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Felix

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Hi! First post here. Thank you for your insight in advance. I'm female, 35 years old. Please bear with me as I try to walk you through what's been happening.

For the past 18 months, I've been experiencing strange "episodes" of muscle sensations. They usually come on slowly and last for several hours at a time. They're hard to describe: The feeling in my muscles isn't tingling per se, but that of intense "activity" and/or tightness that is spread out across the entire muscle.

In 2016, I only experienced these episodes a handful of times (twice after receiving lidocaine for routine procedures and once after a bit of heatstroke). During that period, the "episodes" seemed to affect my chest and upper arms; My triceps often felt like they were being pulled from my shoulder sockets while my whole upper body felt like it was being crunched towards my knees - as if I was being forced into a ball. In January of 2017, the episodes started to hit a little bit more frequently, and my breathing always seemed to be labored. A pulmonologist ran a battery of tests, all of which came back relatively normal.

Then at the end of April, I experienced an episode that affected my legs. My quads felt like they're being yanked from my hips and I suddenly was having a lot of trouble walking, although I couldn't really get a handle on WHY. It got so bad within the course of a day, that my husband took me to the ER. The ER doctor took one look at me and ordered a spinal tap to check for something called Guillain Barre. They admitted me to the hospital, but first did a full MRI workup (brain + spine), which was all-clear. (There was a tiny lesion that was no big deal and some sort of venous anomaly with cavernous something or other - also no big deal.) The attending doc brought up something called Myasthenia Gravis, so we actually skipped the LP in the hospital to rule that out first. After getting out of the hospital, and in the absence of additional episodes, my walking seemed to improve, albeit I was now hitting almost complete muscle fatigue after even minimal activity.

Both Myasthenia antibody tests came back negative. I saw a a Neuro for a follow-up, and he also ruled out GB because I still had my deep tendon reflexes and was even a little jumpy. MS was also off the table because of my clean MRI's. Blood tests were all normal. The Neuro very tentatively floated something called Hypokalemic Periodic Paralysis and said I needed to get my Potassium levels tested when I had another episode. I've done as he's asked, and that now seems to be off the table too.

About a week and a half ago, I came down with a 24-hour stomach bug, after which the "episodes" came back with a vengeance. Since then they've been coming 3-4 times a day and haven't let up. In the past few days, I've even been awoken in the middle of the night by them. The one last night paralyzed me so quickly my husband had a hard time getting me upright and unclenched. (Usually the "paralysis" or whatever it is passes pretty quickly, even if the general sensations described above do not.)

These episodes now seem to be affecting every muscle group I've mentioned at once, as well as my forearms and very occasionally my mid-back, which is the worst because it makes me feel like my spine is being crunched. My right hand has started to curl under with my wrist becoming weak and stiff. Same with my right foot - not so much curled as just sort of lifeless. I also continue to find myself being forced into a hunched over position if I'm sitting.

When I last saw the neuro about a month ago, I was unable to steadily walk on my toes or my heels. He was a little bit concerned, but cautious. Yesterday, I tried for twenty minutes to even initiate the action of raising to my toes, and didn't have much luck. I've been in denial about what's been happening, but that was a turning point for me. To give some context, before this started, I was doing ballet 4-5 times a week and was accustomed to standing on one leg with the other leg waist level or higher for minutes at a time. I was also very accustomed to standing in releve (on my toes) for long periods of time. I was in great shape.

At the moment, I'm having trouble even describing why it's difficult to walk. I sense that it's some combination of loss of coordination (I struggle with balance and have a lot of trouble initiating movement), the pulling/tightness in my legs and right foot and maybe the weakness as well. My gait is very strange - almost as if my knees are buckling inward and my hips want to buckle with each transfer of weight. The longer distance I try to walk, the worse it gets until I can barely pick up my legs for each step.

I called the neuro to explain what was happening and he scheduled and EMG right away. He has not yet witnessed my walking troubles, so I'm not sure what his take will be when he sees me.

There are a few other symptoms that are a little freaky, but I won't bore you with them at the moment. I don't really seem to have any of this twitching that so many people come here worried about (or if I do, it's very sporadic).

I'm extremely embarrassed to be posting in a forum full of strangers, but it is what it is. I'm a natural skeptic when it comes to health stuff, but even I can't shake this concern. Thank you for listening. :)
 
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Felix

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I should probably add that things like Lyme, Lupus, Syphillis, HIV, etc. have all been ruled out.
 

Nikki J

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What did your exam show? Did they say spasticity?

It is interesting that hyperkalemic periodic paralysis was brought up. There is a normokalemic variant as well which can be incredibly difficult to diagnose I believe. I ran across someone with that. She had been given a label of functional disorder before they got it right. Her EMG was intermittently abnormal. I know she had leg weakness and some discomfort too. Hers had an underlying genetic cause although she had no clear family history

Do let us know what happens. I hope you get answers quickly!
 
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Clearwater AL

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("There are a few other symptoms that are a little freaky, but I won't bore you with them at the moment.")

That being the second paragraph above the last and of 12 previous... some of us might already be there. :)

Just an example...

