My face is numb, and a bunch of doctors don't know why
April 9, 2015 10:54 AM   Subscribe

Hoping someone can help me with my medical mystery, or at least give me some talking points for my neurologist visit this week.

tl;dr: numb face, palpitations, numb foot, tremor, tinnitus, dry eyes, night sweats, memory issues. No diagnosis, nothing showing up on blood work.

40s female / overweight but not obese / white / US

Taking Wellbutrin, Topamax daily. Relpax and Norco as needed for migraines (hormonal). I stopped taking multivitamins and B-complex in mid-March when I thought maybe I might have B-6 toxicity. I still take fish oil and vitamin D. I am currently tapering off the Topamax in case that's causing problems. No meds were new in the months before symptoms started. History of Raynaud’s, migraines, kidney stones, and recently, endometriosis.

Here’s the deal: in mid-September 2014, I noticed that my face was numb on the right side. Additionally, around June/July, I started having problems with severe dry eyes. I can’t wear contacts anymore. That makes me sad.

Over the last 6 months my face has become pretty much completely numb. I have some small amount of feeling in my nose and lips, but it seems to be fading, too. I also have a numb spot that seems to be developing in the toes on my left foot.

I also have been having heart palpitations that occasionally make me feel dizzy. I’ve had these before and done a 24 hour Holter, and they never picked anything up.

I noticed that my hands shake when I’m trying to do something that requires hand strength + fine motor control. Lighting a stick lighter. Picking up a full teacup. It’s worse after I've physically exerted myself.

In the last few weeks, I've been having memory issues. I can't remember words that I should be able to remember. And I can't even remember the words that describe the word I'm stuck on. It's like my mind goes blank.

Other annoyances lately - major tinnitus, mild night sweats (comes and goes). Ongoing issue with feeling like I swallow the wrong way and choke, especially with liquids or spicy foods (probably a year or more).

There seems to be no physical reason for what’s going on, at least that I can tell. I have dealt with anxiety in the past, especially panic attacks (postpartum thing). I know what they feel like, and this ain’t it. The numbness has not let up at all during this time. If it’s in my head, it’s some new form of thing. (The neurologist gently suggested psychosomatic issues last fall. I don’t have a problem with that diagnosis, I just want to be sure that’s what it is.)

I did have several bouts of diverticulitis in 2012-2013 requiring me to take Cipro-type antibiotics something like 5 times. I’ve seen something about delayed-onset Cipro side effects, but most of those websites seem a little woo.

March 2015 I had a recurrent attack of diverticulitis - however, I had my sigmoid colon removed for this in Feb 2013. My surgeon is perplexed.

Doctors say:
The rheumatologist has no idea what’s going on. He said there’s probably some auto-immune thing going on, given Raynaud’s and my slight ANA result (as well as father’s Raynaud’s and mother’s probable lupus). Doesn’t have any diagnosis, offered Undifferentiated Connective Tissue Disease as a possibility.
The neurologist is also perplexed. I’m seeing her again this week.
The surgeon is perplexed that I would develop non-sigmoid diverticulitis.
The hematologist is very pleased with my MGUS progress, or lack thereof (condition discovered during the bevy of blood tests for the numb face).
The psychiatrist says I sure have something weird going on, but he doesn't know what it is.

Tests run (there are more than this, let me know if you need other results) -

MRI on brain (twice): unremarkable
Spinal tap: unremarkable
Serum electrophoresis: normal except **monoclonal gammopathy found**
CBC: Normal values other than **MCH slightly elevated**
B12: normal
Metabolic panel: normal except for **low GFR**, which the neuro said was famously inaccurate
Hemoglobin A1C: normal
ANA: **Positive; 1:80 speckled**
TSH: Normal
Anti-SmRNP, SSA, JO, dsDNA, SSB, Smith: Normal
Lyme antibody: negative
ACE: normal
HIV 1/2 ABS and P24AG: negative
Lupus anticoagulant: negative
Beta-2 Glycoprotein IgG/IgM: normal
Hepatitis B/C: negative
Early Sjogren’s profile: negative
Syphillis: negative
Anticardiolipin IgA/IgG/IgM: normal
Rheumatoid factor: normal
Immunoglobulin M measurement: **low**
Immunoglobulin A measurement: **low (this has happened over 5 months- was normal)**
Immunoglobulin G measurement: normal
in a 24 hour urine test, my Kappa/lambda ratio was **high, creatinine slightly high**
Followup on the monoclonal gammopathy 5 months later - no proteins found (yay!)
posted by anonymous to Health & Fitness (13 answers total) 4 users marked this as a favorite
FWIW I had terrible hand tremors on Wellbutrin and terrible memory/cognitive/recall issues on Topamax.

