out to be a giant blood clot in my brain. I almost had a stroke (at 28) because I didn't take it seriously. Go to the doctor, NOW. Don't wait on this one. It's probably nothing that serious, but it's better to find out now and put your mind at ease.
posted by cgg at 8:10 AM on June 28, 2011

Depending on your eventual diagnosis, the driving decision may be out of your hands. If you have insurance that lets you see a neurologist without a referral, make an appointment and tell them you're having trouble driving. i.e., you need the next available appointment because your daily activities are compromised.

And please reconsider driving until you get seen. Not only could you harm yourself if you become disoriented, but you could also harm someone else.

Good luck. Please don't wait, and please keep investigating your symptoms with a new doctor.
posted by ImproviseOrDie at 8:56 AM on June 28, 2011

I get every single one of those symptoms, except the tremors, from my food allergies. Especially dairy. And I get tremors when my blood sugar drops. So while I do agree you should see a doctor ASAP, you might also put yourself on an Allergy Elimination Diet right away and see if that helps.
posted by MexicanYenta at 9:31 AM on June 28, 2011

Re: the driving

My dad occasionally gets vision-affecting migraines and bouts of vertigo. Rare occurrences for him, but they do happen. When he's driving and one starts, he pulls over to the side of the road to park immediately until it passes and he gets his bearings. Sometimes this means he sits and parks on the side of the road for an hour or more.

If you must drive, please do so carefully and pull over at the slightest hint of a symptom, just in case. It's better to get to your destination late and alive than not at all.
posted by phunniemee at 9:31 AM on June 28, 2011

I went to the ER with just one of your symptoms (aphasia - trouble speaking clearly) and it set into motion a whole bunch of tests and scans. I'll nth the call to get to urgent care / er nowish. They can do a ct scan of your brain there - and likely schedule an MRI from there. Do not wait until August.
That said - I've heard a lot of the same symptoms from B12 deficiency (brain fog, tremors, pain) as cat pie hurts mentions. I have a friend who recently started injections and it was life changing.
Good luck - find a new doctor - get seen now. Do not suffer like this until August.
posted by Wolfie at 9:48 AM on June 28, 2011 [1 favorite]

Just to drive the point home. Yes, plan a doctor's appt. for this week. If your doctor can't see you, then go to a different one.

(we expect you to make the phone call now, even before responding again in this thread.)
posted by Vaike at 10:17 AM on June 28, 2011 [2 favorites]

Have you changed anything about your meds? Timing, amount, with or without food, taking it with a different beverage? I say this because I took Prozac many moons ago and it definitely gave me a tremor in my hands - and it was variable depending on how I took it. I'm definitely not here to dissuade you from going to the doctor, but look both your meds up and see if there's any similarity between the listed side effects and your symptoms.
posted by jocelmeow at 10:38 AM on June 28, 2011

Response by poster: I called to make the appointment, and they're pushing me off to the end of July, so I left a voicemail for the nurse explaining what's going on...let's hope she can get me in sooner. Otherwise, I'll try another doctor. It was pretty sad that I had to have this post open to make sure I went through all my symptoms.

jocelmeow, nothing's changed with my meds. I did look up side effects and nothing jumped out at me as being related, so I don't know.
posted by altopower at 11:04 AM on June 28, 2011

"tremor in both of my hands (not constant, but more often than not)"

Do any of your relatives have a tremor? Typical onset after age 45 or so? There's a thing called Benign Essential Tremor or Benign Familial Tremor and it's ... just a tremor. It's a dominant genetic thing, it doesn't hurt anything (except your ability to eat soup in company), it has no other effects, is not a symptom of any underlying thing, etc. It can onset at any time, though is typically diagnosed in one's 40s or 50s; you can even be born with the tremor active. It is typically worse when you are overtired. (Or hungover.)

If you are sleeping poorly and these symptoms are mostly exhaustion-related, the tremor could be your first glimpse of a benign essential tremor, but a lot of doctors don't think of it unless you ask. (There are specific diagnostic criteria, it behaves a little differently than a tremor related to a "tremor disorder.")

Definitely get checked for the big scary stuff, but if it does turn out to be exhaustion/poor sleep/bad nutrition/whatever, and all the big scary tremor stuff has been ruled out, ask about the benign essential tremor. It'll save you years of freaking out that you have an incipient tremor disorder. :)
posted by Eyebrows McGee at 11:12 AM on June 28, 2011

Your set of symptoms might point at chronic Lyme disease.


