Spazmom

My Health Anxiety Story - ALS

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I’ve been reading a lot of health anxiety stories on here especially about ALS and I felt like maybe mine could be helpful to someone so I thought I’d share. 

 

This is a long story so to sum up if you don’t feel like reading: 

 

Symptoms:

-heavy legs

-foot cramping 

-twitching

-perceived weakness forearms, wrists, hands, ankles

-tongue twitching, perceived slurring

-maybe some coordination issues 

-possible thenar and calf atrophy (disproven) 

 

None of these happened at the same time, kind of episodic. Saw 3 doctors. None thought als. Had emg and NCS. This is over a period of about two months. 

 

Spoiler alert: I do not have ALS. I have anxiety.

 

Full story: 

 

I’m a 33 year old happily married mom of one, and I did not have a history of Health Anxiety before this event unfolded. I’ve always been type A, a worrier, and probably have always had some degree of General Anxiety Disorder. However, it never really affected my life in a negative way - well maybe it affected others in a negative way lol. Probably the worst case example would be my fear of others driving, which could be explained by past car accidents in which I’ve been a passenger. 

 

On Halloween day (2018) I had a fibroadenoma removed. We knew it was benign, but it hurt and I wanted it gone. It’s a simple surgery, but you have to go under. No problem, I’ve never reacted to anesthesia before and as a mom I’m looking forward to a solid nap. When I woke up, I felt this strange heavy sensation all over. Not alarmingly heavy, just a new sensation I’ve never experienced. It was like I was wearing lead around my legs. I freaked for a second but I walked out of there, so I thought “how bad could it be?”. 

 

As the days go on I notice my legs are still experiencing the same heavy sensation (to a lesser more manageable degree) especially when I run or get out of a hot bath or shower.  

 

Five days post op - I start to google.  

 

Go on, enter “heavy legs” into google. There’s some benign things and then there’s MS, guillan barre (which I knew it wasn’t), and some other more serious, attention grabbing things like myasthenia gravis.  I don’t freak out though, my follow up with my surgeon is the next day so I just resolve to bring it up then. 

 

The next day I bring it up with the surgeon and she just kind of shrugs her shoulders and is like you’re fine.  She didn’t examine me or ask me any other questions. 

 

Okay cool lady, but still not cured. 

 

I wait a few more days to see what happens and maybe it’s subsiding, maybe it’s not, but I decide (based on hours of relentless google research) that I need to see a neurologist so I could either let it go, or do something about it. I don’t have a GP at the time so I go see an urgent care doctor to start the process. 

 

She’s not very helpful. She can refer me to a gp who can refer me to a neurologist. 

 

Okay, fine. I ask her “do you think this could be MS?” I expect her to tell me how rare MS is and that it probably isn’t the case.

 

She doesn’t. 

 

She says that MS, for some reason, is more common in this area and that maybe it could be - but that “MS is weird, and ALS is weird.”

 

I swear I feel my eyes getting wider like I’m in 1950’s cartoon.  My heart beats faster and I start to sound hoarse. “What?” I ask. She just shrugs.

 

Did she just suggest ALS? Suddenly I forget my MS concerns completely. 

 

I know about ALS. I know about the destruction and the eventuality. But I don’t know about onset exactly, or what presentation looks like in the beginning. 

 

Of course I leave the office in tears. I have a son, she mentioned a terminal disease. Why would she say that? I’m not weak? Am I? Did she think I was? Maybe I am weak and that’s what this is.

 

I go to the GP that day, the PA sees me immediately. I love them. She does reflex tests, looks me over. She says confidently this is neither MS or ALS. Probably a reaction to anesthesia but nothing neurological.  But it’s too late for her reassurance. I’m internally panicking. It’s like nothing she is says is really going to matter.

 

A few days pass and my heavy legs symptoms and the perceived coordination issues have mostly subsided. But I’m down the rabbit hole. I’ve been on als forums, als sites, googling peoples first symptoms and digging up their stories. I’m not tripping, dropping things, I can do cartwheels and pushups and run 5 miles. The worst part about this specific anxiety is all the testing. I find sites that tell me to walk down stairs on my toes backwards and all kinds of other strength tests. I do this over and over and over. I run, I jump, I climb. Over and over. Stand on one leg and do it again. Seeing if I fail at anything even once. 

