What is this mystery illness?
June 15, 2015 4:54 PM   Subscribe

I need help diagnosing my condition! I’m going through some extreme (for me) health issues that are undiagnosed for around 5 years. The symptoms (listed below) started super mild (a tingling in my left hand) and have been getting worse gradually but never got better, there was never a period of relapse.

I live in Montreal (Quebec) therefore my access to sort-of-universal health care is dependent on a series of factors that I don’t control. So, for example, my neurologist asked for a new MRI but I’ll probably only be able to get it next year. Also a doctor suggested that I get a second opinion from another neurologist but it’s very difficult to get a neurologist, long wait lines (from 8 months to 2 years), and to get a second one is even harder (the doctor suggested that I lied about already having one - seriously). But I’m persevering. Tips on how to navigate Quebec health care system more efficiently are welcome.

Finally I got on the priority list for a family doctor and I’m hopeful that I’ll be able to get one in the next couple of months. I want to get more prepared this time so to avoid “it’s all in your head” situations, and to at least get more informed and ask useful questions. The local culture here is very different from my home country (where doctors explain what they’re thinking) and feel I’ve been unlucky so far with doctors who act dismissive and condescending. Need tips on how to get doctors to take me seriously.

So, hivemind, any ideas of what this mystery condition might be? MS is an obvious suspect, but I’m hoping that are other possibilities. What other specialists should I try to see? An haematologist?

TD/DR: What could this mystery illness be besides MS?

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Female, latina (mix of everything, african, caucasian, native), 45 years old. 15 years in Canada.

Symptoms:

3 + years
• fatigue
• low libido
• acid reflux
• dry skin in feet and elbows
• muscular pain, joint pain (especially in feet, lower legs)
• occasional blurry vision
• face rash
• troubles focusing (brain fog)

1,5 years
in addition to all of the above
• shortness of breath
• back pain (left side)
• tingling/numbness/heat sensation left part of the body
• mood swings (mild)
• thinning hair

3 months
in addition to all of the above
• speech slurring
• difficulty thinking
• difficulty typing
• difficulty writing
• dropping objects
• tripping
• mood swings (not so mild)
• tingling in whole body, with frequent spasms
• constant (but intermittent) blurry vision
• soreness in whole body (similar to the flu)
• more hours of sleep, constant sleepiness
• zero libido

Things that almost didn’t change: weight (actually I gained some weight, but it could be due to lack of exercise), menstruation.

Tests that came back normal: basic blood work, thyroid, Cat-Scan, Hep, Mono. No inflammation detected in x-rays.

Rheumatologist says I don’t have immunodeficiency diseases. Neurologist says nothing (I’m trying to get a second opinion from another neurologist). Endocrinologist says I’m fine on the thyroid and parathyroid fronts.

Not totally bad but slightly: a mild anaemia, a mild iron deficiency, MRI shows some inconclusive lesions in brain white matter. MRI done in December last year, before hell broke loose.

Lost my 10-year job in which I was a top performer due to poor performance a month ago.

Started taking massive doses of sublingual B12 around two months ago, still no definite changes. I decided to do this because this looked like textbook symptoms of B12 deficiency, and it seems that it’s common enough that B12 deficiency goes undetected in tests (via; there are many sources for this).

I stopped taking pantoprazol (that I took for 5 years) because of links to B12 malabsorption and oddly my acid reflux is almost gone.

TD/DR: What could this mystery illness be besides MS?

Questions? email: mysteryillness@disposable.com or post in thread. I can post tests results if it helps.

Thank you for your help, I feel my life is slipping away from me.
posted by anonymous to Health & Fitness (29 answers total) 6 users marked this as a favorite
 
Oh, honey. This sounds so awful. I really hate the human body sometimes. What a malfunctioning, rusty, junky-ass piece of work is man.

Your most recent symptoms are truly alarming, and I'd second what AlexiaSky suggests. My following suggestions are more long-term stuff mostly relating to your previous symptoms.

