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Sudden left side numbness, negative for stroke

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hi friends. I’m a three year cancer survivor trying to navigate life after my cancer and the death of my sister from ovarian cancer. Long story short I was driving my kids when I experienced left lip numbness, left thumb numbness then my entire left leg went numb. Like pins and needles. And it felt swollen but wasn’t. Spent a day and half in the hospital where every test was run and lots of bloodwork. Nothing definitive found. Cholesterol is slightly high and BP is never great but not crazy high. I’m 5.6 and half and about 160 lbs which is heavy for me. Always was about 145. I try and eat a plant forward diet. I work at a nature preschool, enjoy gardening and generally active. I exercise when I can but find working and being a mom and doing my hobbies doesn’t leave me with much time or energy.
They’ve released me on b12 (slightly low), baby aspirin and plavex (I think) with follow ups scheduled. I’m stumped to what caused this. But since cancer I feel like my health is out of my control. I try my best to live healthy, do therapy. All of the things. I’m 48. I want to live another 40 years.
they did ct scan, head and neck mri, eeg, echocardiography with bubbles. X Ray. Lots of bloodwork. I was terrified the whole time it meant my cancer was back.
Lyme test pending. They discussed mini stroke as a full stroke was ruled out. Considered Migraines but besides numbness no other neuro symptoms. Then viral but I haven’t been sick with any symptoms.

I don’t know where to go from here. Calling my PCP Monday. Very curious to talk to my oncologist as well though I don’t see him till the fall. But the experience was terrifying. I had my kids plus one of their friends in the car. I had to drive us to the hospital. I wonder if any of you have any insight or similar experience. Please help me understand this? Forgot to add. Numbness was intermittent for about 5 hours then resolved. I did have some hypersensitivity in my left lower lip which was where the numbness began. Other than that i feel normal. I am hyper aware right now of every sensation and I’m trying to be mindful of the present moment and not let my fears run away

Comments

  • waves2stars
    waves2stars Member Posts: 141
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    There could be a few different causes, but unless you are having ongoing symptoms it may be hard to tease out what caused this event. You might ask your primary care for a referral to a neurologist because autoimmune issues, viruses, and spinal cord problems could cause the same symptoms. It often takes a very long time to get seen by a neurologist, but your oncologist may be able to get you quicker access.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
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    this is helpful thank you. Yes I’m supposed to follow up with neurology in 4-6 weeks. I’m going to call Monday. The symptoms were so sudden and severe. I hate the thought of them happening again.

  • maggie15
    maggie15 Member Posts: 1,081
    edited June 30
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    Hi @monarchandthemilkweed , I'm sorry that you had that frightening incident. If you are not symptomatic it can be very difficult to figure out the cause. I ended up in the ER with a concussion when I apparently briefly passed out and fell while out walking; no reason found. It happened again at home a month later with no evident cause. The third time it happened was during a routine pulmonary function test when I was hooked up to monitors. I was coughing severely and my O2 level dropped to 40% on the monitor and then went back up to 89%. The tech grabbed me as I passed out. Cough syncope was finally the diagnosis (had never heard of it) and my steroid inhaler dose was doubled to prevent rather than reduce the frequency of my coughing episodes.

    A consult with a neurologist is a good idea in the event there is something they can find. It seems that you were given an excellent workup in the ER and are on meds to prevent B12 deficiency and mini strokes which are possible causes. I understand your worry as I was afraid to drive. Hopefully that numbness won't appear again.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
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    maggie15, thank you so much for sharing your experience. It is slightly uncomfortable being a medical mystery at the moment. Since coming home from the hospital, I’ve had a few times where I felt tingling but it never was severe like before and it only lasted minutes not hours.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
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    so I’ve seen my PCP. She’s ordered a nerve functioning test and the autoimmune panel of bloodwork. So some more tests and waiting. Still very occasionally have tingling.

    Wonder how common autoimmune disorders are after cancer

  • maggie15
    maggie15 Member Posts: 1,081
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    There seems to be an association between autoimmune disease and cancer but no agreement on which appears first. I seem to grow cells which aren't cancer but shouldn't be there (e.g. a thyroid goiter which has surgically been removed twice and keeps growing back, nodules, dysplasia in various organs.) I haven't been diagnosed with a specific autoimmune disease but have Reynaud's and am a super responder to steroids. My new MO (previous one moved on) took a look at my medical record and said I must have some unknown gene for uncontrolled cell growth or a tendency toward being autoimmune. Nobody wants a diagnosis for those conditions but it would be welcome if it were the root cause of the tingling. I hope you get your tests and results quickly.

  • waves2stars
    waves2stars Member Posts: 141
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    I think stress and surgeries can trigger some, like myasthenia gravis, so it’s good to get a full panel. I had a similar episode to yours last year, but with lingering weakness, that my onc suspected was autoimmune in origin, though only my rheumatoid factor was elevated. I got no answers but am happy it’s nearly resolved a year later. Hopefully all that info your Dr is getting will get you an answer!

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
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    so interesting Waves2stars! Thanks for sharing your experience.

  • maggie15
    maggie15 Member Posts: 1,081
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    Just happened across this article today. I have to supplement for my low B12 levels (per my gastroenterologist) but don't have any definite identifiable autoimmune disease so I thought it was interesting.

    https://www.medscape.com/viewarticle/form-b12-deficiency-affecting-central-nervous-system-may-be-2024a1000c5q?ecd=WNL_trdalrt_pos1_240702_etid6642193&uac=413329CR&impID=6642193

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
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    Maggie that’s very interesting. Something happened with a good friend of mine. Her iron levels in her blood were normal-ish but her iron stores were critically low which explained the sudden and strange symptoms like anxiety, shortness of breath going up the stairs, weakness.

    Bodies are so complex and living post cancer makes it even more challenging. I’m feeling better with almost no symptoms (tingling and numbness) and I think my moods are stabilizing.

    this was a really traumatic experience for me. Especially because I had my kids with me and drove myself to the ER. It was so sudden. I wish I were better at rolling with the punches life has thrown but I’ve been knocked down SO many different ways these last few years it’s hard not think it’s the worst. I’m begging life to give us a break. Hopefully.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
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    so my ANA test came back abnormal and my PCP is recommending I see a rheumatologist because she is not sure if my symptoms are related and what the abnormal result means. So more waiting.

  • maggie15
    maggie15 Member Posts: 1,081
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    Nobody likes to get an abnormal test result but if it leads you closer to a diagnosis that’s a good thing. Keep us updated (but we won’t hold our breath.)

  • waves2stars
    waves2stars Member Posts: 141
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    Another diagnosis isn’t great, but to get answers is a relief! Hopefully it helps allay fears of lepto or cancer in the cns. Did you get the nerve conduction test?

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
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    nerve conduction isn’t until the mid Aug. I did get into a rheumatologist in a couple weeks. Yes waves2stars, after the shock of all geez this could be another diagnosis I ultimately did feel better about it explaining my symptoms in a way other than cancer


    And I’m reminding myself that I am generally very healthy besides this weird occasional tingling