 

My close and very fit friend comes over and I make her compare how many push-ups she can do to how many I can do. She sees I’m at the end of my rope and she obliges me even though she’s in her “I have a respectable banking job” clothes. We do about equal reps.

 

None of this has any effect on how I feel. I still feel like something HAS to be wrong. At this point I can’t even narrow down the symptoms, some part of me is weaker than the rest but it jumps around. 

 

I try and tell myself I cannot possibly have this extremely rare disease - I’m too young, too active. Then I find the stories of young, active athletes. Their symptoms were so subtle. They were blindsided. I read and read and read. This has never happened to me before and I don’t realize I’m out of control. It’s like every piece of information I find will finally be the evidence I need that I’m fine. But I just can’t find it.

 

Suddenly, I develop muscle twitching. It’s like the Fourth of July inside my calves after something as simple as walking up the stairs. My arms twitch after holding my baby. The muscles around my knees explode after squats. This is all really unsettling. I’m trying to keep control of my mind because I feel like this is taking over my life. 

 

Later, I realize I can do more calf raises on my left than my right, I imagine my words start to slur, are my ankles weak? I notice dents in my thenar muscle on my left hand. Is that atrophy? I’m studying my body and testing it relentlessly. It’s fatigued in its entirety. My arms are burning all the time, my calves hate me. And then, came the depression. 

 

I’ve never been depressed before, I know that now. I think I always thought depression would mean I was sad, and something that with determination, I could just shake out of. But it’s not. I was consumed. I would cry all the time when I was alone, yeah. But worse, I wasn’t being a present mother, wife or human. I’m already like the worlds okayest mom and stuff, but I was quiet and kind of on my phone a lot looking up more ALS Information. The feeling was just that it was so hard to want to do anything, to get off the couch, to train for the half marathon I’ll probably not be running now because I just can’t even get up to do anything. I would watch my son play with his books and just couldn’t make myself get up to read them to him. 

 

I have to do something about this I decide. My GP wouldn’t refer me to a neurologist (because she felt like I wasn’t sick!) so I decide to see if I can find one that doesn’t require a referral.  Guys, this is rare. But I found one in Austin.  She doesn’t accept insurance which is how she probably keeps her schedule more available, but even with that it would still be a little over a week before I could see her. She’s popular and for good reason.

 

Okay, no problem. I can be patient. But I’m lying to myself. I cannot be patient. I make the appointment but I also google for neurologists online that I could speak to, right now, this instant. I found a pretty cool page called “just answer”- this is not a plug for their site, but I want you to know the resource in case you ever get in the same position as me.  I talk to a doctor almost immediately. I pay the extra fee for him to break it down for me. He is amazing. He never makes me feel like I have health anxiety, though he tells me that I do have anxiety. He explains to me about ALS, in great detail, and why I do not have ALS. I wish this guy could be my doctor for everything. He is so kind. I tell him my symptoms again and again and he maintains - this is anxiety.

 

Because of his help I start to mildly relax. My twitching reduces, I have more strength than I realized and I don’t seem to have any issues completing tasks. It’s going to be okay. 

 

I’m not going to lie to you, I ask this guy several more questions highlighting other perceived ALS symptoms I may or may not actually have (I can’t even tell what’s real and what I’m projecting on myself at this point) and he has to reassure me several times. I spend a lot of money doing this but I don’t really care. He knows me by name at this point.

 

A week passes and my in-person neurology appointment is coming up. The fatigue hasn’t really gone away. And I still worry that maybe something is going on that hasn’t been detected. So I go to the appointment. Guys, this is also expensive to do but worth it. So worth it. She’s epic. 

 

Her diplomas are on the wall, and one says something from the Mayo Clinic. Homegal has seen ALS a lot -I’m sure of it because you don’t train or work at the Mayo and not see it as a clinician. She’s sweet and doesn’t make me feel stupid. She listens to me for an hour. I cry a few times too. 

 

During the exam she checks my reflexes and examines me with a sort of patience I’ll never possess using a flashlight for fasciculations. I pass all the reflex tests and she explains to me what MS and ALS are actually like. Like we all know - failure. Progressive failure. It feels good in person to see this gal, to have her test me and not find anything, and then she offers to schedule an EMG at our ALS clinic just to chill me out. I take the offer, even though she thinks I don’t really need it and the soonest I could get in is January. I see her at thanksgiving so it’s a while away. But her insistence that this is not ALS soothes me. Temporarily. 

 

I know that sounds crazy. It is crazy. I’ve had a GP, online neuro and this very experienced and attentive neuro tell me I’m fine. Like not even a 1% suspicion. Why can’t I let this go. Because anxiety is a mental health issue. That’s really the bottom line. 

 

December passes really slow for me. I’m in the anxiety groups posting about little things I feel, asking about bulbar onset, trying to get more and more information to rule things out. I talk to the online neurologist again. He’s sweet and patient still. You do not have ALS, he says. Again and again in different ways. 

 

By the end of December I’m actually starting to feel better INSIDE. I’m running again, the twitching has stopped and any weakness I seem to have had has gone away. I consider canceling the emg but I don’t. Because I’m me. 

 

January 7th came and I go to the Neuromuscular clinic.  This guy sees ALL the ALS patients in the central texas area. That’s millions of people. I later ask his assistant how many ALS patients they see. Maybe 100 a year. Maybe a few more or less than that. That’s literally out of MILLIONS of people. Texas is the largest state and central Texas is one of the largest regions.  I think there are 28 million people in Texas alone and central Texas is more than a fourth of that. West Texas is small. A very very large region with a sparse population so ignore that on a map and most of the population is Dallas, Austin, Houston, San Antonio. I read a study once that put the ALS population in Texas around 1800 people give or take. That makes me feel better, selfishly. 

 

Before they start the NCS the doctor does another examination of me and asks me to go through my symptoms. I’m wasting this guys time and I know it now. But I tell him about the weakness and heaviness and the twitching but that it’s all kind of episodic now.  He also doesn’t look at me like I’m stupid or crazy. Which is nice since I feel both of those things. But he does already know I do not have als. I can tell this because he has watched me untie my running shoes while standing on one foot to remove them and he nods and says “good, that’s very good”.  He looks at the asymmetries I point out in my hands and calf and doesn’t even blink. Totally normal. 

 

His assistant, who is also a physician and is a very pleasant human in general does the NCS. The NCS isn’t exactly painful. It’s weird. My muscles jump around under his shock tool and there’s some hmming and ahhh’s happening. But at the end of the test, which I will remind you was uncomfortable but not painful, he’s very pleased with the response from my nerves and it relaxes me. 

 

The emg was actually less unsettling. There no shocking but I don’t really have an aversion to needles like some do. I mean I get Botox every three months people! Also, I had Kylie lips before she could drive a car ok? Lol. 

 

It was all totally normal. Come back if I experience any more weakness he says. And heads out the door. This guy is sure nothing is wrong with me. And this is the guy who sees people with stuff very wrong with them. 

 

Do I feel better? Maybe. Not really. Kind of. Sort of. Sure. I think we all feel like it could have missed something. I think we all feel like we know our bodies better than anyone. That’s anxiety. All this stemmed from what was probably a reaction to anesthesia, remember? Because I had a hard time remembering that. 

 

But I am learning to accept that this was just a hard few months of anxiety and many others in that clinic do not leave with that kind of result. They leave with a diagnosis. Maybe the worst kind of diagnosis. 

 

I hope me sharing this helps and at the least makes you feel not alone. Health anxiety is awful. I’m such a giving, loving person and I feel like during the time I was experiencing this I was selfish and tuned out. It changes you. The next step I’m going to take is to work on techniques to control my anxiety and realize when it’s getting out of control. I’m not making any resolutions about it. I’m just taking it one day at a time, which is all what anyone really can do. Xoxo. 

 

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What do you mean he told you to come back if you have any other weakness? Thought you didn’t have any?

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I had perceived weakness. Which is kinda how I ended up there to begin with. Specifically my right calf which he did not see any weakness in the exam. He also didn’t see any in my right forearm. He said come back if I have any other weakness - meaning come back if I thought I had weakness. After pregnancy and all that my body is really different anyway and I wasn’t exactly that great at working out. So maybe any perceived weakness I do/did have is related to that. That I like to sit and eat!! I can be pretty lazy.

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Thank you for posting. So much of what you said i went through too. Especially the head in your phone all the time.. not being present. Ugh als anxiety is a hard one..I'm coming up on two years of this fear in two weeks and at times I still over focus on my leg..questioning, does it feel weak today. Ugh. Crazy!

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@Holls I feel like I’m not out of the woods on the als Anxiety, even if I’m out of the woods clinically. Which is insane. You should see the way I look at my left thumb every day, several times a day and that doctor was just like, this is nothing. Sigh. It’s so silly when you think about it, but it’s dibilitating sometimes. 

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8 minutes ago, Spazmom said:

@Holls I feel like I’m not out of the woods on the als Anxiety, even if I’m out of the woods clinically. Which is insane. You should see the way I look at my left thumb every day, several times a day and that doctor was just like, this is nothing. Sigh. It’s so silly when you think about it, but it’s dibilitating sometimes. 

Yes I went to my PCP over my foot. I was obsessed about it for months and months. I thought the left arch was thinning.. atrophy.. she barely looked and said NO!! And told me to write als on a paper and flush it . Flush the worry away for good. So what i worried over for months was dismissed in less than a minute

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I’m just stuck because I just finished my physical therapy appointment and I asked her if my left sided finger extensors weakness was normal and she said normal for what I have 😑 (bone spurs in c5-c6 supposedly )

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Spazmom....thank you for that wonderful post and for sharing your experience and mental processes...I’m sure almost all of us here can relate one hundred percent to your thoughts and feelings throughout your “ordeal”’.  I’m currently in a state of twitching and am trying my best not to fall the ALS worry hole...your post certainly helped!  And if it makes you feel better,  I absolutey LOVE the JustAnswer service and I’m embarrassed to think about how much money I have paid...but you can’t put a price tag on peace of mind!  (PS...there is also an online service based in India called “Healthcare Magic” which I have used numerous times and you can consult unlimited specialists for $35.00 for a month....I’m not advocating consulting online docs necessarily, but for me they have been priceless to “fill in the gaps” between my doctor appointments!)

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Thanks for sharing this.  I can totally relate to almost everything you said.  I’ve been dealing with similar symptoms for 17 months now - bodywide muscle twitches with occasional hot spots, perceived weakness and rubbery legs, muscle tightness and cramping. I have no atrophy and no real weakness. Even though it’s been 17 months and I’ve had periods where symptoms did improve and I gained some peace of mind, when the twitches flare up so do I.  I have had all the necessary tests, including a clean NCS and EMG at five months in, yet I still can’t seem to get the fear of you know what out of my head.  It’s almost like I can’t believe the doctors or keep second guessing them. Could the have missed something?  Did I have the EMG too early?  Have things changed since then?  Those are the types of questions and keep asking.  Even though you know what is rare, and even more rare at 32, I still can’t seem to ditch this fear.  I’m constantly looking for answers.  Was all this twitching caused by the tick bite I had months previous?  Could it have been caused by my bad sinus infection that I had?  I remember reading somewhere that BFS often begins after a bad sinus infection.  Perhaps it’s tied to all the antibiotics I was on?  Maybe I picked something up while doing our home renovations and working amongst all the dust, paints, and what not? Who knows, maybe it’s a gluten allergy.  I just can’t seem to accept that all this twitching is caused by anxiety (even though itnmost certainly is).  What I do know is that when I’m stressed, anxious, and hyperaware of these symptoms, they no doubt appear to get worse.  I totally psych myself up! The thing that annoys me is even when I don’t feel stressed I can still feel my my muscles twitching here and there.  I had a long stretch where I seemingly accepted the benign diagnosis and all was greatly improved, but a new twitch or symptom shows up and the fear sets in again.  In the end I just can’t seem to accept the fact that after 17 months it’s not something horrific.  My mind automatically goes to this rare disease.  As you stated, just taking it one day at a time.  I’ve been using techniques for anxiety reduction, exercising, and eating well.  I’m going to be meeting with therapist who specializes in CBT for OCD.  As I stated before, I never had any anxiety issues until now.  My OCD is self diagnosed.  This ALS fear is no joke!  Hope all this helps and the twitches will subside.  It has had a pretty good grip on me for quite a while.  Can’t let fear win! This community has definitely helped me realize that I need to get my anxiety under control and this is what I intend to do!