("About a week and a half ago, I came down with a 24-hour stomach bug, after which the "episodes" came back with a vengeance. Since then they've been coming 3-4 times a day and haven't let up. In the past few days, I've even been awoken in the middle of the night by them. The one last night paralyzed me so quickly my husband had a hard time getting me upright and unclenched. (Usually the "paralysis" or whatever it is passes pretty quickly, even if the general sensations described above do not.")

Then...

("I should probably add that things like Lyme, Lupus, Syphillis, HIV, etc. have all been ruled out.")

Thank goodness for that! :)
 

Felix

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Haha! Oh snap, Clearwater. It's amazing how no matter how you try to stick to 3 paragraphs, it's tough. Point taken. ;)

Nikki, thanks for the info. My EMG is on Wednesday. No one has brought up Spasticity, but I've only seen the neuro in between episodes. I hadn't heard of Normokalemic PP until now, but I will look into it. My potassium levels were a little bit low when I went into the hospital, but not enough to really point to anything. Since then, I'ver tried to get tested mid-episode, but potassium has been on the low side of normal. I just assumed this meant it wasn't PP.
 

Felix

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Nikki, I did some reading up on Spasticity as I was only vaguely familiar with it because of the early MS discussions I had with my PCP, and the descriptions I've found definitely set off some red flags. It's so strange because the doctors I've been seeing have been so focused on neuromuscular stuff "downstream" that I had completely written off anything brain or spine related. I think this is because the episodes were so transient that it wasn't until very recently that they could catch this stuff in the act, so to speak.

Everything I read in the sticky note however says that symptoms are never intermittent. Do people with ALS have spasticity around the clock or can it come and go as the illness progresses?

Thanks again for the insight. I won't ask anymore questions until I've had the EMG (and even then, I hope I won't be asking anymore questions here after that). :)
 

ShiftKicker

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Spasticity is always present. It can be increased or reduced based on things like stress levels or medication, but the pathological reflexes and weird muscle responses of true spasticity do not go away. It's easily detected via clinical exam- even if the spasticity is not very strong. A simple reflex test by a skilled practitioner can detect spastic response.

The issue would be WHY there is spasticity. Just like having a cough can mean a whole bunch of things, spasticity is just a symptom of something else. MS is a big one, as is stroke, traumatic brain injuries, mitochondrial issues, brain lesion, and a few other things.

Best of luck.

~F
 

Felix

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Thank you so much for the additional information, Shiftkicker. I will report back once I have my results. :)
 

Felix

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Hi! Just circling back to give an update:

I was scheduled for my EMG yesterday afternoon, but things didn't go as I expected. The neuro did a physical exam first and canceled the test because he said I needed to see someone much higher up than him as quickly as possible - either at USC's or UCLA's neuro centers. We're waiting to hear from my insurance where I can go. He was very tight-lipped throughout, but mentioned I had drop foot on the right side, weakness, and coordination issues. He prescribed a muscle relaxant for the spasms or whatever they are (spasticity?).

He said I needed to have the EMG (and possibly other tests) done at UCLA/USC where they have much more sophisticated equipment. He mentioned if he did it then and there, it could damage my muscles enough to affect the results of the next one.

He didn't give any indication of what this might be, only that it was too complex a case for him to continue with. Neither my husband nor I asked about ALS or any other possible diagnosis, which I now regret. I was surprised he didn't suggest a consult at Cedars Sanai since I think he's affiliated with them, but I'm very unfamiliar with neuro centers in LA.

The doctor said that because of my type of insurance (HMO), it could take up to a month just to get approval to go to one of these research hospitals. He was apologetic, but said there wasn't much he could do. They said they would call to get things moving first thing tomorrow morning. My husband was extremely upset when we got home because he's seen how quickly things have deteriorated. In the past few days, I've had trouble with hoarseness, speech (which I think it might just be due spasticity) and right-hand coordination/tremors. The muscle contractions, especially around my chest are kind of unbearable. They actually had me leave the office in a wheelchair because my walking was so troubling.

Does anyone know anything about the centers at UCLA or USC, by any chance?

Am I wrong to be concerned about the month-long + wait for the EMG, etc. at this point?

Sorry for another gajillion paragraphs. ;) Thanks again for your insight. It's much appreciated.
 
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Nikki J

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I am sorry you did not get any answers and have to wait.

It sounds like you need to be a very squeaky wheel here

Is the issue out of network providers? Is this Kaiser? If it is maybe there are some people here with experience of this issue. You don't have to share but someone might be able to help

I would start calling. With my insurance I have found the insurance company phone reps very helpful. They can't authorize but they have given me good direction on how to get things done and who to call and what to ask for

Your pcp should be another advocate

And the neuro you saw yesterday should step up too. He should write something to the effect that the care you need is not available in network and the situation is urgent.

Good luck
 

Felix

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Hi Nikki,

Thank you again for such a quick and thoughtful reply. What you're saying is exactly what I needed to hear. I'm terrible at being my own advocate, which is partially how I ended up in this situation in the first place.

