Laura, darling, I could hug you! I could have written almost your entire post! And our little group just may have stumbled onto something important. Maybe VERY important.

First, let me outline what I see as the core experience, because it comes in a half-dozen variations. The distinguishing characteristic shared by all the forms is that extreme loss of muscle tone. Those of you who have not experienced it yet will have a hard time imagining it. The closest thing to it is the way my arms used to feel after a day of working with a chain saw had vibrated my arms to jelly. That is what differentiates it from standard PD. From there the different forms add their own details.

Of the things mentioned, I relate to these:
"...although freezing still comes into play, what we are experiencing is far different. "

"...I am so "relaxed" that I can barely stand or walk."

"...this is what I am like for a good 2 hours. Sinemet does not seem to touch it; ..."

"...at the peak of these episodes, I weirdly have a sudden, urgent need to (sorry about this TMI) void the bladder, etc. That seems to be the turning point, if I a take a second dose of Sinemet, my body will slowly start to respond. Quite honestly, it 's like Frankenstein's monster on the table as he begins to sense he has limbs. """

"...I sense a profound absence of all muscle tone or contraction-..."

"...meds do no touch it. I sometimes have had to add in a 1/2 tablet of 25 m benadryl, but I noticed more it is a matter of timing. Just lying there doesn't seem to help me. I have to get up and gently stretch plus try to walk around as best I can. Eventually, it feels like my muscles wake up, rub their eyes, and all of sudden I am totally back to normal. Sometimes, it seems like my lower limbs and upper limbs compete to see who gets to relax longer. Others, I get to point where muscles start to come to life and then I sink back. It is all so disturbing and bizarre..."

All of that could have been written by me. There are a few others who have this experience. Bandido 1 has hinted that he does. Tom Isaacs, whom some of you know as the head of England's Cure Parkinson's Trust and I talked yesterday and confirmed that he has it. I have had it for at least five years and maybe ten. Laura indicated that she has had it for two months. Now we know that it can develop where it did not exist before.

I trace my recent worsening of it directly to the wall of stress that fell on me over the last six months. Twice I have found myself lying in the floor unable to so much as raise an arm and once I found myself in a chair and just as weak.

At least I was until my wife brought me two potassium tablets that had me back on my feet in minutes and this mystery first began to yield up some clues for me.

This is going to take some typing so, rather than chance losing it at a critical point I am going to post it "periodically". :D

We are looking at something new that we should not be seeing and which could be very important.

Debi, please pay attention. I know that I kid around a lot but I'm dead serious on this and someone needs to put it in front of the right people.

We are looking at some type of what is known as a "periodic paralysis." The first one was discovered in 1984, so this is still the frontier. There are a half-dozen or so types known. With one exception they are genetic. Usually they are extremely rare, show up before the age of 20, affect Oriental men, or otherwise should not even affect one, single person on this forum! And yet we have roughly a half-dozen!

There are two possible explanations and both are exciting. One is that we all have the variety that is not genetic but, instead, results from thyroid problems. Statistically, there should not even be one of us in a group this size. And this would mean that the place of the endocrine system needs to be looked at in depth and post-haste.

The second is that PWP can develop a hitherto unknown disease of this type either as part of the disease or as a side effect of medication. That latter possibility needs an even faster look since it could yield dramatic QOL improvement at almost zero cost.

These are what are known as channelopathies or ion channel disorders. They are being researched but without any particular importance. That needs to change.

Before I go on, let me emphasize one thing- If this is indeed what we are seeing THERE ARE EFFECTIVE TREATMENTS ALREADY ON THE SHELF!! That is, those of us who are already dealing with this as well as those who are destined to deal with it have aid available right now that may do more for QOL than sinemet or anything else! Again, it depends on the nature of what is leaving me confined to a chair for eight or so hours per day right now, but the odds are high that something dramatic could come from this.

