Anxious about symptoms

[reanne2489]

Hi all,

I am here because, naturally, I am worried I might be exhibiting symptoms of ALS.

I know it would be rare to have it at my age [25 years] and my gender [female], however, it does happen.

I haven't been exhibiting symptoms, knowingly, for very long. I have had a few leg cramps over the past 2 months [maybe 4 cramps- these are unusual for me if I am not exercising. 2 recently were after exercising/ lots of walking however].

I have been twitching/ spasming like crazy. Now I would occasionally, like everyone else, get spasms. But for the past week or so, my calves twitch non stop, my thighs, my buttocks, my arms, my stomach and my back. I also have aches and pains down my arms into my wrists and hands. My legs also experience bouts of aches and pains since July.

I have no discernable weakness. My doctor made me do some basic functional tests of reflexes and muscle strength- nothing strenuous and has suggested exercising. I can still lift the weights etc I used to. My cardio level isn't great, but I haven't exercised in like 2 years so that's to be expected.

I just get very nervous when I read that fasciculations are people's first signs.

Does weakness usually accompany the fasciculations? Or would it take long after to show? I have not noticed any loss of muscle. [Other than typical female signs of not working out on one's bottom, which again is probably natural]

I have found myself with chest pain, even at rest, and a feeling like my whole body is pulsing with my heart. I wonder if this is anxiety at these symptoms which may be further perpetuating them.

I would be so grateful for your insight and advice as I am a UK expat working in Beijing, and dealing with something like this far away from family and friends is very hard.

Thank you so much.
Best wishes.
Andrea

 

[MaxEidswick]

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[Atsugi]

Andrea, you have anxiety, not ALS.

From the top of your post to the bottom:
- Cramps are when muscles contract tightly. In ALS, muscles don't contract at all.
- Twitches are not diagnostic of anything, because they occur so often in everybody all the time.
- Aches and pains point away from ALS. A muscle affected by ALS won't hurt, it simply won't lift. It's limp.
- Your twitches are all over--classic anxiety. In ALS, twitches are localized to the affected muscle.
- Muscle FAILURE is the key feature of ALS. You don't complain of it. ALS muscles don't contract at all.
- Cardio has nothing to do with beginning ALS. My wife had OUTSTANDING cardio when she was diagnosed.
- I don't know why fasciculations are listed as a first sign of ALS. Serious studies says they are NOT a first sign.
- Chest pain and "pulsing" palpitations are consistent with anxiety, but have nothing to do with ALS.

So that's good news for you. Enjoy Beijing.

 

[MaxEidswick]

>Enjoy Beijing.

just don't inhale

Also, get a Tu Er Ye, rabbit from the moon -- He dresses like a human and cures people's diseases. Mine came from Beijing.

 

[reanne2489]

Thank you so much for your responses. It is wonderful to be able to share concerns and advice in such a caring community as this. I wish everyone all the very best. Also, awareness of ALS has come to China, and the students at the High School I teach at are working on projects for their diplomas that help increase awareness and raise money for charities, and they have selected ALS- they are doing it as a proper long running project outside the "ice bucket" viral challenge.

 

[reanne2489]

I just wanted to follow up. I saw my doctor again today about general chest pains accompanying/ perhaps causing my twitching. I have no palpitations, but a very low heart rate, and it may be shock exercise is making it work harder. I don't know.

I don't have any problems with vitamin deficiencies or thyroid problems.

I have slept somewhat better. I still get the odd twitche/spasm in my arms, back and stomach, but it seems my calves are the main culprits with the left calve going crazy and feeling somewhat like it wants to cramp but isn't quite there, and no amount of stretching is relieving it.

Would these still be worrying symptoms? As, I wonder, if someone exhibiting early ALS symptoms might cause other twitches through anxiety, but still have localised fasciculations at the site of the problem.

Thank you for all your advice

 

[Dusty7]

Atsugi said, "- Twitches are not diagnostic of anything, because they occur so often in everybody all the time.
- Your twitches are all over--classic anxiety. In ALS, twitches are localized to the affected muscle."

So now you seem to be arguing that you have 2 causes of twitches--(1) all over the body from anxiety, but (2) localized from ALS, and now matching Atsugi's criterion. So even though, as Atsugi pointed out, you do not have ALS signs or symptoms, you continue to argue that you might have ALS. Wanting o have ALS is a psychological disorder that we cannot help you with here.

All you have is twitching and that is very very common, frequently due to anxiety, Rx meds, stress, c affeine, fatigue, etc. Fascics are not a first sign of ALS.

