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I’m New to the Group!

Hi, everyone! I was diagnosed with POTS in August after having myoclonus and a lot of other issues . I was getting better - and then I caught COVID in December (on my birthday, no less). Ever since I’ve had a significant increase in the myoclonus and fatigue. What are your experiences with symptoms increasing after a mild COVID case?

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Hey, everyone! I have POTS but I also experience myoclonus and dystonia-like movements. They are much worse in the evening. The two neurologists I have seen have both suggested FND but the treatment is not working and I don’t have mental health problems. All of my symptoms improved with POTS treatment but relapsed after having COVID. Has anyone here experienced anything similar? Sorry for the length.

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Newly Diagnosed

I have tics and myoclonus jerks daily, they are a part of my new diagnosis of FND (functional neurological disorder) and go hand in hand with my non-epileptic seizures. My FND also triggers strong auditory and visual sensory overload, such as crowds, waiting rooms, church, restaurants, etc. My tics are often in my arms, hands, shoulders and neck.

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Three years of medicine #CPTSD #Healing #Myoclonus

It’s been three years, and I’m still accepting that I need medicine to function. I remember when I didn’t need it. Before this, I was unaware of the gift of good health. Still, I am grateful that I have great insurance and medicine! Don’t know how I’d be without it!


I was just diagnosed with #epilepsy two days ago. I also have #Antiphospholipid Syndrome.

I have seen that quite a few people in my #APS support group have problems with #myoclonus, so I did a little checking; and found that it is not uncommon for people with APS to have the same #iscemic brain lesions and #white matter changes that I have.

Actually, people with APS haver a 10 times greater risk of having epilepsy than does the general population.

Anybody here have APS and Epilepsy?

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Sudden jerking movements (myoclonus, ballismus)

I’ve been having some problems with involuntary movements for about a year or so now. Not the normal shaking that you get from Parkinson’s. I have more than my fair share of experience of Parkinson’s.
So, these movements seem to eminate from my very core and rack my body. It’s like a massive twitch..... that just comes from nowhere. More often than not when I’m laying down.

Do you suffer from this? Is this something to do with medications? Do you know anything about these sort of movements.

It’s a long shot but I thought I’d ask anyway. After this coronavirus stuff abates and our healthcare system becomes more able to cope, I’ll seek a more medical advisement.

Thank you



Undiagnosed Autonomic Problems

Hi. I had an attack of Transverse Myelitis fourteen years ago in 2007. Thankfully, I have had a great deal of recovery with only slight disability remaining. A year and a half ago I had a meal at a restaurant with a friend. About half an hour later I passed out. My blood pressure went extremely low. I was taken to the hospital by ambulance. I was released a few days later with no diagnosis. Then, last September (2020), I had a second episode of Postprandial Syncope. I had eaten a veggie burger and some tempura green beans, so not a huge meal. I was subsequently hospitalized. A Cardiac Tilt Table Test showed abnormal autonomic function. My cardiologist said it was due to my heart having difficulty pumping blood back to my upper body due to my Transverse Myelitis lesion at T5-7. MRIs done at that time show my old TM lesion as well as two brain lesions that are enlarging, one in my right Inferior Frontal Lobe and one in my left Pons. My MRIs show a history of smallStrokes. They also show increasing white matter. These were compared to MRIs done fourteen years ago when I had my TM attack. I recently wore a Holter monitor, and it shows that my heart function is good.

My Neurodegerative Deseases doctor told me I don't have Multiple Sclerosis. I had a genetic test for hereditary Transthyretin Retinol Amyloidosis (hATTR). Thankfully, it was negative. A week ago I had two hours of Autonomic Testing including a Neurological Tilt Table Test. I also recently had two Biopsies on one of my legs that will be analyzed with a Red Stain Test. I haven't gotten back results for either of these.

Besides the Postprandial Syncope, and bouts of serious frequent Diarrhea, I also have an increasing problem with Myoclonus. It occurs frequently when I am ill of tired. I do not loose consciousness during these seizures. This has been going on for years, but is now getting much worse.

Besides Transverse Myelitis, in 2007 I was diagnosed with Antiphospholipid Syndrome. In 1991 had Thyroid Cancer with Follicular Adenoma and Papillary carcinoma. I have post surgical Hypoparathyroidism from that surgery. In 1984 I had a hysterectomy due to a ruptured Uterus with Adenomyosis. About a year and a half after that, I had an Oophorectory because of rupturing blood filled growths on my ovaries. I also have well controlled Adult Onset Asthma.

I'm listing all this old medical history because who knows, maybe it bears some relationship to my current Autonomic problems.

