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Another Anxiety Filled Twitcher Story

PostPosted: May 20th, 2013, 1:34 pm
by Mike Martin
Hello! I've been following posts on this board for a few months now. I'm not sure if I'm dealing with BFS or something more sinister, but here's my story:

A few months ago, I had a twitch on my right calf under my knee. It was non-stop and came with a little pain. Now, I had recently started running wind sprints every other day after doing little physical activity for a few years, and I chalked it up to that, but still worried I had a blood clot or something. I told myself that I'd deal with it until Monday, and if it was still an issue, I'd go see the PCP. It was gone in two days. Sweet.

The following Tuesday, I woke up in the middle of the night with pins and needles in my left leg and arm, and my entire scalp. I was able to shake out the arm and leg, and the tingling on the scalp went away after a few minutes, but it really freaked me out. Since I thought the pins and needles thing was caused by a lack of blood flow, I didn't understand how I cut my scalps blood supply! So of course I turned to the best source of medical information available: Dr. Google. The good doctor immediately led me to sites describing the symptoms of MS. To go along with this, the twitching from the previous week, and the new twitching all over, I've had carpal tunnel-like symptoms for well over a year. I had an EMG last May which came back negative for anything related to my nerves (ruling out carpal tunnel), so when I read MS can give similar symptoms to carpal tunnel but without showing up on an EMG, I was freaked out. My twitches got worse. I started having burning sensations in my feet and small pains throughout my legs.

I was in my PCP's office within days. She said MS was a possibility, but allll the way at the bottom of her differential. She ordered a brain MRI with MS protocol, which came back normal. (My girlfriend disagrees that I have a normal brain). I was good for a few days before my follow up appointment-felt like I dodged a bullet. At the follow up, PCP suggested that my leg issues might be from a back injury, and sent me off to an orthopedist. And then I started consulting Dr. Google again. I read about brain MRIs not ALWAYS catching MS. I started having fairly constant restless feeling in my left leg, and read an anecdote of how that was someone's first symptom of A**. Anxiety then shot through the roof.

Spinal orthopedist specialist did a full clinical exam (which I believe it pretty similar to a neuro exam) and everything was normal. He had me do PT for three weeks because he suspected there was still a compressed nerve somewhere in the back, and said if that did nothing, we'd do an MRI. So three weeks later I go back, and he orders the MRI. However, it makes it clear to me- He still doesn't think it's anything sinister. When I mention MS, he nearly yells at me: “I've seen MS. You do not have anything that looks like MS. I will give you a 99.999% chance that you do not have MS right now. Stop reading on the Internet!” I was *beep* off at being yelled at in the office. However, my MS fears were gone after that.

MRI came back clear for any back issues or spinal lesions. Sweet, but *beep*. Great for further confirmation of no MS, but still no diagnosis for what's going on. On my final visit, the Ortho suggested I move on to a Neuro. However, he said he really thinks most of my symptoms are being caused by stress and anxiety. Had an appointment with the PCP later in the day to go over results, and she agreed about stress and anxiety. However, since she still believed my arm was due to carpal tunnel, she ordered a referral to a Neuro at the local major hospital (top 10 neuro department in the US), and increased my anti-anxiety meds.

Unfortunately, A** fears got worse. It didn't matter that a lot of what I read logically said it was unlikely (body-wide twitching that usually goes away when the muscle is flexed, muscle pain, no clinical weakness, and really only mild muscle fatigue- heavy legs, etc.) it was the things I read that fit that scared me (tightness in ankle, strange restless feeling in my lower leg, feeling like discomfort is spreading up my leg). Started CBT to try to cope with the anxiety.

It took two weeks to get a reply from the major hospital, but I received a letter refusing to take my case. I thought only Dr. House could reject patients! The letter said that based on tests that I've already had, they don't think they can find or do anything different. The next day I get notice of an appointment set at the smaller teaching hospital for July.

So currently, I'm doing okay with my anxiety over A**. There are days I freak myself out over something new, and days when I realize the percent chance of a 30 year-old like myself NOT having A** is around 99.9997% and feel pretty good. My PCP agrees with my positive view of the big hospital rejecting my case as a good sign- she said she doesn't think they reject that many, so when they do, they're confident the patient doesn't have anything ominous.