Have you had allergy tests? Allergies can be a major problem, and if they get bad enough you can feel like you're dying. It sure wouldn't explain everything, but it might explain a lot.

It may be that you don't have any one major illness going on, but complications from one relatively minor illness (like an allergy, let's say) led to another illness and another and now your immune system is weak and that leaves you open to even more problems, until you end up in a bad, bad way.

FWIW, for 20 years I've had episodes of everything in your 3+ and 1-5 year lists except thinning hair. I just have lousy health, and no doctor has ever been able to find any one cause. It's (supposedly) lots of totally unrelated things. Heart issues, gut issues, eye issues, sinus problems, bone issues, on and on. Plus I'm a hypochondriac and a panicky type, so some of it is probably in my head.

In terms of trying to feel better... I experienced a period of greatly improved health after I moved out of my despised hometown and got honest with myself about being transgender. I was much happier, for a while, and I don't know if it was a decrease in stress or the change of location or what, but my health substantially improved for years. Is there any huge problem in your life you're not dealing with? Is there anything you can do to substantially lower your stress? If so, I'd say try it. If there is anything you're repressing that could be ripping you apart, now is the time to face it.

See a therapist. Not because you're nuts, but because the stuff you're going through would traumatize anybody and a shrink can help you with that. They can help with panic and despair and depression, and if there is anything psychosomatic in all this they can help you figure that out.
posted by Ursula Hitler at 5:19 PM on June 15, 2015 [3 favorites]


If you have even slightly dark skin and live in the North, get your vitamin D levels checked. My husband is of Mediterranean descent and he is always low without supplementation. It can cause muscle aches, fatigue, and a whole host of other symptoms, as it's a hormone, really, not a vitamin. Don't just start taking it on your own, get it tested, as if it's very low, they give you a prescription for high amounts to be taken on an 8-week course, along with daily supplements as directed.
posted by Marie Mon Dieu at 5:29 PM on June 15, 2015 [2 favorites]


Sorry, Mystery, it sounds a lot like my symptoms when I got diagnosed with MS. Has that already been ruled out? I didn't have all those symptoms, but did have:
tingling/numbness/heat sensation left part of the body
• speech slurring
• difficulty typing
• difficulty writing
• dropping objects
• tripping
• tingling in whole body, with frequent spasms
• constant (but intermittent) blurry vision
Lesions will show up in an MRI. There's also a spinal tap test which is the determinative one, so you might ask about that.

I was 47, white, female (old for MS diag, but the majority are women, all races). Canadians are probably more likely to get MS because supposedly the farther you are from the equator, the higher the incidence.
The opthamologist was the one who diagnosed it for me, because of the eye issues (I became basically blind in one eye, and colorblind. That has ALL RESOLVED-- no vision issues now.)

I have been on medication since, and haven't progressed much (yay). The presenting symptoms were the worst I ever had, and went away after treatment. So while MS is really bad for about 20-30%, the rest of us have access to good meds that were unknown 20 years ago. So it's not a death sentence or anything most of the time.

NARCOMS is the big MS society information source, if it turns out to be that. Here's the Canadian society with clinical trial info: https://beta.mssociety.ca/participate-in-research/introduction-to-clinical-trials

Lupus is another possibility. It sure does all sound like an auto-immune disorder, one way or another. Immunologists might be another specialist who can help.

I live in the States, and because the medication is SO expensive for MS, the insurer wouldn't cover it (they have to now, with Obamacare, fortunately), I started getting into clinical trials to get the meds for free. It's worked pretty well. Can't help you with the medical system, but you might see if there are any research medical schools around. You can generally bypass a lot of the bureaucracy that way. However, you're also getting experimented on!

Whatever it is, this is really a good time for these odd disorders-- plenty of treatments. Hang in there. Not a doctor here, of course, but endocrine and immune disorders often have these odd clusters of symptoms.

