Current Fear:ALS

[emmegee]

Hi All-

Thanks in advance for taking the time to read this. I'm a newbie to this forum and have suffered from HA my entire life. I'm a 45 year old single mom with two teens and am a high school teacher. My HA seems to have a three year cycle, each time a different disease, symptom etc that I fixate. I slowly takes over my life over the course of a few weeks until I am in the thralls of a complete "anxiety state" that takes months to come down from.

In the past year, I have heard the story of two "friends of a friend" that have been diagnosed with ALS. I know a lot about it because I hyperfocus and research diseases I hear about. Last year, a colleague started showing signs of bulbar ALS. I feared for her but hoped it was something else. I have watched her decline over the past year and a few weeks ago it was announced to our staff that she had a diagnosis of ALS and was not coming back to work. I was immediately very anxious, couldn't stop thinking about it. Made me a bit depressed but could function. That lasted for a week or so and then I started feeling weakness in my left arm. And my thumb and index finger feel "weak" or just strange. (This is perceived weakness, not clinical weakness). This freaked me out. This arm/hand/finger fatigue has lasted for a couple weeks now and I am in full-blown anxiety mode. I also have a very slight dull ache in the whole left arm. I saw my pcp and neurologist (not mentioning ALS but just the arm weakness finger fatigue/loss of dexterity thing.) Both said I was fine. This left arm/hand/finger issue has persisted.

I also made an appt with my therapist and psychiatrist. Started taking klonipin and just started zoloft which I have both used in the past. I have been med-free until this week.

Six years ago I had a spine MRI and it showed mild/moderate disc degeneration, spinal stenosis, disc herniation and foraminal narrowing at C3-C6. No nerve impingement was shown. I mentioned that maybe this might be giving me problems now, and my neuro said he didn't think so. I also mentioned that maybe anxiety or stress could be affecting those discs and the nerves around them. He didn't think so. I also have a lot of left hand falling asleep episodes and have thought for years that my circulation is not great. I thought maybe some radial nerve impingement somewhere (wrist/elbow). Neuro doesnt think so, but will do NCV and EMG test to be sure in a couple weeks. The feelings I'm having in the left hand and arm are overall slight and when I get my mind off it I don't notice it much. But it has persisted. My irrational anxiety self has convinced myself that I have the early stages of ALS (before clinical weakness begins). I know it is crazy, but I just can't seem to shake it and it comes back and invades my mind most of the day. Its to the point that I can't really enjoy anything and am pretty unhappy all the time. Going through the motions. Getting through the day. I'm taking the klonopin sporadically but thinking I should do a maintenance/preventative dose until I get through this. (Im afraid of getting addicted.)

Any thoughts are appreciated. I have read many of the posts/stickies on MS/ALS fears and they are great...can't seem to get myself out of this rabbit hole though.

[Fishmanpa]

It's interesting you call the ALS fear the "rabbit hole" as I've referred to it that way myself and yes, I've seen many with this fear on the boards and it's a pretty deep hole. One tends to get stuck and it's very difficult to dig out.

That being said, there are a lot of positives in your post.



I am in the thralls of a complete "anxiety state" that takes months to come down from.

That alone speaks volumes as you're totally aware this is your anxiety talking ;)



I saw my pcp and neurologist (not mentioning ALS but just the arm weakness finger fatigue/loss of dexterity thing.) Both said I was fine.

That along with other medical tests and professionals ruling things out is the best reassurance you can get!


I also made an appt with my therapist and psychiatrist. Started taking klonipin and just started zoloft which I have both used in the past. I have been med-free until this week.

Again, you're totally aware of what's happening and are taking pro-active steps to stop it in it's tracks. That's light years ahead of many. I think if you continue to take those proactive steps, allow some time for the meds to kick in things will calm down. The additional mental stress you've put yourself under due to the circumstances with your work colleague have triggered your anxiety and you're aware of it. Sounds to me you have the tools to dig yourself out of that rabbit hole to me :)

Positive thoughts

[emmegee]

Thanks a bunch for your response... yes I've been through this before, but I swear it gets harder every time... and each time it seems more "real".

[QUOTE=Fishmanpa;1620279]It's interesting you call the ALS fear the "rabbit hole" as I've referred to it that way myself and yes, I've seen many with this fear on the boards and it's a pretty deep hole. One tends to get stuck and it's very difficult to dig out.

I absolutely can't take credit for the "rabbit hole" analogy... I have read that phrase here and on AZ forum and it really is a good analogy! I think I have caught a few of your responses to other posts and you are very insightful and helpful. :)

[Fishmanpa]

Thanks :) Again, I just want to offer encouragement as I see the positives in your post that I don't see in others. There are no easy answers and you know most of them anyway as you've been to more than one rodeo ;)

Distraction, eat right, exercise etc. The list goes on. And also, expect a slight bump in your anxiety as the meds kick in but you know that too.

Positive thoughts

[LE]

I just wanted to comment to say I am going through similar and also on the ALS 'train'.

I started off worrying about a brain tumour 3 weeks ago. Was utterly convinced. I mean I had so many symptoms! Anyway got an MRI and that ruled out the brain tumour. But I still had symptoms so I searched the Internet trying to fine what it could be and then came up with various blood clot types that can't easily be picked up on an MRI. I saw a neurologist 2 weeks ago who examined me and said he could not find anything neurologically wrong with me.