Is it possible you've been bitten by a tick in the recent-ish past?
posted by burntflowers at 12:01 PM on June 28, 2011

Response by poster: Eyebrows McGee, as far as I know, no one in my family has that.

The other issue I forgot to mention is that the physical issues do tend to get worse if I'm hot, esp. the tremor and the muscle weakness. From what I've read, that seems to be a red flag for MS.
posted by altopower at 12:02 PM on June 28, 2011

Response by poster: burntflowers, I seriously doubt that I've been bitten by a tick, but I suppose anything is possible. I'll keep it in mind, certainly.
posted by altopower at 1:08 PM on June 28, 2011

Best answer: My doctor got me in same day for a *lump on my arm* (which turned out to be a bug bite. Smooth move, self. Smooth.). If your doctor can't get you in sooner than JULY for serious neurological symptoms, you need a new doctor.

If you must, go to Urgent Care and ask for a referral for a new Primary Care Physician in addition to whatever follow-up care instructions they have. There are also physician referral services that can help - I've used Lifespan, I'm not sure what's available in your area, but they were seriously helpful in pinning down doctors who are currently accepting new patients.

Another way to find a new doctor would be to ask friends/family for recommendations based on who they see. Certainly can't hurt.

Seriously, get to see someone as soon as you can.
posted by sonika at 2:14 PM on June 28, 2011 [2 favorites]

Best answer: IANAD but I know more than one sees on Grey's Anatomy and much much less than on House. Yes, you should have these symptoms evaluated. I doubt that you have a brain tumor ( the symptoms you describe are quite diffuse, somewhat episodic. I think is you had a tumor large enough,or causing enough pressure) to cause this myriad of symptoms you would probably be substantially compromised. I would write most of them off to depression/anxiety/meds but the vision and speech is a bit more troubling. Also, it is important to know if the weakness in the legs is "they feel weak"or there is an objective loss of strength or differential (loss)strength the two legs. I personally tend to minimize symptoms and ascribe them to everything but a serious medical problem. However, I would see a physician if I was having visual, speech, coordination problems or an objective loss of strength ( not the same as feeling weak) in a arm/leg/anywhere. You have expressed concern regarding your health before--perfectly understandable. Your physicians office maybe minimizing your concerns for a variety of issues, they maybe really booked or you may be understating your concerns. I would call and tell them you are very worried about your speech and vision, that these are changes that have taken place over the last 4 weeks and you need to see the Dr. at the earliest possible time. From a physicians point of view these symptoms would not usually be an "emergency" but certainly fall with in the category of "emergent" symptoms. Good luck and let us know.
posted by rmhsinc at 3:16 PM on June 28, 2011

I had similar symptoms to yours (without the tremors and with less extreme brain fog but with serious muscle weakness and pain) and it turned out it was a severe Vitamin D deficiency. Given that your profile has you in the Upper Midwest, it's not unreasonable to think it might be that. Did they test your Vit D levels when you had bloodwork done?

Is getting a new doctor an option? Yours sounds awful!
posted by lunasol at 4:13 PM on June 28, 2011

Response by poster: The nurse called me back and I have an appointment for tomorrow morning with the doctor. Woo! I do have a history of minimizing my concerns, and I was very careful this time not to do that...I read off my list in my original post and everything.

As for the Vit D, I did have it tested, and it was low. I've been on the supplements for maybe a month, though off and on because I keep forgetting to take it (oh, irony, you are a cruel mistress).

(As for the doctor situation, yeah, she's not that great, but we're going on a different HMO starting Aug 1, so we'll be switching at that point.)
posted by altopower at 5:58 PM on June 28, 2011

Have you been tested for food intolerance? I remember feeling very sick before my VEGA test revealed a severe sensitivity to wheat, dairy, lemons, garlic, salmon, coffee, wine (any alcohol actually) and 30+ other foods. I stopped eating these and within two weeks I felt much better. The brain fog disappeared, the tremors disappeared, I felt strong and focused.

See a naturopath to get the Vega test. It's painless and may help with the physical and mental issues.
posted by seawallrunner at 9:33 PM on June 28, 2011

Response by poster: Saw the doctor this morning...talk about a waste of time. As I expected, she didn't seem to think it was a big deal, and in fact chalked it up to "mommy brain." Raaaage. She did seem somewhat concerned about the hand tremors, and said if they get worse that she'll order an MRI.