\Oh, and it won't hurt to double up or triple up on Vitamin D. (The "sun" vitamin.) Deficiency has been linked to several of these weird disorders.
posted by pippin at 5:46 PM on June 15, 2015 [6 favorites]


Have you had any potential tick exposure? Can you ask for tests for tick-borne illnesses (Lyme, babesiosis, etc.)?

The rheumatologist -- did they say no immunodeficiency, or that it's not autoimmune at all? What bloodwork did they run? Did they run for celiac?

Do you have worse fatigue after exertion? If so, chronic fatigue syndrome could be a possibility. A shitty one, but a possibility.

I agree on getting your vitamin D checked; it's very common to be low regardless of your background.

Just to confirm, your endo ran TSH as well as T4, right?

Need tips on how to get doctors to take me seriously.

In general, I find remaining calm and being extremely specific about symptoms is the best way. If you can provide specific details about your symptoms, it helps -- so not "a hand tremor" but "Several days a week, I have a severe tremor that makes it difficult to hold objects." Be specific about how much you are sleeping. Be very specific about how this has affected your daily life, and esp. your ability to hold a job.

Also, don't dwell too much on other doctors dismissing you when you explain what's going on to the new doctor. It's silly but it is possible that new doctors may take you less seriously if they feel like other doctors have been unable to figure out what's going on.

And finally, if you can, check with your family. I've been amazed, both at what pops out of the family history when I mention symptoms to my parents, and at how much more seriously my doctors take me when I have a family history of Condition X.

Good luck -- this sounds extremely stressful and I hope they can help you figure everything out.
posted by pie ninja at 5:46 PM on June 15, 2015 [3 favorites]


Is it constant or episodic? You could have a range of things at this point and they've basically ruled out the major 75-80% most likely, so after this, they're having all the rarer and rarer weird conditions which is frustrating and specialist work and simply takes time. If it's episodic, you definitely want to go to an ER at a large hospital during an episode and say you are having brain issues, because they will likely prioritise you for an MRI or CAT depending on your symptoms and if it's a transient thing, the earlier you go at the first signs of feeling strange, the more likely they will catch something in the scan.

But in the meantime: yes, you have probably got a while to go to pinpointing a diagnosis and more importantly an effective treatment for what's going on. Focus on what you can control, good nutrition and gentle exercise and please please consider some therapy because accepting a chronic illness stage is very hard when you're in weird health limbo and it sounds like you have job stress too - just a huge amount of stress which can make you feel physically worse and drain off your energy for all the stuff you need to do. And most frustratingly of all, especially as a woman, stress can be used to dismiss your health issues. If you preemptively get a therapist and deal with it then you can confidently tell the snotty doctors who want to dismiss this as "overwork" that no, you are psychologically great, something is physically wrong. And chronic illness is - it's a big life change, unexpected and unwanted.

I have Something that is officially unknown causes because after three years of tests, they've ruled out the 99% known causes from cardio, rheumatology, neuro and immune, and now treat the symptoms. The good news is that three years on I'm mostly healthy thanks to a handful of pills every day. Chronic illness with an idiopathic illness is a PITA, and I was super lucky to have episodes documented and taken seriously enough in the ER and then get a neurologist who saw my case as an interesting puzzle, not just a complaining woman. It's taken a while but I'm okay with not having a diagnosis now. It helps that the meds clearly make a difference - stroke free for nine months! - and I figure someday the rheumatologist will say oh hey guess what, we now call what you have Runplestilskinese. I won't be who I was, but I like who I am now and if I get - when I get sick again, it's scary but not terrifying now. It doesn't get better but it does become a new okay.

Document a lot. Keep a health log of symptoms, be calm and professional and politely informed with doctors. They don't like upset patients, they want people who ask educated questions and who work with them. If you get a crappy doctor - oh man there are some awful doctors out there - work hard to change doctors if that's your primary. I had two horrible doctors, one I refused to see again and switched with delays in treatment that were worth never seeing her again, the other I was able to request a referral up to the senior because he was wrong and I was polite about it. Learn how your national health service works, what you can access and patient rights. Learn it while you're healthyish, not when you're tired and in the doctors office trying to get an appointment scheduled and they're saying no. Ask a trusted friend to accompany you as a patient advocate if you can't remember all the questions you need to ask at meetings or it's too much to also take notes.

