View Full Version : Als fear
Hi
My name is Shaun . Here is my story. In the summer of 2015 I started to have an eye twitch and pain in the eye . I went to an opthalmologist who did various tests and said all was fine . Just dry eyes. I then developed a twitch in my leg hamstring and some pain in shin and ankle. I noticed my voice was hoarse. I also had some face and continued eye twitching. I noticed my left thumb pad was less meaty then the right. I had some random twitches in bicep and back. In March 2016 I saw a Neuro who did a nerve study and emg on the right side and said I was normal just anxiety. He asked what I feared I said Als. I felt better for a couple of months twitching was reduced except I noticed some in tongue but they went away in a few weeks, but the ankle calf pain remained . I developed a chronic headache in June 2016 and had an MRI was normal. Then in.November I had a bad cold , I developed twitching again all over with some cramps in legs and muscle pain burning arms ribs stomach. I also noticed phlegm and throat clearing and voice seemed hoarse again .I saw the neuro again Feb 2017 he did another emg on left side this time because he said he did right side last time. Again he said normal. I was happy , but a few days later tongue twitching returned I looked at tongue in the mirror and stuck it out continuously to examine it and move it . My tongue and jaw and face muscles spasm and are really sore and tight . It is difficult to talk and it seems words are not coming out right . I hope it's just tmj and not als .My upper back hurts and sometimes twitches , my legs are a lot better some burning tho . I am.twitching in thumb area right hand. My right hand feels weak and clumsy and not coordinated . I feel so scared I have als and I will die and leave my three kids and wife . Btw I am male 37. I feel like going to Neuro again to test my jaw tongue speech. I am.hoping it is tmj and not als. My family has been supportive but I don't know what to do I am terrified I don't sleep well I am anxious depressed I keep thinking I will be dead in a few months .These twitches in hand tongue body keep scaring me . I have Googled my symptoms constantly looking for help but it keeps making me feel worse .I am worried about my speech and hand . Someone please advise what to do.
Thank you for listening
snowghost57
04-03-17, 17:47
Do yourself a favor and don't google your symptoms. The internet will just scare you more. I know I've done it. My own doctor told me to stay off the net. Listen to your doctors. What you have is stinkin thinkin, that's what my therapist calls it. Focus on what is in front of you and do let your mind take off. I know easier said then done.
How do I overcome my fears? How do the symptoms stop. Do I need to see a psychiatrist ? Is my mind creating my feared illness. Help
Kathryn313
04-03-17, 17:52
You first had these symptoms in July 2015. 18 months ago. If those were reflective of early onset ALS, wouldn't you now be at a point whereby diagnosis was very evident?
Regarding treating anxiety,CBT would be a logical next step.
I fear the neuro missed something or he didn't test the tongue right side one time left side one time emg. My symptoms scare me .CBT is a good first step how does this work?
snowghost57
04-03-17, 18:09
CBT is what I was talking about. I talk to my therapist and we discuss what am I afraid of. I like to worry and predict the future. Which is silly right? I have to face my reality and deal with the facts. You have talked yourself into having a disease. The MRI was normal and so was the EMG. Each of us has to decide what treatment works best for us. I would talk to your family doctor about everything that you are concerned about and take the doctors advice.
I was trying to fight this with will power but I need outside help . I am just feeling worse
snowghost57
04-03-17, 18:14
Are you feeling worse mentally or physically or both? Do you have any friends you can call? I'm in the United States, so I don't know what facilities you have access to.
Hi Shaun, - good news about your recent neurology test. He will have eliminated anything serious. I did the same as you once - I just thought about every minor complaint I had and worried they all added up into some kind of super-illness. And I ended up seeing a neurologist who said I had nothing serious.
I've been reading posts at this website for a few months and one thing I've noticed is parents with young families are getting hypochondria. I presume the responsibility of having a family is causing the anxiety. I am single and I have come to I believe that my hypochondria is caused by loneliness. So it's obvious I need to socialise more to reduce my hypochondria, but I'm not sure what you need to do - maybe try to save some money for the future to make you feel more secure about your family's future?