So I don't really know where to go from here. Another GP? Neurologist? No one and hope for the best (not really)?
posted by altopower at 11:38 AM on June 29, 2011

I am glad you went, sorry you are disappointed in the physician. We can all speculate and make suggestions--I will make a suggestion re: next steps if you can be more specific re: tremors, vision, weakness and speech. Are the symptoms chronic or intermittent? Do other people notice and comment of the speech. What specifically do you mean by difficulty focusing--double vision, shimmering, blind spots, general blurriness, limited field of vision and is the difficulty focusing constant/intermittent. Re: weakness--both legs, is there an objective loss of strength, constant/intermittent, sensation changes, etc. Many of your symptoms can be attributed to fatigue, chronic anxiety or depression. A physician can rule out some possibilities by simply assessing the pattern and distribution of symptoms. Given that these are fairly new symptoms I would guess they are not environmental (food, allergies,toxins, etc) unless there has been changes in your interaction with the environment. In checking prior posts I noted you had a CAT scan not that long ago--if they did whole head (as they might) it would have shown the presence/absence of some of the possible neurological abnormalities/pathologies. If you wish to answer some of the questions I will try and answer your question. If you choose not to (perfectly understandable) I do not have an answer as to next steps.
posted by rmhsinc at 1:17 PM on June 29, 2011

Response by poster: rmhsinc, I'll do my best.

Symptoms seem to be chronic, though intermittent in their severity. The tremors are worse when I'm holding something, and are worse in my right hand. The tremors are also affecting my job--I'm a church organist/pianist, and the quality of my playing has declined. One or two people have commented on my speech, and many others have commented on my inability to focus on a conversation. As for my vision, it's almost like my eyes are trying to focus past the object, looking through it in a way. It's blurry and it's also occasionally doubled. It's chronic, but again, intermittent in how severe it is. It's definitely worse when I'm working on the computer or playing the piano or watching TV. Muscle weakness--I don't believe there's an objective loss of strength. They just get tired/weak/sore very easily, as in after walking for a block at a slow pace. No sensation changes, and it's entirely dependent on my activity level.

The CT scan I had was facial only, due to sinus issues. It did not include brain/whole head.

I forgot to mention in my update that the doctor did do a neurological exam, which she said was totally normal.
posted by altopower at 1:56 PM on June 29, 2011

I am going to email you through AskMeFi with a few more questions. Nothing embarrassing, just want some clarity on history etc. As you know I am not a physician but I must admit your symptoms are perplexing and certainly must be frustrating for you. I would like for you to get some clarity and direction.
posted by rmhsinc at 6:06 PM on June 29, 2011

I suggest a second opinion, ASAP. It seems that you can't quite convince your doctor that, whether the issue is severe or not, the symptoms have to stop. Search around until you find a doctor who understands that.
posted by Citrus at 6:18 AM on June 30, 2011

Best answer: I would encourage you to seek a second opinion as well, either from another GP or from a neurologist. Please print this post and bring it with you, so you don't forget any of the important details. Maybe highlight your in-thread contributions on the paper (like with an actual highlighter), too -- there are important extra details there, like symptoms worsening in the heat, other people commenting on speech problems, inability to do your work properly, etc.

the doctor did do a neurological exam, which she said was totally normal.

For whatever it's worth, I have MS and my neuro exams are always normal. With my vision problems, I saw 3 ophthalmologists who couldn't find anything wrong before going to a neuro-ophthalmologist who ordered an MRI that showed abnormalities. My neurologist does a neuro exam on me every 6-12 months and says everything seems normal, but because I live in my body I can tell him about hand tremors and vision problems and fatigue that aren't obvious in a neuro exam, and that aren't "normal" compared to my past experience.

I know it's overwhelming to have to push for help, especially when you're fatigued and feeling fuzzy. But if something is going on with your health, it would be best to catch it now, while it's still early. Having a normal neuro exam is good, because it means it's still early. But it doesn't mean you should give up on getting more answers. Keep advocating for yourself, and get a 2nd opinion. Good luck!
posted by vytae at 8:37 AM on June 30, 2011

Response by poster: I ended up calling the doctor back yesterday afternoon and leaving a message telling her I wanted the MRI now, rather than waiting till later. No call back as of yet.

