6 Myoclonic seizures / tremors

I've been diagnosed with myclonic seizures as a symptom. I'm posting this for info or to help others.

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[ElaineCA58]

The long process of diagnosis has taken me to a PHYSIATRIST ( a rehab Dr) who has sent me to a Neuro (something) NOT a Neurologist. I had an EMG and nerve conduction testing.

A nerve conduction study (NCS) is a test that measures the speed and strength of electrical activity in a nerve. The test can gather information about the structure and function of both muscle and nerve.

Nerve conduction studies are often done along with electromyography (EMG).

[ElaineCA58]

@ElaineCA58 - PART TWO

the tests show that I have muscle damage. This Neuro ( I think it's Neuropathologist) ...thinks I have a spinal condition. I am going for a lower spine CAT scan. Which would be treatable! Imagine!!

These are all tests that all of you with movement or muscle pain should ask for.

I was refused by my GP and dismissed as a patient. At least now I have been validated. I'll try to remember to post CAT results.

As you should have MRIs of brain and spine EVERY year. Elaine

[ElaineCA58]

DRS I HAVE SEEN before a possible dx.

Neurologist (s) plural (MRIs of brain and upper spine were normal)

Rheumatologist (I had elevated blood work in relation to muscles)

Endocrinologist (dxed with hyperparathyroidism) low Vit D.

Physiatrist (rehab Dr) (sent me onto the next specialist)

and now Neuropathologist (if I have the name correct)

Where I had the EMG and NCS , blood work and CAT...which have so far shown muscle damage...indicating a spinal condition.

DON'T GIVE UP!!

[ElaineCA58]

The seizure meds had so many more side effects than just making the movements worse. Such as hair loss, excessive fatigue, dizziness. A person should not be on those meds if they do not have seizures. TRY to get the Drs to acknowledge that they should not have put me on those meds. That will never happen!

I have been released from physio therapy as they do not know how to manage these episodes. A Catch 22. Physio helps, but exertion brings on the movements. For now, I'm on my own.

[ElaineCA58]

I refer to mine as "episodes", "movements" or as what the are "Paroxysmal dystonia". Depends on who I'm talking to and what they'll understand.

It's a hard condition to explain to those who don't have it. And also because mine might be caused, by another (as of yet) undxed condition (might be nerve damage), it confuses people.

[ColonelMarksman]

You look a lot like me, which is somewhat comforting to know. Is it confined to just your arms? I've had a condition since I was 16, but all seizers were brief. When I started working in a restaurant, they got worse over time, lasting for 5 hrs and 20 mins once. My arms, legs, and neck all jerk and flail though, sometimes repetitive, and sometimes flowing through my whole body. Imagine doing nothing but that for 5 hours. When it lessens I look as shown in the video.

[ElaineCA58]

I feel for you. Only a person who suffers such conditions can ever realize the effect is has on your life. Are yours seizures? I have a movement disorder. I am conscious all the time and am aware of what's going on. It's worse with fatigue and exertion. The only time it went beyond my arms was when I was wrongly put on seizure meds. I had side effects. Now with no seizure meds, it's mostly my right arm. I go to physio therapy which helps some. But physical activity makes it worse. Catch 22.

[jackdal39]

do they hurt

[jasonsinlove]

@ElaineCA58 I looks to me like PLMS(Periodic limb movment sydrome) commonly called (restless leg syndrome) It can be very torturious!

[MarFish101]

DEE D DEE DEE DOH DOH DEEE.

[hayyalife]

THanks sooo much for sharing this. I have had a similar undiagnosed condition as well as full body convulsions. I don't even know what kind of doctor to go to anymore because I can't stand the smirking and harshness when they can't figure it out. I can still hear the paramedic saying "it's not legit" running through my head. The last thing I would ever do was flop around in the middle of the street in front of my neighbors for attention!

Peace and Love

[bunney4]

Thank you so much for posting this! I truly feel for you as I have had these same symptoms for a year and a half now but mine involve my whole body. It's so hard to explain to people that you have no control over your movements.

And I too was put on anti-seizure medication and my symptoms became worse. Didn't realize the meds could be the culprit of my worsening condition until now. Thanks for the info!!