I worry about my kids they will not have a dad, I will not see them grow up makes me sad. Also I just had my test Feb and I try to feel better and be positive but then the new symptoms come like speech now and tongue and hand . This makes me depressed and anxious as new things keep popping up. My family tries to help me tell me I'm alright and fine but the reassursnce doesnt last. It feelsike I'm always going to die it might not be logical .I tried living day to day but that is very hard to do due to my family . I want to wake up one morning and all my symptoms are gone I pray for that
This is just a guess, I don't know really! :) - but maybe just think about all the ways you can improve the future security for your family. Put things in place for the future. Like savings. Maybe also discuss with friends and family how they would look after your children if you died. Maybe then your health anxiety would naturally reduce?
(These are just me thinking aloud. The obvious answer is see a therapist.) :)
Hi
I posted my full story under symptoms. I had twitching in body pain and cramps in left leg and weak feeling in right hand, symptoms started in July 2015. Recently tongue twitching and speech issues jaw pain , pain in face tongue and spasm and weak right hand with buzzing. I had one emg right side leg and arm March 2016 and one emg left side of arm and leg Feb 2017. Both tests done by a neuro . Both were said to be normal. Could they have missed als. Please help me I am panicking with fear. I dont know what to do now. I feel like my body is failing and i will die soon. Help anyone,
Hi Dave that just added to my fear of dying. I was looking for reassurance. But yes i need professional help. I can't fight this beast alone. I just fear my body is failing me and I will wither away what a terrifying way to go for myself and family. That is what scares me .
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
Elen
No they won't have missed anything.
Anxiety is your problem please get help for it,or you will spend the whole of your life worrying you are going to die,instead of living and enjoying it.
Lifes too short for that, and you can't turn the clock back.
Hi Dave that just added to my fear of dying. I was looking for reassurance.
Oops, so sorry Shaun!! My apologies. Well the re-assurance is you've just seen a specialist neurologist for the second time. That should re-assure anyone.
Hi
How does everyone cope with ongoing symptoms despite getting normal results. Is therapy enough to overcome it, meds? Do you just live with them try to ignore them or fight through them. Do they affect your qulaity of life though?
I take antidepressants which reduce my obsessive health worries. (despite the name, I take them for anxiety)
Hi Dave
Did you have symptoms that you worried about when you started the meds? If so did they help you ignore/get rid of the symptoms that were causing your worry?
did they help you ignore/get rid of the symptoms that were causing your worry?
Yes. The fears became more like normal fears that everyone gets rather than distorted, magnified fears. I've returned to having some problems again, but the meds worked quite well for a long time.
Did you have symptoms that you worried about when you started the meds?
Yes. The fears reduced.
thanks Dave. Has anyone else out there been down als fear path with similar symptoms as mine? how did you overcome?
One of the ways is to not talk about it.... find something to distract yourself. Just the act of posting about it keeps you focused on the fear. Go spend time with your family. You're so worried about something you don't have taking you away from your family that you're
effectively doing that right now :(
Positive thoughts
thanks Dave. Has anyone else out there been down als fear path with similar symptoms as mine? how did you overcome?
I feel like at least 70-80% people on this site has went down the ALS path. I have and I have never been checked out by a neuro. I just finnally got it through my head that it's super rare and most people on this site worry over the same thing and I have yet to hear anyone here who has had it. And lots of people get checked by neuro doctors on here. And if anyone on this site had it it's not like the doctors can do anything for you anyways. Hard to face that but it is true. I use to say if I had some deadly diease I'd rather not know. And I feel like that for sure about ALS. I'd rather get more days not knowing then knowing. It would come out and show itself if anyone had it.
You have to move on from this fear. And start wirking in the anxiety. Easier said then done I know.
