View Full Version : Medical Student/Junior doctor - ALS.

20-03-13, 01:22
Hello everybody,
I have been a keen observer of self-help forums like this one for a while now but this is the first time I decided to post.
If you are reading this: Thank you.
I am a medical student / junior doctor on the verge of begining his professional career.
I only have my licensing exam left to take and am already on practical rotations.
The problem is: Fears of disease are consuming my thoughts.

I have recently begun a PhD in Amyotrophic lateral sclerosis research and it is absolutley wearing me out.
ALS is a disease that I would not wish on my worst enemy.
For those of you who do not know what ALS is, please do NOT! look it up now.
It is the ultimate nightmare for every hypochondriac.
It starts with unspecific symptoms (twitches and weakness) and inevitably leads to a terrifying death. No one knows where it comes from and what to do to treat it. It slowly eats up your muscles while you have to sit back clear-headed and watch yourself deteriorate.
Until you either die from respiratory failure or, if you decide to go on a ventilator, are locked into your body for the rest of your tube fed and ventilated life. This is the topic of my thesis and I spend every day thinking myself into how these people must feel.
I assume that it is taking its toll on me.

My problems have always been similar.
If I see a patient I feel his pain. I have always been the one person on rounds that comes back after everyone has moved on, to smile, sit and talk to my patients to make them understand that they are safe.
Having worked on a few ICU's during my education I understand how debilitating fear can be and I try to take it away whenever I can.
I know that what my colleagues tell me is true. That in order to be able to do this job you have to distance yourself. Build a wall around you. Do not let things get to you. The problem is that I am terribly bad in that. I only have to watch a movie I like and I start behaving like its protagonist for a while.
Especially if I can identify with him.
Suffering just makes me sad. And I want to alleviate it.
I have had this problem for a while now and had been fairly functional until recently.
I understand medicine to the modest extent one can after med school and am confident in treating diseases.
I can be professional and focused when needed and react to emergencies rationally and fast.
But my fears are starting to interfere with my focus.
Maybe because I am trying to wrap my mind around an incurable, deadly disease.
This is where I stand today:

I am 100 percent convinced that I have ALS. I have all its presenting symptoms. Literally every single one.
My hand is atrophying(losing muscle mass+feeling weak).
My muscles are twitching all over my body. And my legs are exhausted day and night. I even have shortness of breath.
I went to two neurologists: No.1 understood my problem, ran an EMG and concluded that I was healthy and anxious. According to him every medical student has to have ALS at least once. This calmed me down for a week.
When I noticed my hand was still weak and soft, I went to a second neurologist.
No.2 examined me, ran an EMG and diagnosed me with two pinched (ulnar) nerves and a slight loss of muscle mass in my right hand. He did not want to hear about my twitches. Good: The diagnosis is not deadly. Bad: It does not explain the twitching(fasciculations) and frankly does not correlate with the degree of muscle atrophy without strong sensory symptoms.
Also bad: There is a real sign now.

You might understand the dilemma I am in.
I research this disease and feel that I know it. My doctors could not reassure me well since I am one myself and their exams were not very thorough.
(Although I would have acted the same if I was them, since there is no reason to assume a young,
healthy looking man is suffering from the early stadium of a deadly disease instead of a common one)
Nevertheless my symptoms continue. They can be unspecific or not. Fasciculations alone are very unspecific. So is hand muscle atrophy. Togther though they are specific. Although they might stem from two completley unrelated conditions, they are both there! And they are very real!
Weighing these possibilities is the battle I am fighting with myself nearly 24/7.
Not a single day goes by that I do not examine my hands.
I manage to function for a while(hours) and get drawn back by twitches, weakness or just from looking at my hands.
It is absolutely driving me crazy. Also: I know how ambigous and unspecific medical diagnoses can be. How biased they are by patient history and symptoms. If I tell any doctor the symptoms I perceive, he has to assume a first diagnosis of ALS. And there is no test to rule it out. You can just find sth. else or wait and see. Now what do I do? I do not want to run from doctor to doctor requesting more and more specific tests, but I also do not want to live with this uncertainty. This is one of the major contradictions of this behaviour : To constantly seek reassurance in a world where nothing is certain and everything is made to change.
I have rationalized and theoretically overcome my fears a 1000 times.
Still I am dying. Again and again. Every single day.
My body is hurting. I can feel and see the symptoms!

I have denied, raged, bargained, rationalized, been depressed and have accepted my imminent death.
From a disease I might not even have. And even if I did I should not be that obsessed.
What souuld I do? Thank you.

Whoever battles with monsters
had better see that it does not turn him into a monster.

