Scared mom of 2--Please help

[Darlav]

I have been a silent member for about one month. I hope by writting I may gain some peace of mind. First of all I have to say, I can hardly believe how wonderful the members of this forum are. So selfless, so encouraging. I am truely overwhelmed.

I am a 35 yr old mother of a 3 and 5 year old and am so scared. I feel like I'm living in my worst nightmare. I have been having fasc. for about 6 weeks. All over my body, but more recently mostly in my left arm/hand. They occur primarily at rest and do not twitch for several seconds, more like single quick bursts. Are als fasc. usually stonger or longer lasting? I know I've read that onset can really vary. I guess I'm just looking for how they predominantly present.

I have seen a young neuro at the Cleveland Clinic whom I liked very much. He said for now he would classify them as benign. But to return in 3mo. if they persist or muscle weakness develops. They are persisting, but I have not reached the 3mo. mark yet.

I am now experiencing sore, painful muscles in my left forearm and bicept. Does anyone go to the Cleveland Clinic? Any recomendations if so. Should I call for a return visit now due to muscle pain? Thanks so much for reading. You are all in my prayers. Gramp Al-you're great! I feel like your a friend just from reading you kind and encouraging words-- you are an angel. Very sincerely, Darla

[Darlav]

Sorry I left this out. The neuro did do a complete blood work up. About 3 pages of tests. All came back normal.
Darla

[Icanmanz]

Hi Darla! Bless you, dear! I wish I could come up with something, but I am totally out of words, my dear! Tomorrow, June 3rd, it will be a year since my beloved son passed from Als. He was dx'ed on March 29, 2006, and passed on June 3rd, 2007. His symptoms started around 2002, as long as I can remember, but I was so naive, so was he. We knew nothing about this God forsaken disease. I did not even know Als existed! My son, he was staying in San Antonio, Texas then. I was in Houston, my home. On February 19, 2002, he wrote me a letter, all proud, because he had his teeth worked on (Almagams, Mercury, fillings.) On September 14, 2002, he wrote me a letter, this is how it went in his own words:

Mom, remember when I told you that my left side has tremors? Well, they still have not stopped. My left pinkie does that stuff now. I do not know what is up with me Mom, but I know something is causing it, and I don't like it. I do not know what to do. I only hope it is not a tumor, or anything like that. If it's just nerves I can deal with it.. If it is serious, then I don't know. Please, don't mention it to Shannon or Dad, I do not want them to worry. I'll be okay. I will see a Doc back home!

On 10-16-02, he wrote: Mom, I have not been all well, these damn tremors are worrying me. I have them on the left side of my body. I don't know what the hell's going on, but I am concerned. One day it could be my calf, or next my hamstring, or my arm. Last night, all night it was my left side of the face. I don't know what the hell it is. I have noticed some nerve damage, but I will see about this as soon as I can.

After that, he did not complain much-----He remained in San Antonio, working there for a while. He moved back to Houston in 2005, the early part of the year. I noticed that he coughed a lot, way, way too much. I grew concerned, and urged him to see a Doc. That was when we were given the terrible news. I was so stupid when he complained at first. I thought it was just stress or whatever. This disease is bad, there is no cure, even if it is being detected early, there is nothing they can do to cure it, or control it. I jus thought I'd share the actual symptoms of this damn disease as my son described them to me. Tomorrow, June 3rd, will be a year since my baby passed. He is free of this damn disease. God bless you all!

Irma

[Darlav]

Irma, thank for your kind wishes. I am so sorry for your loss. How terrible.

These questions are for anyone kind enough to answer. I know so many of you are dealing with worse issures right now. Please advise if possible. God bless.

Do people's muscles get sore with use, like you just had a good workout, but from just daily activites? this is what is happening with my left forearm and bicept.

I also woke up today with a stiff ring finger in my left hand. The side where more of the fasc. are occuring now. It felt like arthritis, but with some bending now no feels pretty close to normal.

I don't know if these symptoms warrent an early return to the neuro. I don't have any muscle weakness yet, and feel like it may be too early to get a true result from an EMG.

Is this true, can you go too early for testing and get incorrect results, or if als is there will it show no matter how early?

Thanks

[Darlav]

Irma, thank for your kind wishes. I am so sorry for your loss. How terrible.

These questions are for anyone kind enough to answer. I know so many of you are dealing with worse issures right now. Please advise if possible. God bless.

Do people's muscles get sore with use, like you just had a good workout, but from just daily activites? this is what is happening with my left forearm and bicept.

I also woke up today with a stiff ring finger in my left hand. The side where more of the fasc. are occuring now. It felt like arthritis, but with some bending now no feels pretty close to normal.

I don't know if these symptoms warrent an early return to the neuro. I don't have any muscle weakness yet, and feel like it may be too early to get a true result from an EMG.