Felt awesome first thing this morning, now deteriorating. Tremors in my legs as I went down the steps just now at work.

vytae, thanks for your input. I had the same thought about catching it now, but the doctor said yesterday that if it is MS, it didn't matter whether it was caught now, or 2 years from now. That doesn't sound right to me.
posted by altopower at 11:29 AM on June 30, 2011

Sorry if this is harsh, but it sounds like your doctor is an asshole. Don't put up with it--get thee to another doctor.
posted by litnerd at 1:04 PM on June 30, 2011 [1 favorite]

...the doctor said yesterday that if it is MS, it didn't matter whether it was caught now, or 2 years from now.

There's some merit to that statement, but it's not the way I would have put it. MS has no cure, and it generally gets worse or better on its own seemingly random schedule, regardless of what interventions are applied.

That said, there are thing that can be done to mitigate the symptoms. If you have MS (which we really don't know yet - I hope you don't), you should be exploring those options sooner than later - if only to make things less painful and less uncomfortable.

I'm with litnerd. I think that your doctor seems to have a very blase attitude toward your care, and an overall poor "bedside manner" in dealing with you generally. Start looking for your second opinions now, and see if you can find a doctor who's frankly more willing to act like s/he cares about your condition.
posted by Citrus at 1:48 PM on June 30, 2011

the doctor said yesterday that if it is MS, it didn't matter whether it was caught now, or 2 years from now.

That's so wrong. You should absolutely see another doctor. It's true that there is no cure for MS, but there are drugs available that make attacks less frequent and actually slow the progression of disability. Would it make a difference to be on them now vs. in 2 years? It's impossible to say, since we can't do both options and see how things turn out. But current recommendations are that anyone with diagnosed MS should be taking one of these "disease-modifying therapies." Your doctor sounds like they're working with information that's 10-20 years out of date.
posted by vytae at 10:42 PM on June 30, 2011

New doctor. For so many reasons: she's dismissive, not timely, rude, insults you by saying 'mommy brain'. For those things alone, you should reject her. You can also go to a different doctor before August, that's still a long time. I would just call in to the HMO and set up an appointment with a different doctor. Tell them you are switching doctors, they don't need to know that you are leaving at the end of the month. That is none of their business, your service with them is paid up through July. We're here backing you up.
posted by Vaike at 4:53 PM on July 1, 2011

Response by poster: The order is sent in, and the MRI place will be calling me Tuesday to set up the time. Hooray for progress! After the results are in, we'll go from there.

I'm trying to fight this sinking feeling I have...
posted by altopower at 10:26 AM on July 2, 2011

How did it go, Altopower?
posted by Riverine at 12:06 PM on July 10, 2011

Response by poster: The MRI isn't till Thursday...there was a delay. Thanks for asking, though!
posted by altopower at 10:59 AM on July 12, 2011

Response by poster: I doubt anyone's going to read this, but for whoever's interested, the MRI results came in on Monday. I have "multiple lesions in the frontal lobe", but they don't yet know what's causing them. I have an appointment with a neurologist in a couple of weeks, and I'm assuming there will be further testing/evaluation at that point.

Thanks to all of you who responded to my question and gave advice...I appreciate it!
posted by altopower at 6:27 AM on July 20, 2011 [3 favorites]

Still reading, still interested in your health, altopower! Please continue to keep us updated. Thinking of you.
posted by litnerd at 8:50 AM on July 20, 2011

Me too. I'm glad you're finally starting to get some answers.
posted by something something at 9:32 AM on July 20, 2011

I've also been watching. So glad you pushed for the care you needed. I'll be hoping the best for you.
posted by moira at 1:22 PM on July 20, 2011

Updates also appreciated--thanks for keeping us posted and hoping further testing is uneventful.
posted by rmhsinc at 2:57 PM on July 20, 2011

Chalk me up as another one who is happy for an update. I'm really glad you were able to advocate for yourself to get that MRI. Good luck with the neurologist appointment -- I'll be sending good thoughts your way!
posted by vytae at 11:53 PM on July 20, 2011

Response by poster: Thanks guys! I'm happily surprised that people are still reading. After a really crappy week which has not only included this issue, but also the fact that my husband, who works for Borders, will be losing his job...it's nice to get support, even from strangers.
posted by altopower at 1:10 PM on July 21, 2011

Any update from the neurologist appointment? It sounds like you've got a full plate, but keep reminding yourself (and tell your husband to remind you too!) that you have to prioritize your own health. One thing that I've noticed (especially in the US healthcare system) is that you are your only advocate. At times you will feel pushy, stupid, embarrassed, frustrated and disappointed, but you *must* keep following up on your own behalf.

