FINAL update on 'limb shaking' problem.perhaps essential or idiopathic myoclonus

[Carolina]

Dearest Sjogren's Angels,

My CT Scan with contrast dye showed no abnormalities of my carotid arteries, including branches above my neck.
So my limb shaking is not from temporary occlusion of the carotid artery (by head position, etc) leading to loss of oxygen to the brain, leading to Temporary Ischemic Attack, causing the limb shaking.  This is a real syndrome and must be found and corrected as it can be dangerous, even fatal.

My EEG this morning was perfectly normal.  YES!

So why do I have limb shaking, specifically my left arm and hand?

I've been doing some searching and I've come up with a possible match to:

Essential myoclonus occurs in the absence of epilepsy or other apparent abnormalities in the brain or nerves. It can occur randomly in people with no family history, but it also can appear among members of the same family, indicating that it sometimes may be an inherited disorder. Essential myoclonus tends to be stable without increasing in severity over time. In some families, there is an association of essential myoclonus, essential tremor, and even a form of dystonia, called myoclonus dystonia. Another form of essential myoclonus may be a type of epilepsy with no known cause.

http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm

Myoclonus refers to involuntary contraction of the muscles:  hiccups are a common example, and the sudden jerking just as you're falling asleep.

My younger son has had essential tremor of his left hand since his early 20's. It is quite marked, but has not progressed in severity. He is now 46.

I had three episodes yesterday of the tremor of my left hand and arm, one quite strong and two very mild ones.

So perhaps essential or idiopathic myoclonus, which is purely descriptive.

I can live with this, and am so glad horrid things have been ruled out!

Hugs,  Elaine

[Deb 27]

That's good news Elaine. I am glad you feel some peace about the test results not showing any bad abnormality.  Sometimes we get strange symptoms and the Drs. don't have a clue. Do you think it might be a vitamin or mineral deficiency of some sort?

I've had problems with vibration sensations and tremors the past 2-3 years. Again, it's off and on. At times, it seems like it's been a medication I was on but overall, I am prone to these things now.   

Good luck and keep us posted!

[irish]

That is good! I am assuming the doc told you that it is something that you will have to live with. Another something to live with----imagine that!!!

Hope  you are enduring the summer and the heat. It did cool off on Wed here and was really nice for the county fair. They had the biggest crowd in years cause usually it is raining and so humid you could die in your tracks. Felt like fall the past couple of days. Kind of scary cause it makes me think the season is screwed up and fall is coming early. Take care girl. Irish

[SJSman]

Hi Carolina,

I wrote the following text in response to your first post on this subject.  I am afraid that I did not follow each of your update-posts since then, so I might have missed the answer to my current question, which is:

How was my theory in the following text, my response to your first post, ruled out?

Suppose that your blood is sort of randomly clotting in one of your two carotid arteries.  Suppose that what you are experiencing is that one of the larger clots gets caught in one of your carotid arteries, you have these stroke-like symptoms, which in this case would actually be stroke symptoms and not stoke-like symptoms.  Suppose that the clots so far have all come loose and then your symptoms immediately vanish and the event is over.  This is why you are still alive.

Oh, I am happy to be wrong by the way - I wouldn't wish blood clots on anyone!

Your long-term perseverance and positive energy in managing your health problems, which would be daunting for anyone, is inspiring to me.  I have observed in recent years that you still manage to enjoy life in spite of it all, that being something that I struggle with.

[SJSman]

Does anyone else ever feel invisible?  Perhaps I already died from this Sjogren's, and haven't realized it yet. 

Sometimes I feel that way, both at home and here on the Forum.  It is a form of dissociative disorder brought on by severe stress I think.  Of course, being invisible isn't the only explanation for observed phenomina, there are other less pleasant explanations that I almost always choose to overlook.

[Linda196]

SJSman, the medical term for the possible scenario you described is "intermittant claudication" and is a plausible thought, except that clots tend to leave a trail......altered  Activated Clotting Time, Prothrombin Time (PT), Partial Thromboplastin Time (PTT), Prothrombin Consumption Time, Fibrinogen, Coagulation Factors, Platelet Count, Platelet Function Tests, Thrombin Time, and the  international normalized ratio (INR) some of which remain altered for an extended period of time. Additionally, the vessel walls from which a clot has detached would generally (not always of course, that would be an absolute, and there are very few absolutes in medical science) show some residual roughness or plaque.

Clot formation takes time, and the symptoms may or may not be felt as the vessel narrows. Definitive symptoms would occur when the vessel is completely blocked, and in the event of a brief attachment and subsequent detachment the symptoms would be intermittent (transient ischmic attacks or TIA), but would likely be followed by a different set of symptoms as the detached clot travels to a narrower part of the vessel and becomes re-lodged.

Neurologists use the terms like "stroke like" and "TIA" when the symptoms resolve spontaneously, caused by decreased blood flow and ischemia (not cell death); stroke (cerebrovascular accident- CVA) means the sudden death of brain cells and results in permanent impairment, although retraining and physio can provide alternate neuromuscular pathways.