I worry about my kids they will not have a dad, I will not see them grow up makes me sad. Also I just had my test Feb and I try to feel better and be positive but then the new symptoms come like speech now and tongue and hand . This makes me depressed and anxious as new things keep popping up. My family tries to help me tell me I'm alright and fine but the reassursnce doesnt last. It feelsike I'm always going to die it might not be logical .I tried living day to day but that is very hard to do due to my family . I want to wake up one morning and all my symptoms are gone I pray for that
After my daughter was born three years ago my anxiety about dying became totally crippling. I had the same fear as you - that I would die and leave my daughter behind and not see her grow up. It was horrific. I finally started seeing a therapist and it did wonders for me. I so very highly recommend seeing someone.
Yes that was a big fear being totally paralyzed and dying and then having my family go through that as well. I'm glad therapy helped for you. I don't know if it will for me I am so deep into this with my symptoms.
Stopped reading at 2015. You'd be in a wheelchair or dead by now. Go seek help for your anxiety.
Thelegend27
05-03-17, 07:25
Don't Google your symptoms its a nightmare, i have some small pesky lymph nodes in my neck that Google scared me silly about. Low levels of potassium i think can cause muscle twitches and also dehydration. I get twitches all over my body not frequently but i do get them often just like little nerves jumping. Everyone gets jumpy nerves and twitches once in a while but for you it may be related to a low level of some important nutrient so since the doctor has seen you and also you had tests done you can be sure you don't have als i know health anxiety can dominate you but all you can really do is listen to the doctor because you cant diagnose yourself.
Stopped reading at 2015. You'd be in a wheelchair or dead by now. Go seek help for your anxiety.
Yep. I've been a twitching idiot since 2015. Had every symptom in the book. Now that I'm over the fear, all I do is twitch. Probably will forever. Doesn't bother me much anymore.
You'd seriously either be pretty much completely immobile or dead by now. Most people don't live past 2 years with the disease without medical intervention like feeding tubes and respirators.
Stop obsessing. Too many of us have lost too much time to this stupid fear. And even if it was real for any of us, what would we be able to do about it? Absolutely nothing. So why worry about it anyways? There's literally no point.
Get some help for your anxiety.
Get some help for your anxiety.
:yesyes:
Positive thoughts
Pick up a hobby. WORK OUT lol its a natural stress reliever and it proves u don't have ALS lol. My calves are non stop and I have pains and a dent. Neuro and pcp says I'm fine so I'm taking their word for it and enjoying my life. I wasted a year on this shit and I'll never get it back. You've had 2 EMGs you are ok . Re.ove the stress from your life
I am so scared of bulbar because I have been biting my tongue a lot every day together with other tongue and jaw symptoms I mentioned pain twitching . I couldn't sleep all last night. Consumed in fear. I can't concentrate on anything if I'm going to die so scared. I am sorry but this is how I feel and I can't shake it. I must be a weak person m
What kind of anxiety medication are you taking?
I'm not on any meds . My family doctor is referring me to a psych could take months . CBT or meds will.work better from.your experience or both . There are crisis centers here but don't know if they can prescribe meds counselors
---------- Post added at 17:29 ---------- Previous post was at 17:26 ----------
I am at work and I am very anxious stumbling on words my jaw and mouth feel tongue weak. I hate this feeling I wish it would go away and leave me in peace
---------- Post added at 17:49 ---------- Previous post was at 17:29 ----------
Did anyone else have fear of this disease ..How did you overcome your fear and did your symptoms persist after all clear from Neuro. If they did persist how did you deal with them meds therapy etc
Kathryn313
06-03-17, 17:55
CBT or meds will work better from.your experience or both ...
I think it depends on the individual and the extent of the anxiety. I am sorry you are suffering so much. It must be very difficult.
PS - you are not a weak person but you have an illness, it just happens to be a mental one as opposed to a physical one.
You can get help and get your life back.
Thanks for your support Katherine. I know you are right I just wished I didn't dwell on my symptoms 24 / 7. It ruins your relationships with family friends and coworkers . I was thinking maybe my symptoms of pain fatigue in my jaw and tongue were because of all the self testing I was doing to them like sticking out my tongue and stretching it around all the time to examine it. Perhaps I strained it, but I don't know why I always need reassurance from a neurologist I can't believe it otherwise
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