Now, I am going to paste in some resources for everyone to think over. But do remember, this is new territory and we may even be looking at a new "species" so don't rule anything out until we get looked at.

http://www.translational-medicine.com/content/6/1/18

This is an article by Dr. Jacob Levitt of Mt. Sinai Hospital and discusses one type of periodic paralysis (PP) which he happens to have himself. Some quotes:

"The time from premonitory symptoms to full blown attack is often very short, on the order of minutes. For that reason, a sufficient dose of potassium to prevent and relieve an attack should be kept in various places at all times, including: at the bedside, in a pocket of coat, in the car, in the pocketbook, and in the suitcase. Potassium should be kept on the person at all times.

One helpful exercise, especially for those individuals experiencing a high frequency of attacks, is to make a diary of attacks. They should document whenever they get an attack, paying attention to what they ate within the 24 to 36 hours preceding an attack, what activities they did within the preceding 24–36 hours prior to the attack, and what medications they took or forgot to take. As some triggers are completely individual, they are only identified by careful attention to the details surrounding the attacks. Once triggers are identified, the patient should avoid them. Sometimes one can relate a series of attacks over consecutive days to one large triggering event."

" Numerous triggers have been reported to induce attacks of paralysis. The most consistent are rest after exercise and high carbohydrate meals. A high carbohydrate meal causes a spike of endogenous insulin release, resulting in a potassium shift from outside to inside myocytes. The potassium shift triggers inappropriate activity of mutated voltage-gated ion channels, resulting in membrane depolarization, and manifesting as paralysis.

Sodium intake triggers some, but not all, patients. It is important for salt-sensitive patients to discover the amount of salt that induces attacks for them. This amount varies from person to person, and indeed, from day to day. Patients must be aware of the amount of salt in the foods they eat, preferably prior to eating them. For those patients that like to salt their food, potassium chloride (available as NoSalt®), rather than sodium chloride, can be used.

The remaining list of triggers vary for individual patients, but patients and doctors should be aware of what types of things to look out for: cold, upper respiratory infections (both viral and bacterial), fever, lack of sleep/fatigue, Chinese food – with or without monosodium glutamate (presumably a trigger because of high starch content), alcohol, dehydration, startle, any medications – some with a physiological explanation (insulin, beta-agonists, corticosteroids [9]) and many without (determined by trial and error), menstrual cycle, change in humidity or barometric pressure, and change in daily activity patterns (i.e., going from regular exercise one week to being sedentary the next week and vice versa)."

I would add the wearing off of PD medication to the triggers for me.

--------------------

This is a backgrounder on the non-genetic type
http://www.med.ucla.edu/modules/wfse...?articleid=287

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http://www.hkpp.org/faq/hyperkalemic...paralysis.html
A site for PP with technical sections for docs.



I will post more later. The basic picture is that the patient has a unusual sensitivity to a wide range of potential triggers (fragility?). If activated the body reacts by moving electrolytes such as potassium out of the blood and into the cells the same way it moves glucose in response to insulin. With the electrolyte balance disrupted the muscles of arm and leg go limp until the ions trickle back. That can be a couple of hours or more.

Summer reading list...
 

Rick,

A big hug to you for being fearless enough to post these kinds of personal details; most shy away from that. I know that since there are a few of us sharing here, there are many others out there who go through this too. I am beginning to think we do all need to start reporting the weird stuff to our doctors anyway...maybe when we figure out what is really going on, they'll think back and say "maybe we should have listened a bit more."

A few more potentially significant things to add...

- Thinking back, I believe this was slightly more gradual. I remember reading your experiences before and about the potassium levels. I was having milder, not as lengthy attacks earlier, so there was a more gradual change, and it only seemed to hit at night when I was winding down for the evening. As my stress at work has heightened, so have the attacks.

-Prior to this troubling loss of muscle tone...it is the opposite of "fight or flight" Wikipedia describes it as "rest and digest", at night, I would have an off period, not very long, marked by more noticeable rigidity and stiffness- this was unusual for me as I usually just have a tremor, a little slowness, and a lean.

-Now it seems these episodes might happen more unpredictably which really concerns me. I had it start to happen toward the end of my day...I will say that adrenaline kicked in and nipped it in the bud as I was determined not to freak out my students.

-I note it can happen in the AM in a milder way in that meds resist kicking in and muscles don't come to life. Usually my mornings were noted for too much muscle tone in form of dystonic foot. I am also vulnerable in late morning and late afternoon.