My question is, does anyone have anything resembling my weird cluster of symptoms, especially the digestive problems and myoclonus? Please let me know if you do. I feel very alone in this journey and would appreciate any suggestions on what to pursue with my Neurodegerative Specialist.

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Recent Neurological Attack

In the beginning of September I was out of state when I had an attack that caused me to need to seek medical attention. I had eaten a meal, veggie burger and tempura green beans, so not a super large meal. I stood up and passed out. In fact, I passed out four times before I really woke up. My speech was slurred. My friends had me lie down on couch, where I started having pretty violent myoclonus in my neck, weird rippling muscle contractions in my legs and spasming of my arms. Since I was out of state, my insurance would cover ER visit, but not hospitalization! Next day I still felt worn out and had diarrhea, but things got better as the day wore on.

I called the nurse line for my insurance. They suggested stroke and told me not to drive, but get home ASAP and seek medical treatment. A friend drove me home (two day drive). I went to the ER and was admitted to hospital.

For background: Almost 14 years ago I had an attack of Transverse Myelitis in which I became partially paralyzed and experienced a great deal of pain. Thankfully, I did have a substantial recovery. I also have Antiphospholipid Syndrome. MRIs from that time showed a TM lesion at T5 with damage at T5-7, two small lesions on my left Pons and two small lesions on my right Inferior Frontal Lobe.

Three and a half years prior to my recent experience I had a similar attack after a meal out with a friend. That one landed me in an ambulance ride to a hospital. They said my blood pressure was dangerously low. At the hospital they did a CT scan, but they did no MRIs; and I left hospital three days later with no diagnosis.

Well, during my recent hospital stay, they did MRIs and compared them to the ones taken almost 14 years ago. The four lesions on my brain have enlarged and I have an increase of white matter. They also did a Tilt Table Test which successfully provoked another episode of Syncope and subsequent Myoclonus. (They had to pad the rails of the hospital bed.) I was diagnosed with Dysautonomia.

Having Transverse Myelitis, I know that it can lead to a diagnosis of Multiple Sclerosis. I find that I have five symptoms that point to MS. The Cardiologist put me on Crestor and also Midodrine to increase my blood pressure, told me to wear 20-30 mmHg compression hose and drink electrolytes daily.

I had another episode of syncope on a very hot day few days ago while I was seated, which I hear is unusual.

Yesterday I went to a Neurologist who is not an MS specialist. He reviewed the MRI images and told me that the uptake in the brain lesions is not consistent with MS Lesions. He referred me to a "Super Specialist" who treats neurodegenerative disorders. I called their office and was told that this doctor will review my records and let me know in two days if he will see me as a patient. I know two days is not a long time, but it seems an interminable wait when I have this monster in my head. I'm scared and I want to find out what is going on and if there is any viable treatment.


Dystonia Awareness #Dystonia #Myoclonus #MovementDisorders

#dystoniaawareness #injectionoverload #sleepdeprivation #dystoniamovesme #butwaittheresmore #movementdisorder #DopaResponsiveDystonia #keepyoursenseofhumor #princessparking
I will get it all out in one post, the bad-the ugly-and the positive adjustments.
It's parkinson's ugly cousin. It's your muscles running a marathon without your permission. One day you stumble like a drunk, the next you have tremors that make you look like a junkie and some days you misplace your words. Jaw spasms=cracked teeth and migraines. Calves in a permanent state of "half of a Charlie horse". Rib spasms are the worst, except that glute spasms are the worst worst, but wait there's more!
Dystonia gives you FASCICULATIONS (tiny lightening bolt, snake under your skin, leaves you with the attention span of a flea on crack plus keep you awake all night spasms) and MYOCLONUS (jerky, I didn't mean to kick you out of bed, I'm don't need a sweater- random shivers spasms). And the gift that keeps on giving- you can have all of them at the same time which is called a "storm"⛈️
As one neurologist explained "It's not all in your head.... it's all in your brain"
40+ injections every 90 days=3-5 almost tolerable weeks in 90 days.
Now, onto some positive things....
I am so very lucky to have a supportive husband, son, family and friends. I truly appreciate those 3-5 weeks and try to enjoy the little victories. When my head tremor is active I can turn up the car radio and appear to really know how to jam. I do a great impression of a metronome and a pincushion. I may be "economy sized" but I have calves of steel. I have a cane and I am not afraid to use it. My amazing Dr's in Arizona have been able to time my Dystonia and Arthritis treatments so I only have a REALLY bad month a couple of times per year. I'm definitely not afraid of needles. I have an amazing collection of ice packs, heating pads, and pictures of my brain. The closer they come to helping Parkinson's patients the closer they come to curing Dystonia.
Dystonia moves me.

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