Is this true, can you go too early for testing and get incorrect results, or if als is there will it show no matter how early?

Thanks

[wright]

Hello Darla

I'm sorry that you're so stressed at the moment. I think your stress levels are only going to get worse because you are obviously obsessing about those twitches. If you have been on this site for any length, you have undoubtedly learned that twitches can occur for a multitude of reasons, most of which are benign. So far if you don't have any weakness or atrophy, that is certainly a good sign. The muscle soreness you are experiencing can also be due to many reasons, so please don't jump to any conclusions. What is good is that you were seen by a neuro at the Cleveland Clinic (one of the best around) and you like him (another plus). I would call him with your new concerns (sore muscles) and let him know that you are anxious. I bet he'll see you again and hopefully relieve your fears.
As far as presentation of fasics and ALS: what I have read and what I have heard most often, is that they are fairly focal at the onset (exceptions exist of course).
If you have more questions, please ask us. Take care in the meantime.

[mtngirl]

Hey Darla,

I have not posted for awhile but I just had to respond because I am in a similar place. I agree that the people on this site are wonderful and have helped me through some hard times.

Anyway, I am also a mother of two (five and eight) and have been twitching for about three months now. I also have muscle fatigue, weakness, and cramping in my left arm. I have been to three neuros now and they all tell me that I am undiagnosable for now. This is a horribly frustrating place to be. My EMG was normal as well as all of my bloodwork and MRI. I just saw a wonderful neuro who gave me some great advice. He said try to leave "disease mode" behind you for now and focus on the good news which is...I have not been diagnosed with anything. He also said that there are many benign things that can cause these symptoms and they sometimes don't know what causes it but it can go away. It's really hard to leave "disease mode" behind because I don't feel well but I am trying for now. I'm still scared because I know I'm not "out of the woods" yet.

Have you looked at Fibromyalgia? Can cause twitching and muscle pain.

Just want you to know that you're not alone. We moms feel such a responsibility to our kids and the thought of not being there is worse than any torture I think.

Take care and keep us up to date.

Irma, I am so sorry for your loss. It must have been agonizing for you to have to go through that with your beloved son...I have no words.

Tracy

[Darlav]

HI Tracy,

I was so happy to get your message. Thank you for being so kind and encouraging! I am definitely going to try to leave "disease mode" behind as you advised. I will keep you in my prayers for your good health.

It does feel good to know that there are others in a very similar situation. The fear of having als can become so terrible and consuming. I don't know how I would cope with knowing I was not going to be here for my babies. It is truely heart breaking.

The brave and giving people on this site amaze me.

I will keep you posted. As of now I have not had an EMG. If you don't mind my asking, is an emg as painful as it appears to be?

For now I'm going to try to believe that you and I are just two very peranoid mom's and that things aren't really that bad.

Write back any time and please keep me posted as well.
Thanks again,
Darla

[Loriliz]

Hey Darla & Tracy,

You can see what's up with me in the thread I started, but I too am in limboland and have two young children ages 9 and 11. We all just need to take care of ourselves and our families and hope for the best.

Best of luck to both of you.:-D

Lori

[jattd]

I have not been on here in a while but someone sent me a private message and I started reading the posts again. Not a good idea. I had a clean emg nvc and lab work a little over a month ago. Since I started reading this I have not been able to stop crying I also have 2 beautiful litlle boys 3 and 6 and have been staying away from here for them and my husband. I have random twitching every day dr. Said its nothing my emgs are fine. But yet I have teerible muscle pain in my legs every day I am pretty inactive because I live in fear depression and anxiety every day I try to pretend but its hard. As I write this the tears pour down my face and I lie next to my sons who are still sleeping and I pray for them and me. Please I wish God could help me help us all. Ilive in such fear every day trying to fake being ok that's all I want is to be ok the thoughts of ending it all enter my thoughts all day because I don't want my babies to watch there mommy suffer and cry all the time. I know yes the chances areb I don't have this I but not knowing what's wrong with me is killing anyway. Please I need help and don't know where to turn.

[olly]

sorry my pm has brought you back with your fears again. i was just checking you were ok. i was undiagnosed for for a long long time with possible ms,multi system atr ophy. i understand its the not knowing that is the worse part, but there comes a point when you have to think "ok,im still here,nothing major has happened,im still able to function so things can't be that bad".
i have told you before stress and worry makes symptoms worse,i know it is hard not to get stressed i have in the past,but now i take a more chilled attitude,or try to. i am still here and hope to be for a long long time yet and i can bet you will be too.
you really need support more than anything else and you can use my email address if you dont want the worry of coming on the forum.
godbless
caroline:)

[Loriliz]

I know how you feel, really I do. The not knowing is awful but, honestly, would knowing help?