 

[skipper66]

You don't have ALS but I would suggest you increase your fluid intake of water or gatorade even. You sound like you might be dehydrated a little and if you drink caffeine cut it down drastically. Good luck to you. Please learn relaxation techniques and staying away from this site because we've answered your questions and you don't have ALS so there isn't anything more we can do to help you. If you feel you have anxiety talk to a psychiatrist. There is nothing to be ashamed about in asking for help for anxiety or stress. Now please log off and enjoy your life and rejoice that you don't have this horrid disease.

 

[reanne2489]

Symptoms Changes

Hi all,

So sorry to bother everyone again, but I have been losing crazy amounts of sleep and work hours to this, and had a small break down in the shower this evening.

I posted before about having body wide twitching, with some pain in the arms and legs.

I have since grappled with the fact that my body wide twitching is probably anxiety about the twitching and spasming which started in my left calf almost 2 weeks ago.

As such, the body wide twitching has calmed somewhat, I just feel shaky on my feet and in my arms sometimes.

My main concern that I've noticed is my twitching/spasming of my left calf never abates, and i was feeling the muscle tone in it last night. It feels to me like my good leg has more muscle/ fat around the bone, also there is a definite thinner appearance between my knees.

If I stand with my legs together my left knee curves in, whereas my right knee is wider and goes straight down. I know I have only been having symptoms for a short period of time, but could muscle wasting happen so quickly?

I have not experienced any noticeable weakness between my legs, such as a foot drop etc. But the doctor did note "brisk reflexes" during my physical, but there was no clonus.

I am concerned because I believe I saw on this forum a number of ALS patients say they had fasciculations before atrophy. I have read that most ALS patients will not have fasciculations until after weakness/ muscle wasting has started, and usually these early fasciculations are painless/ unnoticeable unless pointed out to the individual.

I am naturally very anxious because my sleep is being impaired, and with the symptoms being in one limb, with this thin knee appearance [i am not sure how symmetrical our legs should be or how quickly muscle wasting would happen] I am worried it is either ALS or PLS.

Any advice would be greatly received. I am going to see my Doc today to ask about the appearance of my legs. I am being referred for an MRI shortly.

Also any sage words on coping mechanisms in the mean time would also be well received. I am a huge worrier about health in general, and being so far away from friends and family in an unfamiliar country makes dealing with this even harder.

Take care everyone.

 

[MaxEidswick]

>Also any sage words on coping mechanisms in the mean time would also be well received. I am a huge worrier about health in general, and being so far away from friends and family in an unfamiliar country makes dealing with this even harder.

------

Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum.

You asked, we answered, so please move on.

If you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


-----
Max
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

 

[reanne2489]

Symptom Development

Hi again,

I am so sorry if I seem like an anxious pest.

I have been in and out of seeing my two doctors like a yo yo. I have a lumbar MRI scheduled next Monday, and ultrasound of my calves this week and the doctors are looking into where to send me for an EMG as apparently there are few places specialising in neurology in Beijing.

As I said before, when I first noticed the twitching and jerking in my leg my whole body suddenly seemed to break out in twitches. Ofcourse I still get some of these twitches, but with now having a course of valium and the past 2 weeks to calm down slightly, these full body twitches are much less frequent.

I am now hoping you might be able to assist with your knowledge about onset of symptoms via the calves. My first trigger was the twitching in my left calf. It is now always constant. My right calf also twitches but not as persistently or as strongly as the left. Also, over the past 2 weeks of having these symptoms, twice my right leg has felt like it was on the verge of a full blown cramp which would not ease with stretching and lasted for several days.

Last night for example, over dinner, I could feel my left leg beginning to tense into a cramp like state, and when going to bed both legs felt that way.

I woke up with them still feeling this tense cramp like sensation.

I know as many of you with a great deal of experience have said, that ALS is about failing and not feeling. I can still do everything normally. I sometimes feel shaky in doing so but not weak.

My question is, can you get these symptoms of constant twitching and cramping before weakness emerges? Also are there any other conditions you might be aware of which I should enquire about from my doctor for testing if it seems like it isn't ALS?

Thank you for everything.

 

[Nikki J]

Kindly stop posting new threads. You are asked in the sticky ( did you read it?) to post only on one thread this is the second time a mod has had to combine threads which is several steps and remember we are PALS

 

[Dusty7]

When Valium (diazepam) makes the twitching calm, lessen or go away, you pretty much have proof positive the cause was anxiety. Valium is not a treatment for ALS... well, maybe for CALS but not for PALS.

 

[reanne2489]

Dear Dusty,

That's what the doctor is hopeful of. He was quite worried about my anxiety levels in general, irregardless of what my diagnosis should eventually be.

I think what worries me is that whilst the full body twitching is lessened, the hotspot of my left calf, and to a lesser extent, my right calf, are still twitching 24/7, rapidly and with increased sensation of cramp.

 

[Mediasmart]

This is groundhog day. Stop.