But of course I've not got more symptoms. Whilst many of the original ones have disappeared! So now I've noticed my left foot and calf is thinner than my right! Atrophy right. So I've measured various points and varies by a 1/2cm. Gp said this is normal variation. I also have been walking on toes and heels etc and the left foot gets sore after doing these. So like you I'm thinking Ive noticed it before true weakness. I've also developed clearing my throat of mucus constantly and before I speak. I even convinced my self a few days ago that I couldn't swallow food so never ate in two days. I've been prescribed diazipam to calm me down and managed to eat bits of a big meat joint earlier. Eating is still making me anxious because like that I'm monitoring constantly and also monitoring my speech for sounds. Been waking up out sleep feeling like not breathing . It's relentless.

So I'm going back to the neuro on tue. I've have health anxiety for a few years now too and been under control for last 2 years but I've just had a baby (my 3rd) and it's all started since then. I'm 36.

For what I have seen in here and on the ALS forum which I've looked at but not posted or anything they seem pretty certain that it's not feelings you notice it's mostly one day you gonabout your business as usual and suddenly you fail to do something you have always done. There was also a post on here from a girl who had a counsin with it and she said one day he tripped and then the next day he could put weight on his toes ever again.

What I'm finding with me is that the other day I felt good was getting stuck but then tonight it wasn't. Sometimes I think I say my speech is funny (but no one else does and apparently that's is what normally happens people ask if you are drunk it's that noticeable), then next thing it sounds fine. To be honest I am still worried sick and believe that 'this time' this is it. Just as you say it gets just as hard each time. It's difficult to rationalise.

Here to talk....x

[Josh1234]

There is no "early stages." The average ALS story is "I tripped several times today, and I have no clue why." Or "Im having serious trouble opening this bottle of water." It's not sensations or feelings. ALS is a disease of the motor neurons, not sensory.

[swajj]

I more or less said that Josh...more than once. Your wasting your time trying to compete with Dr Google. lol

[emmegee]

There is no "early stages." The average ALS story is "I tripped several times today, and I have no clue why." Or "Im having serious trouble opening this bottle of water." It's not sensations or feelings. ALS is a disease of the motor neurons, not sensory.

Thanks for your response Josh. In the 50 % of time my mind is thinking rationally, those are the facts I go to. It's the irrational anxiety thoughts that are plaguing me right now. I just don't understand why I can't just think rationally all the time! So frustrating. :)

---------- Post added at 06:32 ---------- Previous post was at 06:27 ----------


I more or less said that Josh...more than once. Your wasting your time trying to compete with Dr Google. lol

I sincerely apologize if I have wasted your time. I posted this on an anxiety forum since I recognize this is anxiety. I have found this forum very helpful and appreciate how many others have had good advice and truly understand how anxiety works. :)

[swajj]

My response wasn't directed at you. It was directed at LE.

[LE]

My response wasn't directed at you. It was directed at LE.

I'm not sure why it was directed at me either?


I appreciate you are exasperated with my fears but it is a major fear I'm having. So are we saying that if you can perform the strength tests but then that leaves your foot sore for the next day then that is not ALS? Because that's what's happening to me. I am performing the strength tests fine in both feet and legs but afterwards my foot/ankle is quite sore. Usually after rest it's not as sore. I do not work out whatsoever and I've just had a baby so have extra weight on me.

Most people are here because they are genuinely frightened and it is affecting their daily life. I'm not here to try and wynd you up swajj I'm just having a terrible time of it. Sorry.

[Fishmanpa]

So are we saying that if you can perform the strength tests but then that leaves your foot sore for the next day then that is not ALS? Because that's what's happening to me. I am performing the strength tests fine in both feet and legs but afterwards my foot/ankle is quite sore. Usually after rest it's not as sore. I do not work out whatsoever and I've just had a baby so have extra weight on me.

I saw someone in a store doing these weird things like standing on one foot, going up on the toes etc. If it weren't for this site and those that do all the HA related self testing for ALS and the like, I just would have thought the person was off kilter....

Of course if you're doing all these weird self testing things you're going to be sore. How many people in real life go around doing this not only once but constantly?

Like I said, the ALS rabbit hole is deep and narrow and it's hard to get out once you're stuck. Hopefully you can.

Positive thoughts

[emmegee]

Well, I've had a terrible day...let the fear dominate my thoughts and got me into full panic mode despite taking klonopin this a.m.

Current negative thought process:
1. Read that 50-60% of nerve death occurs before clinical weakness sets in.
2. This odd feeling in my fingers/arm is that.
3. Read "hindsight" symptoms... that is PALS that went to the dr when clinical weakness set in but in hindsight...remembered subtle symptoms up to a year before that they now attribute to ALS.


I try to counter that with:
1. what are the chances I have ALS right after a colleague is diagnosed
2. I have heath anxiety and I "do this"
3. Anything I feel as odd must be sensory and I would not actually "feel" anything with motor neuron death.

If anyone has any positive vibes or words of encouragement send them my way.

I'm just having a tough day.

[Kathryn313]

Its great that you can rationalise. The fact that you are in a cycle of listing the HA voice and the rational voice is a good thing.

My aunt has recently being diagnosed with ALS (age 73), nothing you describe appears similar to her condition.