And always always be nice to nurses, technicians and the office staff. If you have a chronic health issue you will see them a lot and they can make your medical visits easy or horrible.
posted by dorothyisunderwood at 5:49 PM on June 15, 2015 [5 favorites]


Marie, good point. Vitamin D deficiency is implicated in MS but also other things. And now that we're all trying to avoid skin cancer and wearing sunscreen, we very likely aren't getting enough Vitamin D. I was thinking the same thing!

Mystery-illness, find out what the prescription dose is for D, and buy a good supplement and take half or 2/3ds of the prescription dose until you can get a doctor Rx. You might see quick improvement. Let's hope it's something that simple! And it very well might be.
posted by pippin at 5:50 PM on June 15, 2015


I have no idea how the healthcare system works up there, but I found the most important thing in getting doctors to take you seriously is to start off with the most worrying and concrete/physical symptoms. From what you listed, I would lead off with numbness/tingling, tripping, slurred speech and difficulty writing/typing. Everything else is significant and should be brought up eventually, but mentioning these symptoms should lead to an MRI, which is really what you need. I also think going to the ER would be the best thing right now, and you definitely need a different neurologist.

I'm very sorry that you're dealing with this. I was recently diagnosed with MS, so I've been reading a lot of forums and information about MS. There are lots of diseases and combinations of diseases that mimic MS, but if you want to rule it out, I think getting another MRI and having a comprehensive neurological exam would be best.
posted by dangerbird at 5:50 PM on June 15, 2015 [2 favorites]


To counter that, I have definitely not got MS, and I have had almost all of your symptoms along with others. There just isn't enough information only possibilities. MS is relatively straightforward to diagnose and rule out, so if they've said it's not MS, unless you have a family history, keep looking.

Have you considered migraines? I didn't realise that I was having migraines until they stopped because I'd gotten so used to the background hum of pain and they weren't classic aura migraines most of the time. You can have migraines for 3-4 days at a time and if migraine meds provide relief from symptoms, you might have one of the odder types of migraines.
posted by dorothyisunderwood at 6:04 PM on June 15, 2015 [1 favorite]


You could try seeing a naturopath. I'm not sure what it's like in Quebec but naturopaths are licensed to prescribe antibiotics, and can also request clinical testing here in British Columbia.

So a lot of people go to naturopaths to speed up the process of getting a diagnosis. One particular scenario is getting tested for Lyme disease - naturopaths can send blood samples for testing in the US. If you are diagnosed with Lyme disease naturopaths can prescribe appropriate antibiotics.

So it may be worth paying out of pocket to get quicker access to more robust testing.
posted by Nevin at 6:04 PM on June 15, 2015


Ophthmalogists are another specialty that can probably get you diagnosed if you're having vision problems. Optical neuritis might account for the vision problems, and they can see that in an eye exam (an MD doctor, I mean). If you can't get into a neurologist, try that, as Treehorn suggests. Vision problems are often neurological.

The worst situation is not knowing, which is where you are now. Once you have a diagnosis, you'll know so much more what to do!
posted by pippin at 6:05 PM on June 15, 2015


MS probably has a small genetic component, dorothy, but family history isn't determinative. (No one in my family had it. Women with MS tend not to have a family history-- men do, go figure.) It's not that hard to diagnose, but it's expensive to diagnose (MRI and spinal tap), so you have to keep agitating to get the real tests. OP said she did have an MRI that showed lesions, which can be many things (including migraines, good call!), but are always there in MS.

Hope it's not MS, but something like a vitamin deficiency!
posted by pippin at 6:10 PM on June 15, 2015 [2 favorites]


Not totally bad but slightly: a mild anaemia, a mild iron deficiency

Speaking from personal experience, even mild iron-deficient anemia can fuck you up pretty badly and would cover a lot of those symptoms.