The heart palpitations sound like anxiety to me (and I've had a lot of your other symptoms due to anxiety, including the hand tremors and swallowing/choking thing). But have you looked into whether your other symptoms could be side effects from one or more of your medications?
posted by amro at 11:08 AM on April 9, 2015

Tapering off the Topamax is a good idea.

When I was on it, my face, palms, and the balls of my feet would go numb all the time. It was so disconcerting.
I had memory-related side effects up the wazoo.

If you didn't have these symptoms prior to the Topamax, I bet Topamax is the culprit. It fucked me up something good.

I continued to have memory issues for a while after I stopped taking the Topamax, FYI, and still rarely my palms will go numb. I had none of those symptoms prior to taking it.
posted by phunniemee at 11:24 AM on April 9, 2015

Experiencing numbness and/or tingling (parathesia) in the face, hands, feet is very common with topamax. I'm kind of surprised that your doctors aren't aware of this. Tapering sounds like a really good idea. Like phunniemee, I'd bet good money on Topamax being at least part of the problem.
posted by skye.dancer at 11:28 AM on April 9, 2015

Also, topamax can cause/exacerbate night sweats/hot flashes and Raynauds. (Ask me how I know. ::sigh::) And it's colloquially known as "dope-a-max" for its brain-fog side effects, so that should tell you something, too.
posted by skye.dancer at 11:32 AM on April 9, 2015

Nthing having had numb hands/feet on Topamax. (I'm glad to know it's not just me...)
posted by fast ein Maedchen at 11:35 AM on April 9, 2015

IANAD but it sounds like whichever doc told you to taper the topamax might be on the right track. I checked uptodate through my institution's subscription and pretty much every symptom you mention is listed as a possible adverse side effect (though the incidence was only around ~1% for most of them).

Numbness, hypertension, tremors, tinnitus, dry eyes, and memory issues were all listed.
posted by Wretch729 at 11:49 AM on April 9, 2015

Long shot, but the face numbness does come up in the possible "other symptom" list. (Primary symptom list.)

And a lot of the other symptoms you mention are on the list of possibilities. The tinnitus is really common with IH.

Did they check the opening pressure when they did the spinal tap? (I'm not sure, but I seem to remember something being said about that not being something they do unless that's something they're looking for... it's been ten years, so I might not be remembering accurately.)

I actually had a relatively short path to diagnosis (for some, it takes years) - got lucky and my eye doctor noticed papilledema, which was followed by a confirmation of what he was seeing by two other eye docs in the practice and eventual referral to a neuro-ophthalmologist. That was followed by an insane amount of testing to rule out absolutely positively everything else they could think of that could be causing it - the only thing actually wrong was high opening pressure on the spinal tap.
posted by stormyteal at 11:52 AM on April 9, 2015

I'm not a medical doctor, but a friend of mine has Lyme disease, and several of your symptoms sound very similar. She had several negative tests before she came up positive.
posted by umwhat at 11:59 AM on April 9, 2015

It might be worth trying to pursue the Sjogrens angle more deeply. Sjogrens can cause some odd neurological symptoms, which might account for the numbness and tremors (here's a relevant blog post; that blog has lots more info about many of the lesser recognized aspects of Sjogrens, and links to lots of good resources). The Raynauds, difficulty swallowing, and GI issues could also fit that picture. Having a negative test for the Sjogrens antibodies doesn't necessarily rule out a diagnosis. Have you also had any of the other diagnostic tests used for Sjogrens (listed here)?
posted by Corvid at 11:59 AM on April 9, 2015 [1 favorite]

Given how thorough you are, you're probably already planning this but: Print off the above post and give it to the doc. It should be quicker and more thorough than trying to repeat it.
posted by Mr.Know-it-some at 12:18 PM on April 9, 2015

Not the first to say it wrt to Topamax, but the same statement could be made of your supplement and pharma intake generally: when in doubt, cut it out. Your supplements can go very easily, and speaking from my toxicology platform any substance (supplement, pharmaceutical, whatever it may be) that can be eliminated should be eliminated. Drop the fish oil (it's a weird mix, hard to standardize,m under scrutiny, etc.), but keep the vitamin D if you feel the need to retain some of your routine.

