I feel it in my fingers, I feel it in my toes
December 13, 2018 8:32 AM   Subscribe

YANMD, and MDs have no idea why I’ve had periodic numbness and tingling in various body parts for months. Wanna brainstorm? Medical details below.

I’m a basically healthy woman in my 30s. I have periodic numbness and tingling in my hands, arms, feet, legs, face, lips, and tongue. It’s been going on for months. The sensations aren’t severe, just annoying and occasionally distracting. I can’t detect a pattern in what goes slightly numb when, or why. Some days are worse than others; some days I barely notice it. Right now the right side of my tongue is numb?? as are both my feet, slightly.

I’ve seen a few internists, a neurologist, and most recently a rheumatologist.

Things I Have Tested Negative For

B12 deficiency
MS (via brain and cervical spine MRI)
ALS etc. (via EMG)
Celiac disease
Thyroid issues

Medical Stuff I Do Have

Low iron (have been supplementing for months)
Migraine (often vestibular; generally few and far between)
Low-ish B12 (back to normal after supplementing at the beginning of all this)
Vaguely elevated ANA levels (via family history but nothing named or diagnosed)
I take a very low dose of an SSRI and a normal dose of Wellbutrin; these have been steady and useful for the past five years or so.

I know it’s unlikely we can solve this mystery when M actual Ds cannot, but never hurts to come to MeFi, right? Also, any words of encouragement to make me feel less like the crazy young female patient making shit up would be super welcome. Again, YANMD.
posted by fast ein Maedchen to Health & Fitness (20 answers total) 3 users marked this as a favorite
Response by poster: Worth adding: hypothetically there’s nothing keeping me from living with these symptoms indefinitely (as suggested by one doctor), but I’d really rather not.
posted by fast ein Maedchen at 8:34 AM on December 13, 2018

What do you do for migraines? I used to get weird stuff like this happening when I took Topamax for migraine prevention, but seems like you are not taking a preventative.
posted by Tandem Affinity at 8:37 AM on December 13, 2018

Response by poster: Topamax, interestingly, made the soles of my feet numb basically immediately. I haven’t taken a preventative since.
posted by fast ein Maedchen at 8:38 AM on December 13, 2018

My mom had similar symptoms that turned out to be a Potassium deficiency, solved by potassium supplements. Is that possible?
posted by brainmouse at 8:48 AM on December 13, 2018 [2 favorites]

While I know that women are often told that it's all in their heads, a question: Are you ever able to generate your own symptoms? I ask because I spent about 18 months with foot numbness and tingling plus whole body twitches during a time when I was very anxious. I started out with a few stress twitches, started focusing on them and soon had, for instance, visible twitching in the small muscles of my hands and visible twitches on my legs. (I too was tested for ALS.) I also had tingling in my feet that came and went with no particular logic.

I have a history of giving myself symptoms, sometimes when I'm consciously anxious and sometimes when I'm not aware that I'm under stress. They're real symptoms that really exist independent of my subjective perception. If you have any history of somatizing your feelings, that could be the cause.

I was able to wind down the twitching through conscious work on my anxiety and a job change (since the job was about 75% of the stress). The symptoms disappeared over the course of about six months and although they occasionally show up again, they've been mostly gone for over ten years now.
posted by Frowner at 8:48 AM on December 13, 2018 [2 favorites]

Any idea about your calcium and vitamin D levels? If you vitamin d is low and your calcium is high it could be that overactive parathyroid glands are to blame; the two measurements inversely correlate due to how the hormone works. Numb toes, fingers and lips are common symptoms. For future readers, if you’re a woman in your mid-50s, that’s when it tends to hit, but I see that you’re in your 30s. Memail if you want more details; after going through a long diagnostic process myself, I’m a bit of an evangelist about this matter.
posted by carmicha at 9:23 AM on December 13, 2018 [2 favorites]

Have you ruled out diabetes? It's often acquired around the time one turns 40, but you could be a little ahead of the game. You do not have to be overweight to get it, even though that's a major cause.
posted by ubiquity at 9:27 AM on December 13, 2018 [6 favorites]

You appear to describe a peripheral sensory neuropathy. It is generalized and involves cranial and spinal nerves. The main question: Is it progressive? That is, is it getting more severe, longer lasting attacks, more frequent, or involving new areas?

There are multiple causes (see briel Mayo Clinic discussion). Discuss it with your internist. Certain environmental toxin (heavy metals) can be tested, eliminate any meds or supplements not prescribed for a diagnosed medical condition ( and regard those suspiciously, as well), avoid alcohol, and you can get thiamine, niacin, and pyridoxine levels done or consider a B supplement contains those vitamins.

