I have gone down the ALS/Parkinson's Rabbit Hole and can't get out mentally....

[mscard02]

I have never had health anxiety in my life, in fact i was extremely hard-headed when it came to seeing the doctor. I am a 31 year old, pretty healthy male whose last doctor visit was probably 10 years ago. This all changed when I had my son 4 months ago.

9 days ago, my wife and I were watching a show on netflix when i start to feel light-headed out of nowhere along with my pinky and middle finger twitching like crazy for 3 hours. I feel like I have had twitches before, but never in my fingers or to that extreme. I immediately opened google and searched (big mistake) and of course landed on ALS and Parkinson's. I started to freak out at the thought of having to leave my newborn son and wife behind and not having a chance to see my son grow up.
This past week I went to my primary care doctor. She did a bunch of blood work which all came back ok. Tuesday I felt awful so I went to the ER where they did an EKG, CAT scan, and some more blood work. All came back ok. Around this time i felt like my right forearm (the one with the twitching) felt swollen and tight. The twitching isn't nonstop, but it still happens every day.

Next, I went onto an ENT with the hope that my light hotheadedness was ear related. He said everything checked out and sent me to a neurologist.

I met with the neurologist this week and she told me I didn't have parkinson's or ALS because i was too young, this answer did not help at all as i know early onset can happen, although rare. She also found that my blood pressure drops upon standing. She gave me some compression socks and wants me to come back for an EMG in 6 weeks, but I can't mentally function like this for that long.

Sitting here today, 9 days later, i am still light-headed, my middle finger now twitches throughout the day, and my fingers feel slow even typing this. My forearm still feels extremely tight. I have also noticed twitches in my left shoulder and bicep, but not nearly as bad as my right middle finger. Today I feel like my lower calf muscles feel heavier to move and i am walking slower and I have had to force food down for the past week due to no appetite at all.

I burned through all my personal time last week and have to go back to work tomorrow, but I have no idea how i can possible get through it. I wake up at night and can't sleep, almost in tears because of the pure fear that I have right now. It is placing a huge burden on my wife, who along with our newborn son is at her breaking point. She will also now have to take me to and from work (45min-hour drive) every morning. My mother thankfully checks in and talks with me every day to help calm me down. I called my Dr and she put my on some hydroxyzine, but i just don't feel like it is helping.


I am a very analytical person, and always think through multiple strategies. I feel like no matter what, I am convinced i have one of these due to light-headedness, finger twitching, drop in blood pressure when standing, and forearm tightness.I am not sure how to get out of this rabbit hole since there is no definitive test to say yes/no you have this disease. I feel like i will be watching my symptoms and worrying about them getting worse for the rest of my life. I don't know how to make it stop! I am just not sure what to even do next as I am completely paralyzed by the fear?

[Carys]

Hiyer....


I saw that nobody had yet replied to you, so wanted to do so. It sounds to me like having the newborn in the family has put quite a bit of pressure on you, and you are clearly very panicked. You say that you have never felt anxious about your health but 'it all changed when you had your son 4 months ago'. Was the birth, the responsibility something that looking back on, could have triggered and anxiety response?


Lets look at some of the facts - you had a rather sudden change, watching a film and some odd light-headedness and twitching. I don't know if this was the first incident you had that concerned you, or others preceeeding it. However, ALS and Parkinsons don't just start with the flick of a switch like that. I know that the neuro gave you a pretty vague reason in that you 'aren't old enough' to have it, which of course is not a helpful reason at all, however I'm sure that wasn't all that he based the assessement on. He surely asked you questions and did various checks before pronouncing you didn't have either?


You have also had many other tests and checks done, which to this point have shown nothing. The orthostatic Hypertension I'm sure is concerning you, and you will of course (as I'm sure you've done your own research here ) know that it can be benign and something some people just have, or a symptom of a good many other conditions. Did the diagnosis of orthostatic hypertension come with any explanation of any sort, as to the cause, from the doctor?


I'll let you answer the points above first, before adding anything further. You wrote a lot to start with, and there is a lot to say back..... One thing though, you simply must eat and drink fluids, even not eating and drinking can make you llight-headed and dizzy!

[miggymoggy]

Hiya I wanted to reply too - and hopefully help you.
When I adopted my kids, my health anxiety went into overdrive.
I think there is something about the fact we are now responsible for other human beings and we are so terrified that we wont see them grow up. Also we are so happy having them, we almost think "oh typical, now I will be diagnosed with something awful and the whole dream will be ruined"
I went through this Honestly. It did get better.
I am in the middle of a HA crisis at the moment but that's 7 years after all that happened with my kids.
CBT is a wonder. Don't hesitate to PM me if I can help xxxx Lots of love xxxxx

[Fishmanpa]

READ THIS as often as you need to.

Positive thoughts

[stowaway207]

I've gone through this as well, particularly with forearm tightness and finger twitches. It's absolutely maddening and having HA makes everything magnify by a million. I've convinced myself probably 60 times in the last 8 months that I'm going to die from some neurological disease. I started going to see a therapist regularly and that's helped a significant amount. Whatever you do, try to get out of the rabbit hole. Almost everyone with health anxiety worries about diseases like ALS and Parkinsons, so you're definitely not alone.

Feel free to message me if you're having a particularly bad bout of this and we can talk through it as well.

[mscard02]

Hey everyone,

first off thank you so much for the responses. During the height of my anxiety, your post greatly helped more than you will ever know.! Just wanted to give a quick update of the symptoms.

Shortly after my wrist felt tight, i began to feel a burning sensation it it, as if i was on the final sets of a workout. A few days after, it moved to my bicep and a few days following that my tricep. Same burning sensation. I could also feel it lightly in my neck. These symptoms seem to kick in during the evening hours the most. They didn't feel tight like my wrist, but felt as if i had hit them pretty hard in the gym. My entire right arm just feels off.

The lightheaded feeling is still there, though not as strong as the start. It feels different than the initial onset the kicked this off, i really do feel like anxiety could be driving this part,

The middle finger, the scariest part to me, still twitches although i found that taking 400mg of ibuprofen, 3 times daily, has reduced the frequency. If i can use only my left arm for a day while staying on ibuprofen i have actually had a day or two of no twitching. This could also be a placebo effect, but either way the twitches in my middle finger still terrify me. However, this has also caused me to be terrified to use my right arm as I fear it will cause more twitching.

My sleeping has been absolutely awful. In the past, i rare could remember a dream that I had the previous night. At this point, i wake up every 30-45 min all night long and can remember every dream i was currently having. It is extremely odd.

I still haven't had my craving for food come back. It has been over 3 weeks. I no longer have to actually force the food down, but i could still go all day without eating. I have made sure to drink a lot more water at this point.

I had an MRI done which came back clean, orthopedic dr visit this wednesday, and an EMG scheduled 8 days from now. I am completely terrified of the EMG and what might be found and I know this week it is going to be extremely hard on my anxiety. I know anxiety can do some crazy things to your body, but the fact that this is all happening on only my right arm seems to be the driving force behind all of this and my fear of ALS. The dr. did put me on a small dose of xanax for this month till i can get through the testing. Although it has taken the edge off, i don't really believe it is doing anything.