My best advice to people going through these situations is to start a detailed diary -- your own records, written in the form of a simple chronological journal. Just make a new Microsoft Word document, and start typing the history as you remember. If you can see specific correlations (i.e. worse in heat), include those. Include symptoms that other people have noticed that went undetected by you. After you're caught up to the current time, make sure you update the diary with each new bit of information. After each office visit, write down the name of the doctor, date, what was discussed, what to watch out for, what next steps to take. As you do research or notice other things, write down your questions in the journal.

Print out and bring this document to every major meeting - a new doctor, a new test, whatever. Your job is not "convince them there is something really wrong with you" it is "find a cure or a name for my illnesses." It's a subtle difference, but that mindset reminds you that YOU are YOUR priority.

Good luck, we're hoping for the best for you!
posted by barnone at 8:27 PM on July 28, 2011 [1 favorite]

Response by poster: My appointment is this coming Friday, so still a ways to wait. My speech problems are worsening, unable to think of the right word (flugelhorn is my go to stalling word), and I'm also substituting words (e.g. three instead of free, and last night I kept saying chocolate when I meant licorice)...these symptoms worsening worsening really worries me.

Barnone, I do have a timeline/journal that I've been working on...great suggestion!
posted by altopower at 1:17 PM on July 31, 2011

Thanks for continuing to post. I, and I am sure others, are hoping for the best possible outcome and an update when appropriate. I am glad you followed through--I wish, for you, your appointment was tomorrow.
posted by rmhsinc at 11:51 AM on August 1, 2011 [2 favorites]

Response by poster: I should mention the possibilities my doctor laid out for me when giving me the MRI results. She said it could be migraines, vasculitis, high blood pressure (which if she'd look at my chart, she'd see I've never had), MS, or another demyelinating disease. I know none of you are doctors, but if you (rmhsinc esp.) have any ideas on this, I'd be interested to hear. To review, the MRI showed "multiple frontal lobe lesions."

Oh, and re: migraines, I don't believe that's what's going on. I don't have photo/phonosensitivity or nausea, and my headaches have actually decreased in the past week or so.
posted by altopower at 2:46 PM on August 2, 2011

I'm here listening...lesions make me think MS, but I don't know more. If MS, look into big doses of Vitamin D.

Not sure I understand...did the doctor look at the MRI and say only that? It is time to get referral to a neuro, if so. My neuro said hospitals and GPs interpreting brain scans is crap, which turned out to be quite true.
posted by Riverine at 6:45 PM on August 2, 2011

Also, it your gait impaired by the weakness in your leg? The more I re-read this thread, the more I want you out of a GP's care and into a neurologist's....
posted by Riverine at 6:51 PM on August 2, 2011

Response by poster: Riverine, the MRI results were read by a radiologist, then sent to my doctor, who read them to me. There's likely a lot more information on the radiologist's report that I haven't been given, but I will hopefully get more on Friday when I see the neurologist for the first time.

As far as I know, my gait isn't impaired...the muscle weakness just makes me fatigue more easily/quickly.
posted by altopower at 6:24 AM on August 3, 2011

Response by poster: Wow, this was a long day.

So, first things first...MS has been pretty well ruled out. I have one more test in a couple of weeks, and if that's normal, then it's definitely not MS. The lesions that I have are inactive, meaning they're not doing anything like growing or causing damage. The neuro referred to them as non-diagnostic. So, it's possible that this is damage left from a head injury I had when I was 6, or it could be just completely random and unrelated to my symptoms. She took a bucket of blood from me, and is running a boatload of tests (listing (sort of) here for interested parties: angiosomething enzyme, b12 level, ANA something, sed rate Westergren, Lyme disease, and copper levels), so hopefully those will shed some light on the symptoms that I'm having.

I am cautiously optimistic about this... :)
posted by altopower at 2:30 PM on August 5, 2011

Crossing my fingers that it all continues to be good news for you!
posted by MexicanYenta at 3:26 PM on August 5, 2011

Response by poster: OK, now I'm confused. What I'm reading tonight indicates that even inactive lesions can be MS, and can be specifically associated with primary-progressive MS. So, once again, I don't know what to think. I did send a message to the neuro I saw today, so I'll hopefully hear back from her on Monday.