As a GI, I always look at iron deficiency with alarm, even in a female during her menstrual years. Stool testing for occult blood is reasonable.
posted by sudogeek at 9:27 AM on December 13, 2018 [3 favorites]

I had this from a B12 deficiency, even with B12 injections. Gabapentin definitely helped -- worth asking your neurologist if they'd consider giving a try. Best of luck, I know how truly unnerving this can be (no pun intended).
posted by argonauta at 9:45 AM on December 13, 2018 [1 favorite]

Mostly seconding Sudogeek here but also, I'd probe a bit more into the "no b12 deficiency but low b12" a bit.

And I too see a lot of docs shrugging off iron deficiency in young menstruating women but yeah, I'd do some more probing here as well.
posted by M. at 9:49 AM on December 13, 2018 [1 favorite]

It's the Topamax. I had the peripheral neuropathy that went away with potassium supplementation. Ask your neuro.
posted by heathrowga at 11:12 AM on December 13, 2018

Any chance you might be going through early menopause or perimenopause? After I had a hysterectomy, my feet & other body parts seemed to fall asleep a lot faster; I don't remember the full explanation I found online, but my brain just retained the "this is fairly common in menopause" bit. Maybe worth getting your hormones checked if your doctor's open to it?
posted by diffuse at 11:15 AM on December 13, 2018 [1 favorite]

Came in to recommend potassium, and possibly magnesium and calcium. I get minerals from nuts and dried fruit, mainly by baking muffins with walnuts and apricots (also whole wheat, bran, pumpkin) Adding a handful of nuts and dried fruit most days is not difficult unless you're allergic.
posted by theora55 at 11:46 AM on December 13, 2018

How long do these attacks last when they come on?

There is a syndrome of transitory migratory paresthesias called Wartenberg's sensory neuritis which is super rare, but I would expect the EMG/NCS to be abnormal. (OP, they did do nerve conductions, right? Where they zap various nerves and watch how they communicate with the muscles?) Sorry for the jargony link, but the Wikipedia article is less than useless.

The fact that topamax made your feet numb makes me think this is an electrolyte issue, especially calcium or sodium (these are what TPM directly works on), or possibly magnesium or CO2. Has anyone run a comprehensive metabolic panel? Calcium? Mag? Phos? Parathyroid as carmicha suggests is a good thought. If these are all normal, have your doctor check for voltage-gated calcium or potassium channel antibodies.
posted by basalganglia at 1:11 PM on December 13, 2018 [1 favorite]

Tingling and numbness, particularly in those locations, have always been part of seizure activity for me. I was diagnosed with temporal lobe epilepsy 20-some years ago, and seizure meds have cut way down on those experiences.
posted by worldswalker at 1:14 PM on December 13, 2018

I had some degree of neuropathy from a magnesium deficiency, which was probably brought on by taking a PPI for a long time.
posted by Andrhia at 1:37 PM on December 13, 2018

I have neuropathy from a pinched nerve that usually manifests as tingling, numbness, or pain in my left arm, but recently has been causing similar sensations in my left thigh. Last night it felt like my leg had fallen asleep - while I was standing up! - and then it suddenly felt like I had used Icy Hot.

When my symptoms get bad I take gabapentin, which blocks the nerve receptors. It tends to work really well.

You had a spinal MRI to check for MS, and I did that too, but it turned out I needed a 2nd MRI in my neck/head to find the problem. It wasn't visible on the back MRI. To confirm the diagnosis, they also did tests on the speed of nerve responses that were really strange, but fascinating.
posted by tacodave at 5:00 PM on December 13, 2018 [1 favorite]

For what it's worth, I was on Topamax for about 18 months and had very similar symptoms to yours for well over 2 years after I'd stopped taking it. Topamax can also trigger Raynaud's phenomenon, which can linger or be permanent. The doctors don't tell you this, but that drug can have a very long lasting impact on your body.
posted by skye.dancer at 6:33 PM on December 13, 2018

Response by poster: I was on the Topamax for a weekend total, I think - that’s how much it unnerved (!) me. Should have mentioned, I got a blood panel and comprehensive metabolic panel that were both normal except for iron. Potassium and calcium were normal.

Some good avenues to pursue here, though. Thanks everyone!
posted by fast ein Maedchen at 12:14 PM on December 14, 2018

After a hospitalization and gallbladder surgery in 2014, I began having these same symptoms too. I took many of the same test, and these days we're just calling it ideopathic peripheral neuropathy. My symptoms have mostly gone away with low doses of Lyrica and Cymbalta.
posted by QuakerMel at 8:34 AM on December 15, 2018

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