Plus, if you're deficient in one nutrient, that's an indicator that something is wrong with your diet (or with your body's ability to use nutrients) and thus you could very easily be deficient in other vitamins and minerals that they didn't test for. Additional nutritional deficiencies (especially vitamin D) would cover most of your other symptoms.

Do you take a broad multivitamin/multimineral? Preferably in liquid or chewable form? (Hard vitamin pills are often pooped out mostly undigested.)

Are your fingernails brittle, thin, or otherwise easily torn? For me that's always been a very reliable indicator that I've either forgotten to take a multivitamin/multimineral for a while or it's not digesting properly.
posted by Jacqueline at 6:26 PM on June 15, 2015 [1 favorite]


[A few comments deleted. Let's not start off with misrepresenting things to ER doctors. Thanks.]
posted by LobsterMitten (staff) at 6:27 PM on June 15, 2015 [1 favorite]


Sure sounds like MS (which doesn't always progress/remit). If Vitamin B12 deficiency is the issue, high possibility it wouldn't respond to oral/sublingual B12, but that seems unlikely given normal bloodwork. Lupus also sounds like a possibility.
posted by i_am_a_fiesta at 6:55 PM on June 15, 2015 [1 favorite]


It could be MS or not. If it is, they have many treatment options available. I am in the U.S. So I am not sure how the Canadian system works but I would try the eye doctor route. If you are diagnosed with optic neuritis that may move you up the line.

I have been dealing with the MS/Not MS thing since 1987. I have positive Lumbar Punctures,Optic neuritis, a well documented relapsing remitting history, but only one lesion in my corpus collasum(?) area of my brain. Every time I have changed Doctors due to moving I have been undiagnosed and then rediagnosed.

I was rediagnosed two years ago at the MS Center at UCSF and undiagnosed at the MS Center at OHSU last fall. WTF is all I have to say about that awful experience.

I am waiting for the results from two mri's I had on Friday. I have been in a flare up for a month. Vision blurred for a bit with much eye pain and walking that was so bad the doc just said "o my god that is terrible". Is my new doctor, who is not convinced it is MS, a big dummy? I don't think so. Obviously there are many things besides test results in making a diagnoses of MS. They sometimes refer to it as a diagnosis of exclusion. They rule out all the MS mimics and you are left with MS. I have been tested for all of them more than once.

I hope you don't end up in this boat with me, but if you do, even for a short period of time, the things I do to stay sane, relatively happy and not chronically pissed off at my neurologist are - I tell the truth of my experience. I do not exaggerate my symptoms , and I try not to minimize them either. I take my meds as prescribed, I exercise to the best of my ability each day. I stay engaged in life. I allow myself to feel sorry for myself but I don't live in that state. Those feelings pass and I find things to appreciate.

The place your in, in this process of finding out what is going on, sucks. It requires deligence and more patience than you think you will ever be able to muster. For me the patience always seems to manifest in some way.
Take care.
posted by cairnoflore at 7:36 PM on June 15, 2015 [5 favorites]


Another avenue might be to see a rheumatologist, who is familiar with many autoimmune diseases, such as rheumatoid arthritis, lupus, and other autoimmune disorders that are much more common in women. At least you might be able to have tests that rule some of these disorders out. Rheumatology and neurology are both specialties that pay poorly (in comparison to doctors who "do procedures", at least in the US) and thus attract really smart and curious brainiacs who are not in medicine for the money. Their core skill is diagnosing complex conditions. They relish puzzles and tough cases. They are detectives, and you need a detective.

