Another twitcher worried about ALS :(

[callmeJ]

The twitches will not go away until your mind releases the fear. I went through this 3 years ago. After I read about ALS and was worried about it I felt a twitch in my leg. Not long after that I was having them all over. This sent me into a major episode. I went to the doctor and I was prescribed Paxil and clonozepam to help me sleep. I instantly was feeling better yet my mind still had ALS on it. Basically I continued twitching just not as bad while on the Paxil. I just wasn’t able to freak out about it or be scared. Finally after months went by I was becoming less and less preoccupied with it. Once the fear was gone the twitching eventually subsided completely but it took time.

[Dentalmaniac]

Just came back from my doctors and my level of anxiety has gone through the roof! Instead of giving me reassurance he said well your twitches are all throughout the body so I can’t say ifs a pinched nerve which means we have to rule things out. He did some strength tests only on my arms and said well your arms are equally strong. We may have do a brain MRI and then also refer you to a neurologist. He asked me if I knew what he was trying to rule out and if I had googled my symptoms and I lied and said no, not sure why. Then he went on to say let’s test your electrolytes and let’s go from there. So here I am really scared more than ever! I had gone thinking he’ll give me reassurance and say body wide twitching is very common and can be due to stress but he did no such thing:(

[Fishmanpa]

He knows full well that you know and you Googled IMO, he's practicing CYA medicine. That's the sign of a good doctor and let's be honest, if he had told you it was anxiety, you'd be posting that he must have missed something. I see it many times here. HA is a damned if you do, damned if you don't illness.

Positive thoughts

[Dentalmaniac]

I sure do hope that he was practicing CYA. If not, I would say he’s definitely made me much more anxious than I was going in :( he did not mention bfs at all which I thought he would bring up :(

---------- Post added at 04:52 ---------- Previous post was at 03:15 ----------

I really appreciate everyone being so patient and so reassuring to me on this forum. Thought I would list out my symptoms and their progression here:
1. Jan of this year while brooming in my mom’s house felt like my left arm got extremely tired. I rested and it got better. I usually don’t do any physical work.
2. Feb of this year, heard about three people; two distant acquaintances, one family friend who’ve been diagnosed by ALS
3. Feb my left elbow twitched for a day or so and so I googled and saw for some the first symptom of ALS may be a twitch. Didn’t think much of it as soon after my right elbow twitched a couple of times and that was that
4. Mid march, my daughter saw me walking towards her from a far and she asked me if I was limping. I said, no nothing hurts maybe you feel that way because I was walking fast and my feet were hurting in new shoes so maybe I was walking weird.
5. Also in march, I climbed up four flight of stairs at work and felt my left leg got really tired fast, so from that day on I started climbing stairs at work more regularly for a few weeks and seemed like my leg would not tire as fast as that first day. Maybe now I wasn’t climbing as fast.
6. End of march a couple of nights in a row I woke up because the back of my shoulder would twitch. That morning I was telling myself not too google but I ended up doing it and bam….there it was ALS. Thought to myself sure now I’m going to twitch all over and sure enough within a couple of hours I had a few twitches here and there and everything is history
7. For the last two and a half months now I’ve been twitching everywhere.
8. I read some more (a lot more) about ALS and started doing strength tests. Sure enough my left arm seemed much weeker than my right (I’m right handed). Decided to do everything from now on with my left hand. I think I’ve built more strength in it as it feels stronger than it was when I started doing strength tests
9. A month ago, my husband pointed out that he could see my chin underneath my lip twitching. I looked at the mirror and sure enough there it was. This was a twitch I had not even felt. Did more googling on ALS and sure enough found bulbar onset.
10. Next comes on slurring. For the last one week, I’ve felt like I can’t say certain words fast enough. I feel like my gums are tight. Almost as if I’ve gotten work done on my teeth
So went to the doctor today hoping he would reassure me and he says well, because your twitching is so non specific as in happens randomly everywhere I can’t say it’s because of a pinched nerve, so in this case we’ll have to do tests to rule things out….goes on to ask me if I’ve googled. I say no (not sure why). Asks me if I feel week or pain in my legs, I say no (even though thinking in my head, I do feel pain in my legs when I get up after a while). He does a few strength tests on my arms and tells me wooo you’re strong when I squeezed his fingers and then makes a comment that strength in my arms seems equal. He recommended brain MRI and that’s his way of ruling things out and he mentioned also I will recommend you see a neurologist. At that point my husband pointed out don’t you want to test her electrolytes and he said yes, we can do some blood tests to see if there’s any deficiency. Needless to say, I’m thinking the doctor’s thinking what I’m fearing all along!!!! Fishmanpa thanks for your reassurance that you think he’s catering to my health anxiety and being a good doctor. I’m hoping beyond hope that is the case!

