1. < Brain & Nervous System

Whole body electric shock pain attacks multiple times a day

Posted by megana2017 @megana2017, Mar 21 6:11pm

Looking for some help/ideas. I have Lupoid Sclerosis with small white matter lesions not typical for MS and positive LP with 12 bands. I have a new very scary symptom and my neurologist is not sure what's going on. No new lesions on mri. While laying down a whole body electric shock that is completely all encompassing rushes through my body from my head moving down to my feet in a millisecond and makes me shout in pain and shock. It's like lhermitte's sign but it's not isolated along the spine or back, it's my whole body. Last night I had this over and over again until around 3am. I was trying to sleep and every 15 minutes this would occur, I'm not moving, I'm not getting up, just laying in bed trying to sleep. It's terrifying because it feels like actual current, I can feel it in my teeth even and I woke up my husband several times because half the time it feels like my heart stops and I cry out in pain. Directly after I'm clammy and sweaty and dizzy. Today I have a headache on my left side and keep having waves of vertigo and am really out of it.

Thank you to anyone with ideas!

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dlydailyhope | @dlydailyhope | Mar 22 7:45am

@megana2017
Have you had a recent MRI of your brain and full spine? Do you have the white lesions throughout your spine? Does anything else show up in your spine compressing spinal cord or nerve roots?

Has your neurologist considered whether this is a form of epilepsy/seizure? Have you had extensive neurological bloodwork and EMG/nerve conduction studies of upper/lower limbs?

Have you had your hormones checked and do you have any deficiencies or toxicities in your bloodwork?

REPLY
1 reply
megana2017 | @megana2017 | Mar 22 4:44pm
In reply to @dlydailyhope "@megana2017 Have you had a recent MRI of your brain and full spine? Do you have..." + (show)
@dlydailyhope

@megana2017
Have you had a recent MRI of your brain and full spine? Do you have the white lesions throughout your spine? Does anything else show up in your spine compressing spinal cord or nerve roots?

Has your neurologist considered whether this is a form of epilepsy/seizure? Have you had extensive neurological bloodwork and EMG/nerve conduction studies of upper/lower limbs?

Have you had your hormones checked and do you have any deficiencies or toxicities in your bloodwork?

Jump to this post

Oh my gosh thank you so much for responding! I'm pretty scared.
I've had some of those, MRIs and blood work.
Brain MRI: Impression
Mild small vessel ischemic changes. No evidence for hemorrhage or acute territorial infarction. Scattered white matter disease. The distribution of these white matter lesions are not in the typical pattern for multiple sclerosis.
Cervical MRI: no T2 abnormalities.
C5-C6: There is broad disc bulge with effacement of ventral subarachnoid space. There is right foraminal narrowing without spinal stenosis.

C6-C7: There is right paracentral disc bulge eccentric to the right. No spinal canal compromise or foraminal narrowing is noted.

Blood work:
NMO negative
DsDNA < 10
C3 and C4 compliment normal
CRP high
CBC:
Hematocrit, MCV, MCH all high (I also have homozygous hemochromatosis)
MCHC is low

I'm guessing the EMG/nerve conduction studies of upper/lower limbs is probably high priority?

REPLY
2 replies
dlydailyhope | @dlydailyhope | Mar 22 6:25pm
In reply to @megana2017 "Oh my gosh thank you so much for responding! I'm pretty scared. I've had some of..." + (show)
@megana2017

Oh my gosh thank you so much for responding! I'm pretty scared.
I've had some of those, MRIs and blood work.
Brain MRI: Impression
Mild small vessel ischemic changes. No evidence for hemorrhage or acute territorial infarction. Scattered white matter disease. The distribution of these white matter lesions are not in the typical pattern for multiple sclerosis.
Cervical MRI: no T2 abnormalities.
C5-C6: There is broad disc bulge with effacement of ventral subarachnoid space. There is right foraminal narrowing without spinal stenosis.

C6-C7: There is right paracentral disc bulge eccentric to the right. No spinal canal compromise or foraminal narrowing is noted.

Blood work:
NMO negative
DsDNA < 10
C3 and C4 compliment normal
CRP high
CBC:
Hematocrit, MCV, MCH all high (I also have homozygous hemochromatosis)
MCHC is low

I'm guessing the EMG/nerve conduction studies of upper/lower limbs is probably high priority?

Jump to this post

@megana2017
Have you also been working with a rheumatologist to check your bloodwork for antibodies/autoantibodies since lupoid sclerosis is like a blend of MS and lupus?

Are you working with a cardiologist on heart/circulation and small vessels in your brain which is tied to your scattered white matter disease?

Your high CRP shows inflammation in your body. Your high hemocrit should be investigated further due to ties to heart/lung. High MCV or MCH could be a vitamin deficiency/anemia and something tied to your blood/oxygen levels. Low MCHC is also tied to anemia. Have you worked with a hematologist to monitor your blood/iron levels?

1.
https://repositorio.ufba.br/bitstream/ri/15976/1/00124743-200704000-00009.pdf
2.
https://my.clevelandclinic.org/health/diseases/22927-microvascular-ischemic-disease
3. https://my.clevelandclinic.org/health/diseases/23018-white-matter-disease
4. https://betterhealthwhileaging.net/cerebral-small-vessel-disease/
5.
https://ashpublications.org/blood/article/139/20/3018/477138/Hemochromatosis-classification-update-and

REPLY
dlydailyhope | @dlydailyhope | Mar 22 6:44pm
In reply to @megana2017 "Oh my gosh thank you so much for responding! I'm pretty scared. I've had some of..." + (show)
@megana2017

Oh my gosh thank you so much for responding! I'm pretty scared.
I've had some of those, MRIs and blood work.
Brain MRI: Impression
Mild small vessel ischemic changes. No evidence for hemorrhage or acute territorial infarction. Scattered white matter disease. The distribution of these white matter lesions are not in the typical pattern for multiple sclerosis.
Cervical MRI: no T2 abnormalities.
C5-C6: There is broad disc bulge with effacement of ventral subarachnoid space. There is right foraminal narrowing without spinal stenosis.

C6-C7: There is right paracentral disc bulge eccentric to the right. No spinal canal compromise or foraminal narrowing is noted.

Blood work:
NMO negative
DsDNA < 10
C3 and C4 compliment normal
CRP high
CBC:
Hematocrit, MCV, MCH all high (I also have homozygous hemochromatosis)
MCHC is low

I'm guessing the EMG/nerve conduction studies of upper/lower limbs is probably high priority?

Jump to this post

@megana2017
I also was reading about your cervical MRI. You may want to see an orthopedic spine specialist to consider ACDF surgery on your cervical c5-c6 disc bulge. It seems to be pressing on and displacing your spinal fluid which may be compressing you cerebral blood vessels that supply oxygen to your brain. I have had ACDF surgery on my c5-c6 levels due to disc bulge and bone spurs pressing on my spinal cord. I need to get a 2nd surgery on my c6-c7 levels due to a new herniated disc that is compressing my spinal cord (causes many symptoms below my neck, including arms/hand control and strength plus bladder control issues).

REPLY
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