My plan for the next two months is live like I tomorrow isn't promised, and being able-bodied is finite no matter what, while still trying to keep my stress level about irrational fears of neurological boogeymen to a minimum. So far, this board has helped a lot with that. Thanks for that!

Re: Another Anxiety Filled Twitcher Story

PostPosted: May 20th, 2013, 2:36 pm
by aztwitchy
hi welcome.

what was your emg for last may?

glad to hear you are working on the stress portion, are all your symptoms still occuring?

Re: Another Anxiety Filled Twitcher Story

PostPosted: May 20th, 2013, 3:05 pm
by Mike Martin
The EMG and NCS last May was looking for carpal tunnel in my dominant arm. They didn't find anything, and the neuro actually seemed kinda irritated I was there. Unfortunately, I was laid off that same week, so I didn't have insurance to pursue what was really going on, plus a lot of it got better over the summer since I was on the computer less.

Now the only real symptoms I have are the twitches (mostly at night), heavy legs, tightness and pain from my feet to my thigh on one side, and then the same carpal tunnel like symptoms I had before (pain in wrist, hands, fingers, and forearm, along with what seems like diminished finger dexterity). However every single thing will go away at times and come back later.

Also eyelid twitches, but I've had those for years.

Re: Another Anxiety Filled Twitcher Story

PostPosted: May 20th, 2013, 4:34 pm
by mwagner
If you only have twitches at night, I see why the hospital declined you. Even if you had twitches constantly (like most of us) - I see why the hospital declined you. I think your attitude is very good, but I think you are likely to be like most of us - having a benign disorder that will take some time to get used to, but isn't dangerous. Has anyone explored restless leg syndrome with you?

Re: Another Anxiety Filled Twitcher Story

PostPosted: May 20th, 2013, 9:59 pm
by Mike Martin
I've read about RLS but considering I have the restless feeling pretty often during the day, and movement doesn't usually do much for it, it doesn't seem to fit. Either way, none of my doctors have brought it up. All of this started in March, so compared to the timelines most people who post here have, this is all very new. I'm hoping I can get fairly definitive confirmation of nothing serious in July.

Re: Another Anxiety Filled Twitcher Story

PostPosted: May 21st, 2013, 8:23 pm
by TwitchyMark
Hi, def sounds like your symptoms are nothing to worry about. In hindsight, I would categorize my neuro visit back in Feb. as a waste of time. They called me again saying they had to reschedule my followup on June 14 and the next available day was "a long way off". I told pretty much told them... don't call me, I'll call you. It is doubtful I will ever see them again, knock on wood. I get a feeling I'm not a priority for them.

I had a terrible heavy, RLS, ticklish feeling in my legs, feet and even arms for quite a few weeks... worse at night. This on top of the twitching. I resorted to epsom salt baths, bought a portable spa for the tub, a massaging foot bath and would take hot showers like they were going out of style. I even made a magnesium lotion out of dollar store cocoa butter cream and epsom salts and rubbed it on my legs every night along with Ben Gay and Icy Hot ointment on occasion. That was my worst period with quite a few sleepless nights. Of course, all the massage gear now sits gathering dust, lol. But I would have paid almost anything at the time to exorcize my possessed body.


Re: Another Anxiety Filled Twitcher Story

PostPosted: May 21st, 2013, 8:39 pm
by TwitchyMark

Did you have a cervical MRI or lumbar? I didn't notice if you specified. In any case, I recommend getting another knowledgeable person to look at it. My PCP poo pooed my neck MRI but I made sure to take a look at it myself along with the report. I actually did have a moderate disc herniation at c5-c6, nerve root compression, possible stenosis and other issues that they never told me about. I wouldn't rely on what they say is not causing your symptoms. They can be wrong or, in the least, prematurely dismiss things. As for the dr. who nearly yelled at you, many of them have big egos and don't like anyone impugning their judgement. That is the way so many things are missed or misdiagnosed these days. Narcissistic doctors who intimidate patients.