So we have Colonel Mustard with the lead pipe in the Conservatory...

really, it is only potassium? I just tested with normal levels, so I wouldn't think I needed a supplement...

does it correlate with diurnal Cortisol levels?

You presented with a tremor as well? Is it the right side? I am still mainly hemispheric, or right side impact only? I wonder if this experience correlates with a subtype?

Do we all share a common med like use of an anti-depressant?

Do you think this a special type of PD?

Oh, and I totally relate to the squirmies as our muscle reconnect; it is oddly a feeling of release or relief and lasts for seconds. At times it doesn't happen at all.

I can sometime avoid an attack if I keep active...clean the house be

Food can actually break the attack; especially if protein-centric!

Well, I just finished teaching for the school year, and I daresay in adding these articles I have the most unique summer reading list around ;) I will put all this together and discuss with my neuro next week. Has your doctor chimed in on this at all?

-Laura

Laura-
First, let me reiterate that it is not limited to potassium and in some cases potassium would be exactly the wrong thing to take. Could even be fstsl.

Second, I have a brand new neuro. Saw him for the first time two weeks ago and due for followup in two more. I ratsed this issue and he was going to do his homework and I mine. That is one reason that I was glad to know that it wasn't just me.

Hi Rick,
I too recognise this pattern of 'paralysis' which I have related to as part of the wearing off process, that increases withe each successive daily dose, with the strongest effect in the evening. In other words, that is when I am feeling the weird relaxation the most. Also can confirm the bladder pattern is part of this. Have also found it a strange phenomenon as it is the diametric opposite of rigidity, and actually sometimes follows a patch of extreme rigidty in which my muscles visibly bunch. This is not something my neuro would even get close to discussing!!

I followed through your Periodic Paralysis topic with a little research on the net, hopping from one thing to another, the other day, and in a strangely synchronistic way arrived at GABA, unfortunately can't remember how I got there, but it was related to a condition in which PP can be a feature (PD mem strikes again). Why I say strange is because not that many days before I did the NT questionaire and very surprisingly came up as being a GABA type, and this NT has not really come up on my horizon before..... I expected of course that I would be a dopamine type.....could this be part of the imbalance we have all been interested in finding out about...

I have been hovering around thinking of this sequence of symptoms as being part of the progression of 'medicated PD' or symptomatic of NT imbalance, so am interested in other hypotheses, and was fascinated to read Laura's concise and clear description. I do not think that the bladder aspect is TMI at all, it seems to me a very significant indicator that something is happening, something measurable.

This is a classic example of a discussion that only PwP could have, we are again in uncharted territory - no I will amend that to newly charted, because we are all describing the same thing, it is only the cause that is as yet hypothetical.

Thanks for all you do to keep us on our mental toes,

Lindy

PS Please all readers heed Rick's warning on meddling with potassium levels, it is something for the experts and even they can sometimes get it wrong. A very close friend, in hospital for something completely unrelated, died when a junior medic decided that this was what was needed.

This is a "typical" that I was working on for my doc with some comments added:

“A typical episode will last from one to four hours. It comes on in a time period of fifteen minutes or so from the first hint to incapacitation. From there it is a slow climb back to an on state over the remainder of the period.

The first signs are a loss of fluidity in my movement. This quickly (say five minutes) progresses to freezing where each step is a struggle and exhausting. At times I have been forced to lie in the floor and wait it out. At others I have been forced to crawl in public to a safer location. Falling is a real risk.

Subjectively, cognition slows and I feel like I am at the back of a cave seeing the daylight some distance away. Brain fog. Physically, even typing is near impossible. My legs feel as though there is no life force in them and often my arms do too. Conversation is almost physically painful.

While the wearing off of meds seems to be a trigger, taking them once it has begun has no effect. Even triple dosing is useless once the cascade starts. However, taking them well before it begins seems to head it off.

At about a third of the way through, I sense a shift, usually in the form of transient energy waves in my legs. Very fleeting at first, they become more pronounced as the second third of the process passes. Toward that endpoint, hesitant stretching helps.