And if you gaze long into an abyss,
the abyss will gaze back into you.

20-03-13, 02:02
You have recently started a PhD in ALS, yes? What are the chances of you having what your PhD is on, not very high I'd imagine. Just trying to rationalize things. Surely you are spending so much time rsearching this subject that it has messed up your thoughts, the mind is very powerful. Can you think back to before you started your PhD, did you have symptoms then?

20-03-13, 03:22
Geez, now you've got me worried that I might have it too! You know what? I've been 100% convinced that I've had the following:
Ulcerative Colitis
Most autoimmune diseases
Liver Disease
Heart problems
Kidney problems

None of the above have ever been ruled out and I have many of the symptoms of all them.

What you need to ask yourself is this "Are my fears caused by having this disease or are they caused by irrational anxiety?" Because even if you have the disease, which is highly unlikely, it's the fear of the disease rather than the actual physical symptoms that are causing you the most distress right? IF you have the disease, which you probably don't, freaking yourself about it isn't going to change things, so either way, the best thing you can do for yourself is address your fears. Desperately seeking a diagnosis isn't going help you feel better. You could try doing health anxiety modules on this website and see if that makes you feel any better - it really helped me. http://www.cci.health.wa.gov.au/resources/infopax.cfm?Info_ID=53

20-03-13, 18:40
Hey Polly and Lilharry, thank you for your answers!
@Polly, I agree. Doing research on this subject really is messing up my mind. It is just difficult to have studied medicine for 6 years and then having to stand by and watch people die. You have to have strong nerves to work on a topic like this and not let it affect you. Which is much easier said than done. Most people do not like to be around death and hopelessness for a reason. Empathy is one of the key qualities of humanity.
Nevertheless it is difficult to say for me right now whether I have had these symptoms before. They are definitely getting worse. And paying attention to them isn't really helping...Do you have any disease worries?

---------- Post added at 19:40 ---------- Previous post was at 19:36 ----------

@Lilharry. Thank you for your answer and for your practical help! I am going to do some of these modules tonight.
You are 100 percent right. My fears definitely do not correlate with the severity of my physical symptoms.
But I find it hard to stop worrying.
How are you dealing with your anxiety?

20-03-13, 19:26
I remember going to the emergency doctor last year after what I felt was cold water running down the inside of my head and face when I got there and waited to see the doctor she was a lovely woman absouloutly lovely say with me felt my stomach and other things and I remember saying to her I wish I had studied to be a doctor so I could no for sure her words wasn't what I expected she said Vicky being a doctor as its down side as all the knowledge I have can do me harm I've suffered anxiety and depression being a doctor doesn't mean anything what I guess she was trying to say was were all human and we all have demons to fight at 1 point or other we will never no what destiny holds for us but how do we deal with the unknown that's a scary 1 x

20-03-13, 19:55
Maurice, have you come across BFS (Benign Fasciculation Syndrome) in your studies at all? This is a much more likely explanation for your twitches (an EMG has already ruled out ALS) and is often triggered by anxiety.

I feel your pain. My life was consumed by a fear of this illness for over a year and I twitched everywhere, it was horrible. After a course of CBT I eventually learned how to rationalise this fear, and the twitching and feelings of weekness gradually subsided, but I wouldn't wish it on anyone.

20-03-13, 20:01
Maurice - I have been going to counselling to help me deal with my anxiety. I still have physical symptoms but I'm able to cope better in general as I am addressing my fears. I still have bad moments - last night I had a bit of a melt down, but I definitely have more space in my head for rational thoughts than I did before. I just keep telling myself that my fears are thing that are causing me to get shaky and feel sick to my stomach and actually, they're not very helpful and can leave me alone. If you can separate the anxiety from the real symptoms it makes them less scary because anxiety itself can't hurt you. I think you will find that if you work through that module you will feel so much better and you will probably find that some of your symptoms will subside. I've also told myself that if I do get dignosed with some incurable illness, which is unlikely, that damn it, I'm going to make the most of my time left! Anxiety just isn't helpful whether or not you're sick.

20-03-13, 20:04
i will be honest with you working in the health care settings has problems. i worked with a person who had a stroke and i conviced myself that that i was going to have one too. i was worried about the big c because of another person. its dificult been in a health job and switching off from the illness etc.- it really eats you up.
to be honest i think you will make a great doctor as i take the time to talk to the patients etc, hospitals need more doctors that do that as it helps the patients not to worry.

it takes time to learn how not to transfer other peoples illness onto your self. iam looking at the cbt route to help change the way i think about this. there is a link on here that might help, i will try to find it.