[Carolina]

Dear SJSman,  You aren't invisible on this forum, or anywhere else, I imagine.   I think the scenario vis a vis my carotids wasn't clotting, but rather that my carotid artery might have had places that were narrowed due to plaque formation, and that some movement of my neck/head caused that narrow place to be temporarily closed, stopping blood flow to my brain on that side (right, since it was my left arm that was jerking).

But I didn't have significant narrowing of the carotids, even higher up in my head which wasn't scanned when I had my carotids scanned after the first incident of jerking of my left arm in 2014.

Since both the CT scan AND the EEG showed no abnormalities of my carotids or my brain activity....those have been ruled out as causes of my episodes of jerking.  I had three of them on Thursday, but none since.

I personally through my own research came up with a diagnosis of Episodic Myoclonus.  I sent my neurologist a note, on Friday night...and he will probably respond tomorrow or Tuesday.

In the meantime I am struggling with either sciatica (which I've never had before) or a hip joint problem.  It feels like a toothache in my hip that goes down into my knee.   If it is sciatica it should be self limiting by all accounts.  Anyway i'm going to see my orthopedist tomorrow and try to get a reading.  I hope my hip is fine and that I just have to 'live' with the sciatica.   I don't do pain well.

I think my basic temperament is unrealistic optimism, actually.  So I just return to that set point most of the time.  And this is why the Depression that comes from Inflammation is so upsetting to me.  It takes me so long to realize what is happening.  With Immune Disorders inflammation is the result of attacks on our organs/systems by our mixed up Immune Systems. 

I've had several episodes of FLARE in the past month, which has added to the chaos of events and tests and pain.  It leaves me wondering, of course, what my Disordered Immune System is attacking, and whether or not i will find out.

When my immune system attacked my lungs and left me with Small Airway Obstruction (i can't really take very deep breaths) I didn't know anything had happened until my Immunologist ordered a Pulmonary Function Test.  AND I thought that  I had passed with flying colors, SJSman!  Little did I know.  Other damage has been noticeable from the get go.  So I wonder what is going on. 

I also had the diagnosis of Actinic Purpura on my arms.  So now I wear 'sleeves' on my arms, so I can't scratch them at night. 

It's always something, and then it's something else.

I retired early, at 58, after Angioplasties and stents, and some surgery that ended up in abscesses and many hospitalizations and surgeries.

I wanted to spend time with my French grandchildren, which I did, and I had many good years, but then the problems escalated, and here I am, severely disabled from PN, but still finding pleasures.

You are very welcome here.  Keep posting.

Hugs, Elaine

[SjoGirl]

Great news Carolina. I've experience myclonus, particularly at night and it became quite pronounced when I was on Plaquenil (so much so that I had to stop taking Plaquenil). It's been back a bit even though I'm not on Plaquenil, but I've grown used to it. 

It is possible to take an anti seizure medication to combat the symptoms if they interfere with your ADLs (but you may not be interested in adding yet another medication to your arsenal unless absolutely necessary).

Amen.

[anita]

What does the doctor say, Elaine?

[Carolina]

So, Sjogren's Angels, here my latest update from the front.

Limb Shaking:  Anita, my neurologist asked me to send a video of an episode!  Right, I need a cameraman to follow me around hoping for an episode, which typically lasts 5 to 10 SECONDS.  Even if I carried my phone I wouldn't be able to film an episode with my right hand, since they occur in my left hand, and I'm left handed. 

Now he wants me to come in and demonstrate what happens.  I'm thinking about this since I don't think I can imitate it really accurately.  My husband has seen them, so I can take him in, too.  My entire point is, why bother now?  And I haven't had an episode since I had THREE last Thursday.

Sjogirl, I already take 3600 mg daily of a seizure medication, Gabapentin.  Go figure.  I take it for the pain, itching, burning of my Small Fiber Neuropathy.

For my Sciatica the doctor ordered an MRI of my Lumbar region.  I am so tired of tests, getting ready,driving, waiting, getting on the table or whatever is involved, get dressed again, driving home, collapsing.  Only three more tests to go: MRI, Bone Scan, and Mammogram (I thought I was exempted from the Mammogram at 74?)

At least I had the unexpected joy of  being able to buy Medicare Supplement Plan F, so there is NO cost to me for these office visits and tests.  The premium is high, but not as high for Both of us as my co-pay for IVIG before this plan.
Some things do fall in my favor!

So, another day! Yesterday I got my hair cut and colored, and I hope to get some exercise and have a manicure today.
I picked up an RX for one of my cats at Walmart yesterday and found some Maxi skirts I can wear that will cover my braces and be a bit cooler than long pants in this 94 degree weather.   I find my small pleasures where I can and I enjoy caring for myself.

Hugs, Elaine

[SJSman]

Thanks for the informative replies, Carolina and Linda.  I appreciate them.