I also did the visual evoked potential/response today, which the tech strongly indicated was normal. C-spine MRI in 2 weeks.
posted by altopower at 8:29 PM on August 5, 2011

Thanks for the updates--I wish you were completely reassured. FWIW--do not read anymore. Hope it is a good weekend--enjoy yourself, your family and friends. Updates appreciated until resolution.
posted by rmhsinc at 9:01 AM on August 6, 2011

Response by poster: The lab test results are starting to come in. B12 is on the lower end of normal (326, normal is 247-911), but still normal. Sed rate, however, is another story. Normal is 0-20, mine is 46. From what I've read, it indicates inflammation of some sort, but is very non-specific. Tests that are still out: ANA, copper, angiotensin something, and Lyme.
posted by altopower at 6:20 PM on August 8, 2011

Response by poster: The rest of the tests are in: Lyme is negative, angiotensin is fine. Copper levels are elevated at 1.68, and ANA is "weakly positive" at 1.5. I called the doctor's office to find out what this all means, but they can't get back to me till tomorrow, and Google has been unhelpful.

So, elevated sed rate, positive ANA, and elevated copper. Go, MeFi, go! :)
posted by altopower at 10:22 AM on August 9, 2011

Way to refined and technical for me--Take Care
posted by rmhsinc at 8:32 AM on August 10, 2011

Elevated copper is also likely to be a non-specific change due to inflammation. The weakly positive ANA could suggest some form of autoimmune disease, but is also not unknown in healthy people and might be a red herring.

I'm another person still reading and hoping you can find some kind of resolution and feel better.
posted by *becca* at 11:39 AM on August 14, 2011

Response by poster: No resolution as of yet. Bloodwork was repeated last week, and the sed rate improved while the ANA increased. So, she gave me a referral to a rheumatologist (damn, that's hard to spell). B12 has helped my memory some, thankfully, but everything else is the same or worse.

I'm trying not to feel discouraged, but I just have so much stress going on right now. Husband losing his job on Wednesday, all this health stuff, plus some psychiatric stuff that may or may not be related to the physical health stuff...blah.

rmhsinc, thanks for checking in...it's appreciated.
posted by altopower at 1:14 PM on September 12, 2011

Thanks for the updates, altopower. I'm sorry you still haven't gotten any answers--but I'm thinking of you, as I'm sure other mefites are.
posted by litnerd at 5:45 PM on September 12, 2011

Here's a funny thing - in cases of "unspecified inflammation", it's possible that an anti-inflammatory drug can help with the symptoms. It often doesn't deal with the root cause, though. So, using them can be a double-edged sword, since once you reduce the inflammation, you lose whatever diagnostic hints you have to finding the real problem.

The human body can be so frustrating sometimes.

Hang in there!
posted by Citrus at 5:42 AM on September 13, 2011

Response by poster: Citrus, it's interesting that you say that. When the blood was taken (last week Thursday), I had been on 1600-1800mg/day of ibuprofen for a partially torn rotator cuff for 6 days. I hadn't thought about the effect that would have on the test results, but now I'm wondering. Maybe the sed rate was artificially decreased due to the ibuprofen? But the ANA still increased...maybe it would have been more increased without. I will be sure to mention that to the rheumatologist when I see him next month.

By the by, for some reason, this clinic doesn't report ANA results as a titer, just this random number. That sucks. So, I have a call in to find out whether they can somehow let me know how 1.7 converts to a titer format.
posted by altopower at 12:01 PM on September 13, 2011

Response by poster: Update:

I was diagnosed with migraines last week. Hooray! Now, we're finding the right regimen for me.

I also saw the rheumatologist on Thursday and after taking a bucket or so of blood, most of the tests are back. Most are normal...there's no indication of lupus, RA, or any of the usual suspects. However, the ANA rose again (this is now the third straight rise), and while it's still in "weakly positive" territory, it's a concern. The other abnormality was in the ANCA vasculitis test, which was "equivocally positive". Apparently this can indicate Wegener's granulomatosis, of which the major symptom can be chronic sinusitis, which I've struggled with for years. So, we're still waiting on a few more tests, but right now, it stands that I'll go back in 3 months and repeat some of the labs and see where we are. There's no evidence of major organ involvement that worries him, so he feels it's okay to wait.

Thanks to all of you for your advice over the past few months!
posted by altopower at 3:00 PM on October 22, 2011 [2 favorites]

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