Then the fun begins. Still unable to walk, I have to urinate. I mean REALLY have to urinate. I struggle to the bathroom sometimes, use a urinal others, and occasionally have an accident. Then I relax for five minutes and repeat the whole process. Three to six times is typical. The urine is copious and almost clear.

Each trip is a little easier and the brain fog dissipates. Finally at the end, intense stretching speeds the turnabout. Extra meds taken earlier now appear and take effect.

This has gone on for ten years and has increased in frequency and intensity but not in nature. It is not unusual for me to have three such episodes on a given day.”



I've been thinking about what might serve as a flag to indicate that this should be suspected. So far, I suggest:
1- A familiar worsening of symptoms including gait problems that does not respond to meds but resolves with time.
2- A weakness of the muscles of the legs and arms when at rest and rigidity when forced to respond (i.e. by walking).
3- A predictable pattern in time (i.e. every day around lunch) or circumstance (i.e. sudden stress).
4- Sensitivity to blood sugar fluctuations.
5- Polyuria.
6. Sensitivity to declining levels of PD medications that is not countered by additional medication.

http://www.ncbi.nlm.nih.gov/sites/en...m_uid=13239022

It seems that an over active thyroid could be causal.

Am I onto something here...
 

My particular "brand" of this led me straight away to research the parasympathetic nervous system because I noticed at first more a regular, pronounced relaxation of muscles involved in voiding - my peak involves either bladder or bowel (ick- graphic but may be relevant). After this, if I "listened" to my muscles, I could return my system to a state of relative harmony.

I told my dear brilliant cousin, who also happens to be a nurse, and immediately she asked me if I had been checked for Myasthenia Gravis, er, well no, but in what I have learned I wonder if we are in uncharted territory of a new sort of movement disorder. This could all be crazy, over simplistic leaps but let's keep an open mind....

Myasthenia Gravis manifests as extreme muscular weakness. It as autoimmune disorder that results when our T-cells develop antibodies for our...drumroll for Paula...acetylcholine receptors. The T-cells either destroy or block the receptors.

Sound vaguely familiar? There is a newish theory that PD happens to be autoimmune as well. Furthermore...

Symptoms...unstable or waddling gait, weakness in arms, hands, fingers, legs, neck, a change in facial expression, dysphagia (difficulty in swallowing), shortness of breath and dysarthria (impaired speech, often nasal due to weakness of the velar muscles).

The severity of weakness fluctuates during the day, usually being least severe in the morning and worse as the day progresses, especially after prolonged use of affected muscles.


Key difference...we have absence of tone- not induced by use.


Factors that worsen myasthenic symptoms are emotional upset, systemic illness (especially viral respiratory infections), hypothyroidism or hyperthyroidism, pregnancy, the menstrual cycle, drugs affecting neuromuscular transmission, and increases in body temperature.

Of particular interest to me is the mention of estrogen- I have noted that pregnancy often results in worsening of PD - same thing with MG.

Patients with anti-MuSK-antibody positive MG may have focal or regional weakness and muscle atrophy that are more suggestive of motor neuron or muscle membrane (myopathy) disease.

Interesting to that neurology has noted links between PD and MG. With people having one disorder then developing the other. How about seeing them both essentially as one disorder with people experiencing varying degrees of impact on various neurotransmitters?

So all this leaves me wondering have we either seriously f***ed up our other neurotransmitter receptors OR are the two together somehow one other option in a spectrum disorder?

What I find interesting in all this is that I think it is highly indicative that we also have an autoimmune disorder that maybe attacks more than just dopamine uptake?

Common treatments for MG include steroids, antibiotics, anti-inflammatories...hmm, haven't we been lamenting how PWP might also benefit from these same treatments?

I am going to stop here because it is mere speculation and most likely has been researched. I keep losing my posts these days, so will leave this for further commentary or not. I just want to stress that I think what we are experiencing is more than dopamine dysregulation.

Please note: all italicized portions are directly from the Myasthenia Gravis Foundation site.

PLM lists 2400 people claiming stiffness as a major symptom and only 49 claiming weak legs.