Diagnosis is the key skill physicians are trained to do, though some are much more skilled than others. If possible, ask your primary care physician to refer you to a physician in a specialty (rheumatology, neurology) that is focused on diagnosis. You don't know how to treat something until you know exactly what it is. And I agree that MS is a possibility, but so is lupus or another, much more obscure condition. The chorus of anecdata above attests to the fact that diagnosing medical problems is difficult and complex. You need an expert diagnostician for that.
posted by citygirl at 8:51 PM on June 15, 2015 [1 favorite]


Food intolerances could cause all of your symptoms. Your digestive issues could have triggered food intolerances or the other way around. Start taking probiotics and start a food journal, where you write down what you eat and your daily symptoms. Some symptoms won't happen until a food hits the digestive system and might not be obvious because of the delayed reaction. You want to ask your doctor for a blood test that will check for food allergies.
posted by myselfasme at 8:58 PM on June 15, 2015


Ages ago, a doctor prescribed low-dose thyroid supplement, even though my blood test was in the normal range, and it was a huge help. Minimal side effects.

I have had chronic auto-immune issues for quite a while. About 7 years ago, I realized I was likely lactose intolerant (gas, bloat, blah). Giving up dairy improved my total health - less inflammation, less joint pain, generally felt better. I miss pizza and ice cream, but it's worth giving them up.

The thing that has worked for me is to have a doctor who is committed to solving the puzzle.

And take Vitamin D.
posted by theora55 at 9:22 PM on June 15, 2015


Update from the anonymous OP:
Vitamin D - Yes, I had a deficiency (have?), took high doses for a month, no change in symptoms. Will restart with the OTC supplements just in case.

No tick exposure.

Rheumatologist said, "I doesn't look like you have any autoimmune diseases."

Endo ran TSH as well as T4.

I'll see an opthamologist , great tip, thanks.

"check with your family" - my Mom had some of these symptoms (minus the cognitive stuff) around my age, she was diagnosed with neuritis, treated the aneamia with iron and B12 and recovered. I informed doctors of that.

"write down what you eat and your daily symptoms." My symptoms never change, they are consistent day-to-day. Then again, maybe my diet also doesn't change much. I cut wheat for a while, made no difference. I am lactose intolerant, not crazy intolerant, but I almost don't ingest lactose anyway.
posted by LobsterMitten at 9:37 PM on June 15, 2015


I'm going to skip the backseat DDx because everyone seems to have done a pretty good job of suggesting things to try and to research. So I'm going to advise you on dealing with doctors. I've been ill and in intractable nerve pain for nearly 20 years and I've been to multiple doctors, specialists, gone to famous out of state clinics, had 5 MRIs, 4 Xrays, two nerve conduction/emg studies, skin biopsy, numerous tests for small fiber neuropathy, two autoimmune panels, 2 rounds of PT, nerve decompression surgery, and finally 6 months ago I was tested for and diagnosed with late stage Neurologic Lyme disease.

The first thing to remember is that you deserve the best possible care and nobody is more interested in getting you that care than your are, you are your own best advocate. I'm in the US so my understanding of the health care system you're dealing with is pretty weak, but since MS is on the table that is the place to start. If there are any neurologists that specialize in MS track them down and get on a waiting list. Keep seeing other doctors if you can while you wait. Get the records from the rheumatologist and find out if they did any actual tests and what the results were. If you can, get copies of all of your medical records so that you'll never have to worry about them being lost or not getting to your appointment. When you do go in to see a doctor, write a list of questions beforehand that you want answered and don't be afraid to ask hard questions. Bring a friend or family member with you and ask them to make sure that your questions get answered. Doctors tend to shy away from treating people badly when they have a witness. And most of all, find a therapist or support group for people with chronic illness. It is a life changing experience that you deserve help and support dealing with. Good luck, I hope you find your answer soon.
posted by BloodSpell at 12:48 AM on June 16, 2015 [3 favorites]


Have you had your thyroid levels checked?
posted by amy27 at 1:13 AM on June 16, 2015


Glad that you took Vitamin D, but you want to get your levels retested. It can take a long, long time for Vitamin D to get back up to normal levels.
posted by Ms. Moonlight at 4:07 AM on June 16, 2015


For OTC vitamin D, if you have been deficient, you will need at least 2,000 iu per day, and a multivitamin often only had a tenth of that. Get tested again so you can get the 50,000iu prescription.
posted by Elysum at 5:01 AM on June 16, 2015


Yeah, seconding being re-tested for Vit D levels, esp. if you're not taking a maintenance dose. It wouldn't explain everything but it might explain some things, if that makes sense. How high were the "high" doses? If they were ~2K IU/day, they may just have been too low to make a dent -- I've had friends who were low enough that they needed the 50K IU/day for a week to get results.