Right now I have decided to stay informed, keep track of what's going on with my body, takes lots of ibuprofen and try to live my life the best way I can. Ignore what you can ignore and try to cope with what you can't. Making yourself and your family miserable in the meantime is going to hamper your quality of life. Worrying won't make it go away, it will just make it worse.

If you are having a really hard time, try talking to your GP and maybe an anti-anxiety medication will help. I take Effexor, but there are lots of others out there.

Good luck and take care.

[jattd]

My general dr. Thinks I'm a joke. I am so scared of dying that it has taken over my whole life I don't know how to feel happiness anymore I don't laugh or smile I don't feel anything but fear I honestly feel like I am already dead

[Angie679]

Just wanted to say that my heart goes out to you and I will absolutely add you to my prayer list. I can really sympathize with all that you are going through because I am going through the exact same fears. I have been twitching for about 10 months now and have been to a neuro and had the emg test. The test itself is somewhat uncomfortable but after awhile you know what it feels like so you come to tolerate the little jolts. My test came back negative but my mind will not let it go. They only tested one side of my body and wouldn't you know that now it's the other side that seems to be twitching all of the time. Every time I feel twitches I start obsessing. My doc recommends I try an anti-anxiety med like Effexor and I am considering doing that. I also worry because I have 2 boys (13 and 8) and my mom is still enduring the heartache of losing a son (my brother died in an auto accident) Anyway, what helps me is prayer and yoga and the fact that we have no control over when God will call us home. This site has many many wonderful people who have so much knowledge and compassion to share. I'll be praying that you find peace. Take care of yourself.
Angie

[Icanmanz]

jattd----God bless you! When my son was dx'ed with this disease, for a very long time I felt exactly the way you are feeling right now. I know what it feels like to walk while you are dead, you are breathing, but you feel numb at the same time. I felt like my life was over. I forgot what it was like to feel happy, content, at ease, etc. I wanted to stop the world!!! I hated to see a day go by. Everybody around me talked of birthdays, anniversaries, birthdays, Easter, Christmas, and what have you. I had nothing to look forward to. I would actually tell them, that I was not looking forward to anything, because every minute that went by, I knew that my son's end was nearing. I hated to tell them, but I had no choice. I went as far as getting all of my albums, and I had lots and lots of pictures of all my relatives, friends, and my family. I emptied all of my albums. I kept my family's pictures, sorted all the pictures, and arranged albums of each one of my 2 children, One album of me, one of my husband's, and one album of each grand child, all the rest of the pictures I gave them back to family, I am talking about sisters, brothers, nephews, nieces, in-laws and such. I asked them not to be mad at me, but I wanted for these pictures to go to the right persons. Do you think I was crazy for doing that? My mind was really playing tricks on me! I dreamed of dying, I wanted top go right after my son, I guess I was preparing myself just in case. Now, I was not suicidal or nothing like that. I just prayed to God to take me. I guess He is not ready for me, because I am still here, but I am ready anytime He wants to call me Home, and I have no fear. I am not trying to sound looney, but this is what Als does when it hits home. God bless you folks!

Irma

[patricia1]

My general dr. Thinks I'm a joke. I am so scared of dying that it has taken over my whole life I don't know how to feel happiness anymore I don't laugh or smile I don't feel anything but fear I honestly feel like I am already deadn


I am sad for your children and family. They need you and you are obcessing .Your children need you now. before you know it they will be grown. Live and laugh now while you are young and in my opinion healthy.

Talk to your GP about a antidepression.

Pat

[CindyM]

Jadd- everyone here has offered some great advice. I also read on another thread that none of us are guaranteed a long life. Best to enjoy each day with our families. If you are not able to do that I hope you decide to ask your Dr for something to help you cope with this obsession. You deserve happiness. Cindy

[jattd]

i can't stop obsessing now my throat has been hoarse for almost a week with nasel drip and pain all these things make me beleive it is this disease. I know you all think im crazy but im not the only one that comes on here like this. I AM SCARED TO DEATH . I now think im haveing problem in my throat canstant clearing real dryness feeling i have to cough cause its so dry, lump in the throat. I also have uncontrolable crying. Im sorry because I know most of you on here are deeling with this real disease I just dont know where else to turn. Please tell me how to live life when I cant get rid of this fear.

[crystalkk]

Jattd,

You are not alone there are alot of young mothers on here with small children that are scared to death.
Are you taking anything for anxiety? The hoarse throat and nasal drip really might be your sinuses the nasal drip will make your throat raw and cause pain. We don't think you are crazy at all.... Try and keep busy with other things, it really helps me when I'm around other people and not talking about what I have going on, when I am by myself that's when I think too much and my symtoms feel 10 times worst. Please try and take care of yourself, your children need you. I believe you were supposed to go back to the Rhuemo, what was the outcome of that appointment?