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@Missy2626 yes! It was an embarrassing amount I spent as well. But it just helped me so much to move on little by little. I’ve been on healthcare magic too but I love just answer because it easier to use and they respond very very fast!!! 

@JDMez in the end my twitching was tied to the anxiety of twitching lol! I wasn’t putting my body through rigerous dexterity exercises and irritating the muscles. It sounds lame but mediation helped. There are apps for it like headspace and stuff which is what I used but I really did find it was a mental connection. My blood pressure is super elevated too from the stress of it all. I also lost 12 lbs during the depression phase. Still... I can complete tasks and weakness - true muscle inability to action is required for als. Or dibilitating unrelenting cramping or spasaming. One doctor said to me “twitching without weakness is meaningless.”

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Spazmom I I love your information!  I really needed to hear that now about the twitching!  I was primarily a “skin worrier” with my health anxiety and went through what i believe was a nervous breakdown over it back in 2016.  I still worry about skin issues (go figure, I recently learned I have a relatively rare nasal papilloma that although benign, can be aggressive and turn cancerous, so I’m having it removed end of this month....quite ironic!) but my health worries are all over the place depending upon what my current symptoms are.  For the past three weeks it’s been the twitching...I’ve been following everyone’s posts here for a few weeks but quite honestly I’ve been too mentally exhausted to comment and interact with everyone.  And like you, my blood pressure has been through the roof lately over this.  On the online doctor topic...lmao my husband would freak if he knew the amount of money I’ve spent over the past two years on them!  And I agree that JustAnswer is best when you need that immediate response!  I even keep track of what time it is over in India so I know whether I’ll get a response soon in HealthCare Magic 😂. I am so so happy for you that you had a great neuro appt...put the ALS fear in the garbage and forget about it...you are perfectly fine (but I know sometimes it takes a few days to totally process and decompress from these appointments)!

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@Missy2626 skin stuff is actually sort of what I studied in school. The key to skin, is always catching it early. And if you’re self aware like that it will always be caught! And it’s super common so they check you really thoroughly. I feel like als is one of those things with no possible cure and it’s not really defined and noticeable until it is. Maybe that’s why I find it so terrifying. It has to be one of the worst things imaginable. I hope to that end, a cure is found In the next decade. I keep hearing about how close we are. Doctors seem really positive it will be treatable in the next 10 to 15 years or even sooner. I hope!

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4 minutes ago, Spazmom said:

@Missy2626 skin stuff is actually sort of what I studied in school. The key to skin, is always catching it early. And if you’re self aware like that it will always be caught! And it’s super common so they check you really thoroughly. I feel like als is one of those things with no possible cure and it’s not really defined and noticeable until it is. Maybe that’s why I find it so terrifying. It has to be one of the worst things imaginable. I hope to that end, a cure is found In the next decade. I keep hearing about how close we are. Doctors seem really positive it will be treatable in the next 10 to 15 years or even sooner. I hope!

Yes...believe me...I’m on top of it with the skin checks Spazmom, to the point where I have twice yearly checks with my derm and I also take advantage of some free screenings put on by our local cancer hospital.  There’s so many different perspectives to put on our health fears...rhe skin is something we see on a daily basis, so it’s easy to obsess over every little spot or change or imperfection.  With ALS, as you said, it’s progression and inability to treat is utterly terrifying and that’s why it can be a health anxiety sufferers worst nightmare, as we can see from the multitude of recent posts here.  

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Thank you for writing this! I know I am not alone. Mom of three young kids here - only 30. I started twitching on what I know was a stressful week - my husband was traveling and I found out our dog had cancer. Of course I googled twitches and what do ya know?! ALS RABBIT HOLE. I have been twitching for a month - which I’ve been trying to talk myself down from. I also have been living on my phone reading every article - thinking - could this be me? (Currently writing this in a locked bathroom). I almost got over my anxiety until I developed hand and foot cramps this week.  I don’t have any weakness - just went to the gym today - but did anyone else develop cramps from anxiety?! I am back down the hole again. I went to my gp to have B12 levels checked. I really want to cry and go to a neurologist but I deep down I feel like this is stemming from anxiety

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@Slttry it sucks i know it. I still sit here and feel that my tongue is twitching and random stuff still is like an als spotlight in my head. But you don’t mention any weakness. Twitching without weakness means zero!! And cramping Is actually normal too.  Cramping/spasms in als are more like a finger locking in a weird position or an unrelenting spasm where maybe you can’t walk. It’s very definable. It’s more like spasticity. In order to have als - you MUST have weakness! You’re totally fine. Nothing suggests als. Your symptoms are basically diagnostic for anxiety!!