That said, neuropathies can be tricky to diagnose. Has your neurologist performed any nerve conduction tests? That's a pretty essential piece of the puzzle that I don't see mentioned.

As with all things related to pain, numbness, and difficulty in diagnosis, you'd do yourself a favor to seek psychiatric counseling (I dealt with a prolonged period of numbness after a TIA a decade ago and my psychiatrist helped me through the worst of the unknowns).
posted by late afternoon dreaming hotel at 12:25 PM on April 9, 2015

Given that you have kidney stones, you are more likely to have a B-6 deficiency than toxicity: Does Too Much of the B Vitamins Affect Your Kidneys? I mention that because B vitamins are also important to neurological health, so that could contribute to your problems with things like numbness.

Cipro can cause "ringing in the ears" (aka tinnitus), it is contra-indicated if you have a history of certain heart problems, I have been looking up info related to it because this rings a bell for me and it suggests magnesium deficiency.

Causes and management of drug-induced long QT syndrome Indicates that magnesium deficiency is associated with long QT syndrome. This is a heart condition that can be deadly. The abbreviation TdP in the paper refers to Torsades de pointes

Magnesium Depletion Drug Side Effects Can be a Deadly Problem This article talks about quinolones depleting magnesium and says:
Drugs like the Quinolone Antibiotics are inactivated by magnesium, despite the fact that they effectively BIND the magnesium in your body, leading to magnesium deficiency by a process called Magnesium Chelation.

According to Wikipedia: "The majority of quinolones in clinical use belong to the subset fluoroquinolones" Fluoroquinolones include Cipro.

16 Signs You’re Magnesium Deficient – Symptoms of Low Magnesium Levels
•Poor heart health
•Difficulty swallowing
•Poor memory
Magnesium Deficiency Symptoms in Women: Magnesium helps transmit messages between the nerves. If you don't get enough magnesium, you may experience nerve-related problems such as diminished nerve function. This can cause unusual sensations, including numbness or tingling.
This University of Maryland page on Magnesium has a list of studies referenced at the bottom. It indicates magnesium may prevent migraines for some people, can protect against hearing loss, can protect your heart health. I think it's a good read.

My best understanding is that magnesium deficiency is hard to diagnosis. Calcium in the bones is used to mediate the blood chemistry. Calcium and magnesium work hand in hand. If you are deficient in one, you are practically guaranteed to be deficient in the other. The body works really hard to keep your blood pH within a very narrow range. So blood tests are not a good indicator of certain deficiencies because the body will strip the bones of minerals in order to mediate the blood. If the blood pH leaves that narrow range, you die and it happens fairly rapidly. (If you are diagnosed with a certain form of acidosis associated with diabetes, they hospitalize you because if it isn't promptly reversed, you can be dead within three days.)

There may be more going on than just a magnesium deficiency. In fact, I suspect there is -- if nothing else, magnesium deficiency promotes calcium and potassium deficiencies. Those all impact heart health and probably nerve health as well. I will suggest the Cipro likely initiated this and then it was never really treated and other drugs you are on or dietary changes or just life kept it going.
posted by Michele in California at 2:11 PM on April 9, 2015

I take Wellbutrin, a whole bunch of other medications too, and have diabetes. Twice during the last 36 months I've had a period of extreme numbness in my extremities accompanied by occasional numbness in my lips and an unusual amount of small muscular spasms, particularly severe facial tics, which went on for at least a couple of weeks.

It was definitely terrifying - I thought it might be diabetic neuropathy and that it might be permanent, but on both occasions it went away.

The most recent case of this was at the beginning of the year and I talked over it with my doctor. He confirmed that it wasn't diabetic neuropathy because that wouldn't go away, and ran through a list of things that might cause numbness.

One he mentioned was electrolyte imbalance, and that made sense because I'd doubled the length of time I spent exercising a couple of weeks before the numbness started, and it being winter here I was all bundled up for going outside and hence sweat much more while working out than during other seasons.

Then he ran through the list of nutrients that count as electrolytes and came to magnesium: I also ran out of both the magnesium supplement I'd been taking and my multivitamins around the same time and had been lackadaisical about re-stocking on them.

tl;dr So my doctor and I tentatively attributed the numbness to a deficiency of magnesium and possibly other electrolytes, along the lines of what Michele in California mentions. I got hold of some magnesium and multivitamins and resumed taking them, scaled back my workouts, and so far the numbness and tics haven't returned.
posted by XMLicious at 3:28 PM on April 9, 2015

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