[Kingdawson]

I sure do hope that he was practicing CYA. If not, I would say he’s definitely made me much more anxious than I was going in :( he did not mention bfs at all which I thought he would bring up :(

---------- Post added at 04:52 ---------- Previous post was at 03:15 ----------

I really appreciate everyone being so patient and so reassuring to me on this forum. Thought I would list out my symptoms and their progression here:
1. Jan of this year while brooming in my mom’s house felt like my left arm got extremely tired. I rested and it got better. I usually don’t do any physical work.
2. Feb of this year, heard about three people; two distant acquaintances, one family friend who’ve been diagnosed by ALS
3. Feb my left elbow twitched for a day or so and so I googled and saw for some the first symptom of ALS may be a twitch. Didn’t think much of it as soon after my right elbow twitched a couple of times and that was that
4. Mid march, my daughter saw me walking towards her from a far and she asked me if I was limping. I said, no nothing hurts maybe you feel that way because I was walking fast and my feet were hurting in new shoes so maybe I was walking weird.
5. Also in march, I climbed up four flight of stairs at work and felt my left leg got really tired fast, so from that day on I started climbing stairs at work more regularly for a few weeks and seemed like my leg would not tire as fast as that first day. Maybe now I wasn’t climbing as fast.
6. End of march a couple of nights in a row I woke up because the back of my shoulder would twitch. That morning I was telling myself not too google but I ended up doing it and bam….there it was ALS. Thought to myself sure now I’m going to twitch all over and sure enough within a couple of hours I had a few twitches here and there and everything is history
7. For the last two and a half months now I’ve been twitching everywhere.
8. I read some more (a lot more) about ALS and started doing strength tests. Sure enough my left arm seemed much weeker than my right (I’m right handed). Decided to do everything from now on with my left hand. I think I’ve built more strength in it as it feels stronger than it was when I started doing strength tests
9. A month ago, my husband pointed out that he could see my chin underneath my lip twitching. I looked at the mirror and sure enough there it was. This was a twitch I had not even felt. Did more googling on ALS and sure enough found bulbar onset.
10. Next comes on slurring. For the last one week, I’ve felt like I can’t say certain words fast enough. I feel like my gums are tight. Almost as if I’ve gotten work done on my teeth
So went to the doctor today hoping he would reassure me and he says well, because your twitching is so non specific as in happens randomly everywhere I can’t say it’s because of a pinched nerve, so in this case we’ll have to do tests to rule things out….goes on to ask me if I’ve googled. I say no (not sure why). Asks me if I feel week or pain in my legs, I say no (even though thinking in my head, I do feel pain in my legs when I get up after a while). He does a few strength tests on my arms and tells me wooo you’re strong when I squeezed his fingers and then makes a comment that strength in my arms seems equal. He recommended brain MRI and that’s his way of ruling things out and he mentioned also I will recommend you see a neurologist. At that point my husband pointed out don’t you want to test her electrolytes and he said yes, we can do some blood tests to see if there’s any deficiency. Needless to say, I’m thinking the doctor’s thinking what I’m fearing all along!!!! Fishmanpa thanks for your reassurance that you think he’s catering to my health anxiety and being a good doctor. I’m hoping beyond hope that is the case!

I think you're over thinking things to be honest. Why do you assume the doctor is referring to ALS? A brain MRI is not even the standard test for ALS so he is obviously not even concerned about that (the strength test ruled that out).

The questions he has asked makes me think he is trying to rule out MS not ALS(which probably isn't even in his radar).

---------- Post added at 09:43 ---------- Previous post was at 08:51 ----------

Btw you have been twitching for 3 months and the doc has reassured you that you have no weakness. When are you going to call it quits and accept you do not have ALS?