Re: Another Anxiety Filled Twitcher Story

PostPosted: June 6th, 2013, 11:00 pm
by Mike Martin
I had both a cervical and lumbar MRI, and both extended a little to cover most of my thoracic, which was reviewed by a radiologist and a spinal orthopedist. The ortho actually had it on his computer and was able to zoom in and out and mess with different levels and such (it was kinda cool) to show me that there wasn't really anything going on with my spine. Which was great news and disappointing at the same time.

Really, in hindsight, the orthopedist yelling at me about my MS anxiety may have helped. I wasn't doing what a lot of people insist has to be done- trust the judgement of my doctor. This guy has been working in his field longer than I've been alive, and given a lot of similarities in symptoms between spinal conditions and neurological issues, I'm sure he's had plenty of patients come through his office who actually were suffering from MS or worse. Him yelling kinda got my attention to see that this wasn't just some random dude's opinion of my symptoms- it's an expert opinion.

Lately things haven't been too bad though. Aside from an eyelid twitch that won't go away, most twitches are scattered and not that distracting. The right leg is still my worst issue, and while it comes and goes, this week it's been particularly annoying. Still not noticing any weakness, loss of balance, or anything sinister. Just keep reminding myself that without any of that, it's unlikely I've anything to worry about.

Re: Another Anxiety Filled Twitcher Story

PostPosted: July 9th, 2013, 3:19 pm
by Mike Martin

Today was my neuro appointment. The resident seemed irritated with me when he realized all my fears were based on Internet reading, even as I tried to explain the things I felt sure felt real. He eventually got the neurologist he works under, who is a neuromuscular specialist and director of the region's only ALS Foundation approved clinic (which surprised me). She put me through a quick physical exam and promptly dismissed any possibility of ALS. She pointed out that my reflexes are normal, I have no real weakness, I'm too young, etc etc. She scheduled an EMG for next month to check for carpal tunnel in my arm and some nerve irritation in my leg. Either way, she was very patient, answered all my questions, and made sure I understood that, twitches, tingling, and sensations or not, I absolutely that looks like ALS.

Coming from her, and her being so emphatic that I have nothing serious, I'll not hopefully calm the hell down.

Re: Another Anxiety Filled Twitcher Story

PostPosted: July 11th, 2013, 12:39 pm
by TwitchyMark
Glad to hear your spine is in good shape. Not surprising considering you said you were young. I might have let it slip to my docs or to the nurse about checking out the internet. I think it is a mistake to divulge any of that as it can make them prejudicial, focusing on anxiety as a cause and possibly overlooking other things. All in all I feel I really wasn't given the attention I deserved by my neuro. Good to hear you found a good one. As for the ortho yelling... I do appreciate docs who are straight with their patients, tell it like it is and don't beat around the bush. Much better than the wishy washy types who only leave things open ended with more questions than answers in the mind of the patient. I seemed to get the latter and had to bring myself to my senses over a longer time than necessary. And I had dysphagia as my initial issue which I don't wish on anyone. When out of the blue you can't swallow right or at all at times, it is not something easily dismissed as benign.

Update II

PostPosted: August 12th, 2013, 8:39 am
by Mike Martin
So my EMG/NCS was this past week. It started out with an intern freaking me out by doing a short physical exam and noting that I'm hyperflexic all over. So right off the bat, my imagination is going wild. The other doctor in the room performing the NCS is a fellow that's about 5 years out of med school, and she's much easier to work with. They check my both my arms (which they say come back normal) and then start on my leg. I kinda lost it a bit and mention how I'm worried whatever is going on in my leg is a sign of ALS, and I'm pretty scared of dying that way. The doctor stops, looks at me, and says very clearly “You do no have ALS.” She points out how nothing she's seen so far today even remotely looks like ALS and asked me why I think I have it. I sheepishly say the Internet, and she becomes the 7th or 8th doctor to tell me to stop reading about ALS on the internet.

