6 months of unexplained twitches throughout body, high WBC

Posted by berber19 @berber19, Oct 9 1:27am

Hi all,
Am a 37 yo female healthy and work in healthcare.

6 months ago I woke up to heart palpitations. After a week of this, and then feeling “off” during one day, decided to go to urgent care. My ekg was way off and they sent me to ER. Initially they found nothing expect abnormal ekg, then I came back 4 hours later with worsening palpitations and my potassium was way low.

Cardiologist tests all normal.

After all this scare I stated having body twitches, initially with palpitations was like whole body was twitching, then turned to just little here and there but has been every day since then. At night one arm or both will go to sleep. Palpitations have resolved but these symptoms remain. Has kept me from sleeping well. Symptoms get worse around my period.

MRI today came back with normal results. Neurologist expected it would, but glad to have confirmation.

From the initial er visit my WBC was elevated around 12. And has hovered around there at each check up since. My pcp now suggesting hematology referral. Have been losing some more hair than normal past month or so too. But no pain and energy is generally ok.

Sound familiar to anyone.

Been so many guesses, post-Covid? Unknown cancer? Auto-immune? Allergy? Etc etc.

Working in healthcare sometimes has its disadvantages because you imagine yourself in every scenario you have seen. But my health anxiety is getting better with mindfulness.

Thanks

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@berber19

PCP did do an A1C at few months ago and was normal. When I asked again this last visit to see an endocrinologist about why glucose is still high she said probably cause I ate before I came…I don’t think she even looked that it’s been high at every blood work and also why would it be out of range, even if I just ate that doesn’t seem normal.

Post covid has always been my suspicion…just seems so crazy and so few answers. Is this what you and doctors have been leaning towards for you?

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Everyone’s blood sugar goes up some after they eat, but not that much. I routinely check out glucose numbers when I review lab results for family members and theirs have never been high. I would definitely explore it. A blood meter is one way to know how it’s going. Good your A1c is normal.

My ENT diagnosed me with post covid syndrome mainly due to my smell/taste disorder. I failed a standardized smell test miserably. I also had little taste for almost a year. They have returned though. I do still have a constant bitter taste.

My neurologist says I may have that, but he believes my numbness in feet and tingling in arms and hands is due to B12 deficiency. Of course, it could be diabetes or spinal….it has yet to be determined. I haven’t ruled anything out. I take my B12 and I did scent retraining for a while. Overall, I’m better. I’m prepared for some things to be permanent unfortunately.

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Berber19, it seems covid often causes weird neurological issues afterward, and autonomic dysfunction could cause some of your symptoms. If no occult infection is found to explain the high WBC and neutrophils, I would suggest you take a look at the possibility of Cushings disease, excess cortisol production from the adrenal glands. It is rather rare but could explain the high white counts, high glucose and even low potassium, and hair loss. It’s like being on Prednisone, but from an internal source-overactive adrenal glands. This can be tested by an 8:00 am serum cortisol level, a simple blood test. Also, it’s normal for glucose to be high for 2 hrs after eating, so glucose measurements should be done fasting or after 2 hrs from eating. I hope your dr will check a cortisol level.

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Do you have any low grade fevers? It’s important to actually check For fever with a thermometer as you can have a low-grade fever and not realize it. Fever is an important sign that helps distinguish inflammation and infection from other conditions.

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@windyshores

@berber19 have you considered getting a blood glucose meter, or even urine strips(but meter is much better). It could help you at least pin the blood sugar issue down.

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I had not thought about that but think it’s a good idea. MD is really set on not being concerned about it, just that I don’t have diabetes, which ya, but maybe some other reason for all that?

Thank you for suggestion

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@slkanowitz

Do you have any low grade fevers? It’s important to actually check For fever with a thermometer as you can have a low-grade fever and not realize it. Fever is an important sign that helps distinguish inflammation and infection from other conditions.

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I just checked and temp was 99, but it hasn’t been that. At Md office is normal. My dtr was sick last week, may be fighting off a similar thing now?

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@slkanowitz

Berber19, it seems covid often causes weird neurological issues afterward, and autonomic dysfunction could cause some of your symptoms. If no occult infection is found to explain the high WBC and neutrophils, I would suggest you take a look at the possibility of Cushings disease, excess cortisol production from the adrenal glands. It is rather rare but could explain the high white counts, high glucose and even low potassium, and hair loss. It’s like being on Prednisone, but from an internal source-overactive adrenal glands. This can be tested by an 8:00 am serum cortisol level, a simple blood test. Also, it’s normal for glucose to be high for 2 hrs after eating, so glucose measurements should be done fasting or after 2 hrs from eating. I hope your dr will check a cortisol level.

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Thank you!! I will check this out. PCP did do a 24 hr urine test which I think was a check on cortisol and was normal.

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@celia16

Everyone’s blood sugar goes up some after they eat, but not that much. I routinely check out glucose numbers when I review lab results for family members and theirs have never been high. I would definitely explore it. A blood meter is one way to know how it’s going. Good your A1c is normal.

My ENT diagnosed me with post covid syndrome mainly due to my smell/taste disorder. I failed a standardized smell test miserably. I also had little taste for almost a year. They have returned though. I do still have a constant bitter taste.

My neurologist says I may have that, but he believes my numbness in feet and tingling in arms and hands is due to B12 deficiency. Of course, it could be diabetes or spinal….it has yet to be determined. I haven’t ruled anything out. I take my B12 and I did scent retraining for a while. Overall, I’m better. I’m prepared for some things to be permanent unfortunately.

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Thank you for your follow up. Covid seems to be doing interesting things all around. Have heard of similar unexplained palpitations going on in many young people too.

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@berber19

Also of note, I have constant tingling in lips annd weird feeling in mouth annd with swallowing. Recently ENT noted inflammation and excess mucus build up but everything else looked good. Have had extra saliva build up regularly. This also wakes me or bothers me during the day. He suggested allergy testing.

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Have you met with a migraine specialist, movement specialist or neurorehabilitation doctor?

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@katcollins

Have you met with a migraine specialist, movement specialist or neurorehabilitation doctor?

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No, only a neurologist and ENT so far in specialists. Takes forever to get any referral and then actually see them unfortunately.

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@berber19

No, only a neurologist and ENT so far in specialists. Takes forever to get any referral and then actually see them unfortunately.

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I have no idea what your cause is, but I’ll just share what happened with me.

Last year, I saw my first neurologist. Could you discuss a trial medication with your PC of a med to calm down the nerves? After my first neurologist, the tests were normal, but I had experienced extreme body wide fasciculations that could not be explained. He prescribed me one bottle of Clonazepam (small dose) to take as needed. No refills, as this med isn’t usually recommended long term. I try to avoid any medication that isn’t mandatory, so I was very judicious in my use of the med. I found it helped me relax and stopped the twitching. So, while I can’t be certain of the cause of my twitching, it responds to me relaxing. After that, the fasciculations left and now only return occasionally. They are random and intermittent. I now am able to tolerate them better and they leave on their own without medication. Oh, I also attend talk therapy and that helps.

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