The problem is indeed because these higher level specialists are out of network (specifically from my medical group). Apparently the group's medical board needs to approve the doctor's request first - that can take up to 7 days - and then they have to negotiate the rate with the neuro center in question which can take weeks. I'm afraid by the time I get approved, it will take another several months to actually get an appointment.

My PCP is new to me, as I finally switched from a not-so-great doctor who dragged his feet for 6 months to even get me in to see a neuro. I'll call her first thing in the morning to update her on the situation.

It sounds like the Neuro will definitely put in an urgent request - he said they would get on the phone tomorrow morning as opposed to faxing in a request, which I know speeds up the process.

I talked to my brother, and he suggested trying to get in touch with a health care advocate just to navigate everything. Have you had any experience with those?

Thanks again for the well-wishes and wise words.
 

Dave K

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If you are trying to rule out ALS, that process can take months even if you don't have these kinds of administrative delays.

It sounds like you and your doctors are trying to speed things up appropriately. Here are some things you can do to try to speed things up even more, if necessary:

(1) Ask you doctor to document in your medical record that (a) the onset of your symptoms has been rapid and (b) you were assisted out of the office in a wheelchair. These will be important facts for anyone new who picks up your file.

(2) Ask your doctor if there is a concern that, IF this is a rapidly progressing motor disorder, you might need durable medical equipment such as a power wheelchair sooner than average for someone newly diagnosed with ALS. If this is the case, then ask the doctor to document this fact in the medical record, as well.

If these things don't get you an expedited appointment with a specialist, then you can ask for an expedited Independent Medical Review (IMR) by the California Dept. of Managed Health Care (DMHC). If you Google "DMHC IMR," it should point you to the web page for requesting an IMR. You or a helper will have to fill in all the blanks on the form. Be sure to ask for expedited review! It makes a big difference.

When describing your problem, the very first thing you write should be, "ATTENTION JENNIFER ROSARIO." (She is a DMHC attorney who is well educated about ALS, so you want any all messages to DMHC to be routed to her.)

Next, tell her (1) your doctors suspect you may have ALS but lack the required equipment and expertise and want you to be seen at a specialty clinic, (2) administrative red tape is causing an unnecessary delay, (3) the onset of your symptoms has been unusually rapid, (4) you were assisted out of the office in a wheelchair, and (5) your doctor is concerned that if you have a rapidly progressing motor disorder, you might need durable medical equipment such as a power wheelchair sooner than average for someone newly diagnosed with ALS, and that time is of the essence because it takes up to 4 months or more to get a power wheelchair, which in your case could be too late if your appointment is not expedited.

But don't write this to DMHC until your doctor has put all of these facts in your medical record. What will happen after you request an expedited IMR is the regulators will notify the HMO, and someone at the HMO will look at your file to see what's going on and decide whether to fight your request. If the HMO fights, the regulators will next see your records and try to persuade the HMO to get off the stick. For a Californian with an HMO, this is the absolute fastest way to cut through red tape: make sure the need is well documented in your medical record, and then ask DMHC for an expedited IMR.

Note: HMOs may try to steer you to use one of their in-house medical advocates. In my experience, the only job of these people is to delay things even more and to act compassionate and try to make you feel better about the delay. If you have a need for speed but a slow HMO, DMHC is the only way to go.
 

Felix

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Dave, thank you so very much for the amazing information - truly, it's incredibly helpful. My husband and I are getting a plan of action together as we speak. I think the first thing I need to do is to get clarification from the neuro as to where his head is at exactly. Maybe ALS isn't even actually a consideration at this point. Perhaps he's thinking it's something mitochondrial. All I know is that the spasticity is really starting to hurt my joints. I've been in a crushing bout of it since 2am this morning and the muscle relaxant doesn't seem to be helping.

I think I have a few other options I'm also going to explore:

See if my neuro can act as my PCP and switch over to a medical group that includes these specialty doctors, so that he can refer more quickly.

Get a Gold PPO plan through my husband's work. It would kick-in October 1st and would allow me to go anywhere. The only thing that concerns me about this is that I'm not sure if pre-existing conditions would be covered, should I somehow get a diagnosis between now and then. I've only ever bought insurance through the marketplace here, so I've never had to worry about that. I'm not entirely sure how employer group plans work, but we're working to find out if that might be an issue.

Since the whole wheelchair incident yesterday, I'm actually back to walking again, which is a huge relief. I'm unsteady, but able to make it work. We mainly used the wheel chair yesterday because I seem to be having trouble with walking for any kind of distance. Just around our apartment seems to be okay.

Again, many many thanks to everyone who's chimed in.
 

Felix

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Signing in for another update in case it might help someone down the road.

My referral to USC came through faster than expected thanks to the wonderful team at my Neuro's office, and to my surprise, I'm headed to the Movement Disorder Center rather than the Neuromuscular Clinic. I'm assuming this means ALS has been ruled out.

Thank you again to everyone who gave me their insight on my post. I salute you for your bravery in facing ALS.
 

Nikki J

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Good luck. Please let us know what the diagnosis is. I hope it is very treatable
 
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