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I seriously appreciate you replying - you have no idea! I’m trying to bury my anxiety so I can “let go” of my symptoms. Pretty sure my muscles are only cramping from holding tension in them. Definitely not at the point of staying in a position - they only feel like the start of a cramp for a few moments and then dissipates.  Thank you for clarifying - I needed it. I sometimes wish google wasn’t invented lol! No one would be searching in the library for their vague symptoms! 

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There are really very few resources that are like specific. I had to dig and dig and eventually I just paid to speak with that online doctor.  If you have some time and don’t mind spending 68 dollars, go request dr. Subbanna on justhelp.com that’s the doctor that helped me. He is incredibly in depth - like so in depth. It gave me a bigger picture understanding of the disease and how it didn’t apply to me at all.  I could tell you to stop combing als forums and stuff but I know you won’t, so it’s better to speak with dr.s and list out all your symptoms no matter how benign. There are other doctors and other sites too but this guy like noticeably made my anxiety go down. I was able to go on with my life and every day is easier. 

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Also, if you don’t want to do that look up Gustavon zi on YouTube he has a lot of als videos about twitching! They’re super helpful. 

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All this twitching starts us on what is no doubt a tough road.  As has been said on here before, we most likely twitch because we’re anxious, and we’re anxious because we twitch.  When we are anxious we no doubt tense up and often our breathing gets much more shallow.  I find myself often holding my breath for no apparent reason.  My wife has even told me that I don’t breathe.  Our muscles need oxygen - tight, tired, oxygen deprived muscles twitch.  Not to mention, twitching muscles for sure get tired of twitching. All that activity is no doubt tiresome.  This can lead to even more twitching, cramping, and tightness.  My legs, even as I’m writing this are popping a little and feel as though I just ran a marathon.  No doubt people who are scared and obsessed over their symptoms can manifest and make their symptoms worse; we become hyper focused and totally honed in to our bodies.  I’ve been dealing with all of these symptoms for going on 18 months now.  I had a span of 7-8 months, after clean EMG, where I seemingly accepted all this was tied to anxiety, went right on with my life, and thought myself cured.  Sure I still had a few here and there, but nothing like the height of my worrying.  A new hotspot twitch in my forearm started up, took to the internet, and boom, back down the rabbit hole.  I was no doubt stressed preparing for the arrival of our first baby, among the other stresses of work and everyday life.  With all that stress and new online research I’m now twitching all over, little pops here and there, with tightness and all sorts of other weird sensations.  I’m constantly asking what if’s.  I went in for my routine yearly physical a few days ago and discussed this with the nurse practitioner who checked me out.  Pretty much told her everything that’s been going.  She said that when she was in college she twitched pretty bad on and off for quite a while.  She did a strength test on me and checked all my reflexes; everything was perfect.  She’s retesting all of my labs, including lyme and metals.  She said she’s not big on medication, but that the best thing she ever did was start a low dose of anxiety meds for herself to help with her anxiety.  She recommended a low dose for me, but I decided to start up with some CBT first, and focus on diet, supplements (magnesium, CoQ10, B vitamins), probiotics, and exercise first.  My wife and I are both vegetarians - I’ve been one since I was roughly 6 years of age.  I discussed seeing a nutritionist/dietitian with her and she thought that it might be a good idea.  I’m even thinking about starting up with some CBD oil, as I have read that it can do wonders.  Some research I have done also showed that a gluten free diet may prove to help.  I read a post the other day (not on this website) from someone whose neurologist recommended a gluten free diet in combination with CBD oil - he said that a few weeks later the twitching all bit stopped.  No doubt intriguing. All the reading and obsessing only does one thing - raises our anxiety and fuels our symptoms.  The twitches are like the terrorists...don’t let the terrorists win!  Take em on like Donkey Kong!

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