[Dentalmaniac]

Update....was feeling much better mentally yesterday but then got report back from my doctor that all of my blood tests/electrolytes came back normal so he wants me to see a neurologist:( back to being panicked and stressed!!!

[Kingdawson]

Update....was feeling much better mentally yesterday but then got report back from my doctor that all of my blood tests/electrolytes came back normal so he wants me to see a neurologist:( back to being panicked and stressed!!!

Do you understand that the doctor suggesting an MRI scan pretty much confirms he doesn't even suspect AlS? And your strength test ruled that out? I mean do you get that??

[Dentalmaniac]

Hi Kingdawson, yes that gives me reassurance and hope. Thank you for being the voice of sanity and logical reasoning

[hope_girl]

What about not going to the neurologist? I mean - if it's ALS (which is clearly is not), there is no treatment anyway! Your Dr. is covering their A$$. They all do it. It's basic American healthcare. Loads of unnecessary tests. I've had plenty.



I've been twitching since Feb. By this point I would have weakness if I had ALS. I don't. I never made an appointment with the Dr. because of course they always send you on to a specialist when they don't have clear answers. But I reasoned with myself that it would make no sense to rush off to the Dr. because unlike cancer where you hope to catch it early, it doesn't matter with ALS. There's nothing you can do. Catching it early literally does nothing.



So instead, I have used these past few months to focus on my therapy. I definitely ran to my therapist with it and it has helped me SO MUCH. I have made friends with my anxiety this time. I knew there would be no quick fix. Running to the Dr. never REALLY eases my mind - what if they missed something?! Having unnecessary tests surely has never done anything but cause MORE anxiety, which fuels MORE anxiety symptoms and keeps the snowball growing. This time I decided to stay put and stay away from it all. It seemed like the perfect setting for me to work with my health anxiety on my own without the (ritualistic behavior) of running to the doctor.


So far, so good. I've gained so many great techniques and understandings because I've taken advantage of this time. That's not to say I haven't suffered because I have. But I've also made this my "frienemy" if you will. I've been able to learn so much from it that I wouldn't have learned had I continued in the same pattern as before (run to Dr., tests or what have you, find out it's nothing... move on to next thing!)


There's no way you have ALS. But you do have anxiety. Focus on that and you will get better. My twitching isn't scaring me anymore thanks to the therapy I've been receiving. It is not totally gone but it's diminished and I'm accomplishing so much in terms of anxiety.

[HelloPanda23]

What about not going to the neurologist? I mean - if it's ALS (which is clearly is not), there is no treatment anyway! Your Dr. is covering their A$$. They all do it. It's basic American healthcare. Loads of unnecessary tests. I've had plenty.



I've been twitching since Feb. By this point I would have weakness if I had ALS. I don't. I never made an appointment with the Dr. because of course they always send you on to a specialist when they don't have clear answers. But I reasoned with myself that it would make no sense to rush off to the Dr. because unlike cancer where you hope to catch it early, it doesn't matter with ALS. There's nothing you can do. Catching it early literally does nothing.



So instead, I have used these past few months to focus on my therapy. I definitely ran to my therapist with it and it has helped me SO MUCH. I have made friends with my anxiety this time. I knew there would be no quick fix. Running to the Dr. never REALLY eases my mind - what if they missed something?! Having unnecessary tests surely has never done anything but cause MORE anxiety, which fuels MORE anxiety symptoms and keeps the snowball growing. This time I decided to stay put and stay away from it all. It seemed like the perfect setting for me to work with my health anxiety on my own without the (ritualistic behavior) of running to the doctor.


So far, so good. I've gained so many great techniques and understandings because I've taken advantage of this time. That's not to say I haven't suffered because I have. But I've also made this my "frienemy" if you will. I've been able to learn so much from it that I wouldn't have learned had I continued in the same pattern as before (run to Dr., tests or what have you, find out it's nothing... move on to next thing!)


There's no way you have ALS. But you do have anxiety. Focus on that and you will get better. My twitching isn't scaring me anymore thanks to the therapy I've been receiving. It is not totally gone but it's diminished and I'm accomplishing so much in terms of anxiety.

Had the fear for 2 months, combined with many aches and pains. No twitches though. I considered going to a dcotor, but never did because I realized it'd be a waste of money and time. Just as you said, there's no reason to check and see if i have ALS or not because if I do, it'd make no difference anyway.