And as noted above, taking a vitamin/multivitamin doesn't mean your body can actually use that. How are you supplementing iron? Can you change it up and see if it helps?

I also thought of lupus, given the face rash. If the rheum didn't run any bloodwork -- that's problematic. How long ago did you see the rheum? Can you get back on the waiting list for a different rheum so you're at least in line? (Not instead of the opthamologist, neurologist, family doctor, etc., but in addition. If that's possible.)
posted by pie ninja at 5:23 AM on June 16, 2015


There is also a condition called pernicious anemia, where you can't absorb B12. So no matter how much you take orally, if your gut can't absorb it, you need shots or the nasal spray. I think you're right on track with that and the PPI.

Other causes are folate deficiency and Vitamin C deficiency.

If you can't absorb B12, you may need shots. I guess, if you haven't already, ask for a full B12 and folate assay, plus D, to rule it out. My Mom had B12 deficiency and she was on prescription strength folic acid plus B12 shots for quite a while (several months?). I remember having to pick up the B12 at the pharmacy before dr's appointments so they could give her the injection during her visit.

I would stress the PPI, the family history, etc. And consider that you might need shots or a combo of folic acid and B12 shots, if it comes back positive.
posted by Marie Mon Dieu at 6:39 AM on June 16, 2015


Rheumatologist said, "I doesn't look like you have any autoimmune diseases."

Was that based on lab work? Or was it one of the dismissive responses you mention?

I agree you should stay the course and keep your spot on any/all waiting list/s. In the meantime, request medical records from every doctor you've seen. If you don't already have the films from December's MRI, put in a request to get those. If you get pushback, press harder.

It's infuriating that doctors are being dismissive. Showing up with documentation from other doctors might send a message that you Respect doctors. Also infuriating is that just saying you had an MRI that showed lesions doesn't cut it... a new doctor might assume that if a past doctor did nothing about that, it must not have been a big deal. So let them see for themselves. (Or at least ask them to, and they might be eager to find something another doctor didn't.)

Vitamin D was my first thought too. A deficiency can wreak havoc. But I have a Vit D prescription sitting on my counter unused, because it's a once-a-week D2. D3 can be converted up to 500 times faster (sorry for no citation--googling the difference is pretty eye opening). Look for the liquid form of D3 plus K2. That way you can use the drops under your tongue in case digestive absorption is an issue. As others have said, it can take a long while to get those levels up, but if it's a long time before you can be seen again, you may as well see which, if any, of your symptoms go away in that time.

I'm so sorry you're dealing with this. The anxiety that comes with waiting for answers certainly doesn't help!
posted by whoiam at 6:40 AM on June 16, 2015


Vitamin D - Yes, I had a deficiency (have?), took high doses for a month, no change in symptoms. Will restart with the OTC supplements just in case.

FWIW, it took 6+ months of taking vitamin D supplements before I started feeling better.
posted by Jacqueline at 8:54 AM on June 16, 2015


A book-club acquaintance has Primary Lateral Sclerosis (PLS) and many of her symptoms are the same as yours. She noted that the PLS was incredibly challenging for her doctors to diagnose, and she was mis-diagnosed with MS first.
posted by Ardea alba at 8:56 AM on June 16, 2015 [1 favorite]


I'm less qualified than anyone else here, but did the blood tests include checking levels of lead? Some of your symptoms seem to match those caused by lead poisoning.
posted by TristanPK at 11:04 AM on June 16, 2015


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