Next they did the EMG, and the much more experienced neuro I saw last time sat in to supervise (one of her areas of expertise is electrodiagnostics). At the end, there wasn't much time for a good run down of preliminary results since they all had a conference to get to, but the experienced doctor explained that everything on the EMG and NCS looks normal. Her only concern is some possible minor carpal tunnel issues in my right hand, but nothing else. When I of course asked about ALS again, her reply was: “Look, if you have ALS, I'm in trouble, because then I've probably ALS. You're showing NOTHING to indicate you have it. Relax!”

So I now have at least 7 doctors, 3 tests, and 1 girlfriend who says I don't have this deadly neurological disease (which should be enough). But still incredibly frustrated because twitching aside, I have no clue what's going on with my left leg!

Re: Another Anxiety Filled Twitcher Story

PostPosted: August 12th, 2013, 8:53 am
by SecretAgentMan
So the question is when will you decide to let go of this irrational fear of ALS? You realize that it is you that is hanging on to this notion despite the reassurances of the forum and western medicine specialists. There are mental relaxation techniques and methods for training your own mental discipline. You might want to look into them. The sooner you let go of this irrational fear, the sooner you will quit torturing yourself.

Re: Another Anxiety Filled Twitcher Story

PostPosted: August 15th, 2013, 3:14 pm
by Mike Martin
I believe I can, and compared to where I was a few weeks ago (which is better than I was a few months ago) I'm doing better at keeping my mind on rational things and away from the irrational, like ALS. The frustrating part of me is just not know what is going on- the parastesia, the pain, and what looks like atrophy in my foot- it's scary stuff. And without any even possible diagnosis, let alone a treatment plan, it freaks me out. I've come to accept my twitches at just a normal part of whatever is going on, no matter if it's stress or something else. It's just been harder for me to do with the issues in my leg.

To add to my frustrations, I cannot get in to see that Neuro again until November. She told me to call her office to schedule a follow up, and even mentioned that I should let them know that I don't need to wait 2-3 like a new patient. However, even when I mentioned that to the scheduler, she said there was nothing she could do. One of the worst aspects of seeing an "in demand" doctor, I suppose.

Re: Another Anxiety Filled Twitcher Story

PostPosted: August 15th, 2013, 5:37 pm
by cecsix
Mike, your story is fairly similar to mine. I haven't seen quite as many docs as you have, but I've had the same speech from my Neuro has told me no way it's ALS. Twice. Even wrote it in his reports, which is nice. At least twice a week, I pull out the full report and read them for reassurance. As if they might say something different one of these times. But my symptoms are also like yours.....something weird going on with my left leg, I see what I believe to be atrophy, it feels weak/awkward at times. But the EMG picked up nothing abnormal.

Re: Another Anxiety Filled Twitcher Story

PostPosted: April 8th, 2014, 12:55 am
by Mike Martin
Hi again. I just wanted to post an update- a success story of overcoming some twitchy anxiety.

Since the last time I posted, I saw the neuro once more. Again, another resident did a neuro exam with some basic tests and didn't see anything wrong except for some brisk reflexes. The main doctor came in and again assured me that I not only do not have ALS, but if I came in talking about ALS she was going to yell at me. :) However, I showed her a video I took with my phone of some twitching in my left chest near my shoulder that went on for 3 months. From that she said there was a very, very slight chance of Kennedy's Disease, and wanted me to do a DNA test to make sure she can rule it out. She also ordered blood tests for hormone and vitamin levels. The DNA test for Kennedy's came back negative, but the hormone and vitamin tests showed deficiencies. I have been on supplements since.

Through all this, I was taking an anti-anxiety med (ativan), an antidepressant (Cymbalta), and seeing a therapist for CBT. That went on for 4 months. I've now been off the anti-anxiety med and out of CBT for 3 months, and switched the Cymbalta to something less expensive (thanks, insurance jerks) and can proudly report I'm doing well.

I'm over my ALS and MS fears. I still twitch, I still get strange feelings in my legs, and over the past few months I've noticed some jerks (maybe large twitches?) but none of them control my life like it did a little less than a year ago.

Point of this: Trust your doctors. If they tell you that you don't have something, it's pretty *beep* unlikely that you do. If you can't accept that, and you fears are ruining your life, get help. Don't let rogue muscle signals control you.