20-03-13, 21:20
Yes, I would second the above. YOu are going to make a fabulous doctor because you will be sympethetic to people's fears and you will be able to help reassure them. We need more people like you :)

20-03-13, 22:53
Hope you're doing alright Maurice. Yes I have disease worries, currently MS has taken over my mind. I have headaches going on all the time, aches and pains, tingly feelings in my lower leg/calf area and it doesn't help that my sister has MS. I've had a a brain MRI and seen the Neuro but I know MS isn't easy to diagnose and does not always show up on an MRI so I think the're just too lazy to investigate further. So for now I have to try and convince myself that its all anxiety.

20-03-13, 23:26
Hi Maurice

I have been through the whole I have ALS thing just over 2 years ago.. I when as far as writing letters to my wife and kids to explain why I was not around to see them grow-up.
I first noticed that my calf muscle on my right leg was Twitching and it would not stop so started to look it up on the internet and found ALS/MND and read up on it and it scared the life out of me I was a wreck I could for see my death right in front of me.

Any that lead to me talking to people online who suffer from ALS and one of the most common questions they get asked in the forums they help run is "DO I HAVE ALS" I Notice My Muscle's Are Twitching.
And most suffers will reply that the muscle twitching in most cases is always late in the progress of also the twitch comes on as the muscle is dying and also that with ALS the twitching is not wide spread but is confined to one muscle group and then mostly radiates out to the next area.

So most of the time when people present with wide spread muscle twitching it is not indicative of ALS and other things must be ruled out.

Anyway I seen my neurologist and he said it was BFS and that I would just have to live with it.. That was 2 years ago and my twitching has now spread to both my calf muscles and they are in constant twitch mode 24/7 and sometimes painful (an other thing that points away from ALS is pain).

I still wonder what is the cause of this. But I think it has to be Anxiety related and I must come to terms with it.

Benign Fasciculation Syndrome can present like ALS even down to the Atrophy (but that can mainly just happen in one muscle group ie: a single hand and it will not spread).

You know the odds on having ALS are Really very slim. Don't go down the path I went I'm a grow man and I was in tears for months everyday searching for muscle loss and checking muscle tone and strength and doing home tests.

I even have a positive Palmomental reflex that scared the life out of me and still does but some things alone don't make a diagnosis.

Rest easy mate you have seen the best people and have been told no.

21-03-13, 00:02
Thank you all for your long and compassionate answers!
I cannot tell you how thankful I am that all you guys are here.
Anxiety can be such a monster. Especially if you have to face it alone. And
actually I can already see a slight progress :). I've already only spent half of the time I've spent yesterday examining my hands today. I still find it hard since I can see the difference in muscle mass and do feel weakness.
Nevertheless, I will try some of the online exercises you have reommended me and hope that it will get better. Just looking at this thread actually really calms me down!
To answer some of the specific questions you have asked.
@Darwin 73: Yes, I have indeed heard of BFS but am probably already to deep down the rabbit hole to consistently convince myself that it is causing all my symptoms.
@Polly81 : Fear of MS is an awful beast to tame. Still though, there is a lot of hope to find a cure in our lifetime.
@Lilharry and @mrsnobody Thank you for the links and the compliment! I am just taking a break from model 1 of the cci as I am writing this. I will download the cbt material too.
And thank you @xtremx. I know exactly how you feel! (And I have actually already thought through the whole letter writing idea(I decided to record videos thought :) ).
Hearing your story is reassuring and scary. It is truly impressive what our minds can do to our bodies! I am strong in almost all other aspects of my life.
But I guess worries find their way. I am still kind of a mess, but I hope it will get better soon. I'll check back here tomorrow. Assuming we will all still be alive! :D

21-03-13, 03:34
Is ALS the same as motor neurone disease? I'm not going to google it as you said not to ;-)
I think the chances of you having something you did your PHD on is so remote it's almost comical (not funny, though). The fact that you know so much about this has made you more aware of it.
If your brain tells you something often enough, it starts to believe it.

21-03-13, 09:44

free cbt programe i joined this one last night

03-06-13, 18:43
Yes it is and don't Google it, if we spend enough time reading about a disease we will surely get it, my Mum would not talk about Cancer as she was convinced if you don't talk about it you will never get it.
She sadly died of Lung Cancer because she tried to treat it like a person she didn't like, she ignored it.

04-06-13, 00:43
Yes it is and don't Google it, if we spend enough time reading about a disease we will surely get it, my Mum would not talk about Cancer as she was convinced if you don't talk about it you will never get it.
She sadly died of Lung Cancer because she tried to treat it like a person she didn't like, she ignored it.
You mean you will think you have it, not that you will actually get it surely? Because I have been thinking about lymphoma a lot! :huh: