Hi, I’m new and extremely anxious

[iadevaia16]

I’ve been reading these threads for several months now. And I never wanted to post here. I’ve been diagnosed with BFS. I had an emg after about 2 months of twitching and cramps. NEURO said nothing was wrong. I have two psychologists and am on Zoloft. I really have made progress. That said, my problems are stupid and minuscule and please feel free to be as mean as you possible. But I am going to ask a question because Something new happened today and I’m frankly terrified. I’m 40 male etc.

Anyway, I have a reoccurring twitch in my left hand (okay fine). The twitch is below my pinky and on the side. I have no real weakness. No failure. (I read the post). I found an indent at the same point that I constantly twitch. I’ve been moving my hand and fingers around. My right fingers are stronger than my left, but I can still move my left fingers around. Just not as well.

If it was just the indent then fine, but it’s the indent in the same exact place of the reoccurring twitch. I also got an inexplicable bruise on that hand about two weeks ago from bench pressing. The same indent mark is not on the other hand.

 

[ShiftKicker]

Hi there-

Please read here to learn about twitching, and posting rules, etc: Read Before Posting

We're not in the business of being mean to people- and if you've come here for that for some reason, yikes! We do expect folk to read the above link and hope that they will only post if their questions are not answered there. It's not clear exactly what you'd like the folk here to do for you though that your doctors haven't already done.

 

[lgelb]

A lot of people who come here concerned about ALS seem to see a "dent" in the area of twitching. In the absence of ongoing physical limitations, it has never come to anything that I know of. If you have some slight nerve injury there, like from how you keyboard/text, esp. with undue pressure, that can amount to both. So consulting with your doc, you might consider following some hand exercises along on YouTube etc. or s/he may have a regimen they recommend, or if there is not improvement, refer you for hand therapy.

Many people have differences in how their hands work. Generally one is dominant, one is used more for mousing, you may sleep on one side, tuck one in when you sit, clench one more at rest, etc. and certainly over time if you are not working or gaming ergonomically, those differences can become more pronounced.

Talk to your doctor, but there is no reason for concern as regards ALS.

Best,
Laurie

 

[iadevaia16]

I would never come here to be mean. I just meant that my issue is petty and unimportant.

 

[Nikki J]

Shiftkicker meant that we do not want to be mean to you. The aove advice is solid and dents are not atrophy. It is wonderful that the neuro found nothing wrong

 

[johnny5]

ALS diagnosis comes from eliminating all other possible causes. BFS is a cause. So would cervical myelopathy, and dozens of other conditions. Understand that it is human nature to imagine the worst possible scenario. I think it falls under our basic instinct around fight or flight. We want to hope for the best and be prepared for the worst, which is without a doubt a safe call. But the majority of the time, it is a false flag. Relax. Talk to a specialist. Get a handle on the issue, and life is much better for you.

Until you have ruled everything else out, there is no reason to worry about it. The kind of stress that leads you here is not as healthy as it may seem. This concern should be explained to your primary care provider so that a professional can check on it. If they think it is nothing to worry about, that would be a professional opinion.

Trust your doctor. Enjoy life, and try not to commiserate in unfounded fears. You will be much happier in the long run.

 

[iadevaia16]

I appreciate all the feedback. As I suspected, this seems like the wrong place to ask these questions. Tbh, whether I develop real muscle weakness or real atrophy remains to be seen. There is no certain way of determining these things. Asking people online won’t change anything. I have become obsessed though. I can’t stop. I literally cannot stop. People say things about the rarity, but it’s the most common motor neuron disease. And when you have fasciculations, cramping and fatigue present, your chances are increased. The research on BFS is not extensive and some of it is not encouraging, but it is what it is.

In any event, thank you for your responses. I appreciate them. I will now show my way out. I have nothing profound or insightful to say.

 

[iadevaia16]

Would you say that a person with a clean EMG after 2 months of twitch/cramp and no weakness 3 months later would be ridiculous to think they had ALS? Even if they found out they had bilateral hyperreflexia and started having more myoclonic jerks? I don’t know what to do with this information. Should I get another emg or just leave it alone. I also still twitch and cramp.

 

[lgelb]

I would hope your neurologist or primary care doc would have ruled out sleep disorders and that you would be thinking about the quality and quantity of your sleep. I would see no point, unless they did, in another EMG 2-3 months after the first one, without any functional deficit.

Best,
Laurie

 

[ShiftKicker]

Merged post with already open thread- if you could keep posting in this thread, it helps keep things organized. Thank you

 

[iadevaia16]

Thanks, I actually just checked my initial Emg paperwork, the Dr states that I have “symmetrical reflexia” so he was aware and it didn’t seem to have any impact on the exam whatsoever. That makes me think that this idea about hyperreflexia is often skewed. Meaning, unilateral hyperreflexia is more problematic. The BFS community tends to be on the uh, anxious side, and are more likely to have bilateral hyperreflexia than other less anxious people.

That said, the myoclonic jerks can be troubling, but again, those can be a symptom of anxiety too.

To your comment: He wanted to give me an mri and a sleep study, but it was too expensive. He also stated he had a high degree of certainty that I didn’t have any concerning condition. So I went home and me and my wife are like “um, why are we gonna pay a ton of money for an exam that I don’t need.” Meaning, I have myoclonic jerks, twitching, cramping and hyperreflexia. MRI would be for tumors, lesions, MS etc. I don’t have blurred vision, slurred speech, no definitive atrophy, no weakness, cognitive delays or issues etc.

If I get them then obviously I’ll have to act, but genuinely, I’m not sure if any of my symptoms can’t easily be explained by BFS and anxiety.

Maybe I’m wrong, but this fixation on symptoms and tests and doctors etc. for lots of people is the actual problem.

Also, my wife gets twitching, cramping, myoclonic jerks and has for a while. I just realized this. Idk I’m rambling

 

[affected]

Your symptoms can totally be explained by BFS and anxiety. You are fixated on having something that you have been medically cleared of, please just stop and think about that for a moment.

I really think it is time you stopped here as you have already said this isn't the place to keep asking this stuff over and again after we have clearly given our opinion. We can't see you and examine you. Please return to your doctor and allow yourself to be open to having other issues checked. To not do some tests because they are expensive, then insist you really think you have ALS just doesn't make sense. I truly wish the best as you get help returning to full health.

 

[iadevaia16]

I just paid for a membership, but I’ll be blocking the site after this post. Not because I’m cured of my obsessions, but because it’s not your job to quell my anxieties. Just want to say some stuff and I’ll be on my way. And I promise, (after briefly waiting for your responses, if any) I will not return.

1. There is something absolutely remarkable about what you guys do here. To be patient and kind to people (who are often perfectly healthy) as they desperately look for you to soothe their anxious misperceptions IS a bit super human. An admirable demonstration of courage, compassion and patience. That level of virtue is absent from most corners of modern society.

2. My father has been suffering with Alzheimer’s for about 10 years (he’s 67). I go see him on the weekends. He’s in the advanced stages now. When I visit him, he mainly just lays there sleeping. Every once in a while getting up and looking at me with a confused smile. If he can speak, it’s typically one word like “yes” and it’s preceded by a stuttering effort. It’s a weird thing. I can remember him so vividly prior to his cognitive deterioration. Alzheimer’s is a really shitty disease. This might be tied into the psychology of all this and I’m not sure why I’m saying it here, but there it is.

3. I didn’t start twitching until October. It was during a period where I saw that my left ring finger had a small tremor that made me afraid that I was getting Parkinson’s. And then one day I’m in bed evaluating my physical sensations and my little toe twitches. This quickly spread everywhere. It was followed by cramping. Then I went online. Since this point, I’ve been lost in some bizarre universe of constantly trying to reassure myself that I don’t have ALS. Now every three days I get a new symptom or worry. Yesterday, I had a a really fast and large twitch in my tricep that made my finger shake. It lasted for hours. I couldn’t sleep.

I’m in intensive therapy and on medication, but I can’t shake this. I don’t know why, but I simply cannot convince myself that It’s not something much worse.

4. This is not your problem though. I just want you to understand what drives people like me. It’s a gross and distorted fixation and fear. In this case, the fear is like a drug. The internet feeds this by offering constant discouragement and reassurance. The ups and downs. The endless questions. The infinite potential for what it could be or what it means.

For many of us, BFS is like a physical manifestation of fear. It comes to people (often) after extremely traumatic periods. A hyper-excitability of the nervous system that mimics other scarier things. These physical manifestations stand as a constant reminder of what could be. It’s analogous to having a deep feeling of worthlessness and trying to reconcile that issue through therapy etc, but every night you go to bed, someone whispers you’re worthless in your ear until you fall asleep.

I’m sorry if the things I’ve said were disrespectful.

 

[lgelb]

I'm glad you're getting help, and appreciate your perspectives. Also sorry to hear about your dad.

I will only point out that not all help is created equal or right for everyone, so you should feel free to shuffle the deck if what you have isn't working that well.

The Internet is certainly fuel for health anxiety, but ultimately everyone has a choice. Everyone here, as everywhere, has had to shake off an obsession, delusions, or illusion. Sometimes it does take help.

I hope in time you can replace that voice with one that whispers that you deserve a healthy happy life, and remember that one way to achieve that is through helping others.

Best,
Laurie

 

[iadevaia16]

You are the best of us.

"LOOKING DEEPER, WE COULD
SAY THAT THE REAL CAUSE OF
SUFFERING IS NOT BEING ABLE
TO TOLERATE UNCERTAINTY"

Poma Chodron