[jattd]

I cant stop crying it almost uncontrolable I know it does not matter if I have this disease weather i know or not im going to die. My husband tries to mak me feel better and says its acid reflux i have to drink water to get my food to gao down can acid reflux do that. I cant take this there should be blood work or a test to tell you if you have this with tachnology the way its grown it should not be a waiting game and there should be a freaking cure by now nobody deserves to suffer I hate this world I dont understand why people have to suffer to die it does not make any sence

[crystalkk]

Jattd,

Unfornately alot of things don't make sense...anxiety can cause that lump in throat, which will make you have problems swallowing. Are you taking meds for acid reflux they can make your mouth very dry and cause swallowing problems. It sounds like you have a very caring husband.. Please try and get a grip on yourself and try to stop crying, put on some music it really lifts my mood.

[jattd]

I really appreciate your kindness it reall means alot to me. I have tried anxiety meds and not thinking about it and going out and playing with my kids but it does not help because its all still there. I dont want this anymore this is not life i feel like im in my own hell i just want to give up.

[crystalkk]

jatted,

Maybe you should talk to a therapist. You have small children and you can't give up. You probably don't even have ALS there are so many things that need to be ruled out, Do you have any real weakness or atrophy, I don't believe you mentioning that....that is a very good sign. Instead of worring about ALS try and find something else that is treatable and have some hope.

[jattd]

i have alot of muscle pain arm legs and muscle twiching al over mostly tyhe legs i cant stop crying im completly exhausted all the time my muscles in my legs feel like they shake sometimes also now this throat thing. maybe i am making myself crazy I dont know waht to do i cant get it out of my head i feel like everbody is better off without me especially my kids its not fare to them and i do have this i am not going to let them watch me die

[jattd]

know everyone on this board has givin very good advice and reasurance. I have just read irma's thread and have not been able to stop crying. My heart goes out to her to all of you. maybe you are right maybe I dont has this disease. You see im not afraid to die if I do. I am scared and afraid for my family for my boys who I love more then life its self and my mother who I know loves me more then life itself. and my wonderful supportive husband. Because you see they are the one who suffer once we go not us. They are the ones who have to try to go on without a mother a father or son or daughter or friend.

[hopingforthebest]

Take one day at a time. I will get off the forum right now and pray for you to have a peace that passes all understanding. Only God can give you that peace honey. Give it to Him and take all this off your shoulders. He does not want you to carry the burden.

Will go to pray for you right now!

Patty

[Angie679]

Hi; I don't know if this will help you or not to hear but I have read your threads and I have experienced exactly what you are going through to the tee. I also have muscle aches and twitching; mostly in my legs. About a year ago I had that same thing going on with my throat too. This constant clearing of my throat and feeling like I couldn't swallow properly. I saw specialist after specialist and went through alot of testing. I had one doc tell me that once I get my head straightened out all of these random symptoms would go away. Well the good news is the throat thing went away on its own in time (but it took many diagnostic tests to convince me that it wasn't anything serious) and once I went through the EMG tests I slowly began to relax and the muscle aches have pretty much resolved. I do still have random twitching here and there but I keep talking to myself and telling myself that thank God I have today and I can get up and walk, see, feel, touch, love my two boys. We are not promised tomorrow so we have to enjoy today and whether we worry about things that may or may not happen will not change anything. We can't control how many days we live, only how we live them. I should take my own advice, but it's very hard when you're consumed with worry. I know exactly how you feel. My mom already lost a child, and I just can't imagine her pain if she lost me (not that I'm anything special), or if my kids lost me it would be horrible. But I try to remember that if God forbid that happened the pieces would be picked up and life would go on. Please try to find peace anyway you can; I have spent the last 11 months consumed by this disease and I look at it as lost time; that makes me angry at myself and it makes me resolve to the fact that I am going to take control of this anxiety and beat it. My therapist is helping too. I will pray for you; prayer is so very powerful, because God will take it from you if you want him to. Be well & think positive and remember the only thing to fear is fear itself. Sorry this is so long winded.

Angie

[jattd]

I try and tell myself I dont have weekness im not tripping or dropping things. I have muscle pain and shaking and twitching its not constant on and off during the day i know in my heart i cant change what will be but it doesnt help the fear that i have. My mom and husband want to know how I got this in my head I guess this stupid internet that pulls people in to self diagnose thenselves i know i should feel better i have a clean emg and neuro exam but then i hear about people on here who had them to and i meant nothing so just when are start to fear a little better the fear comes back. i know this fear wont make life better I should be happy I can walk talk hug and love and play with my children but this depression and crying and fear wont go away a wake up in the morning with such fear and anxiety even though i was told everything is ok I just cant beleive it doctors are not god they are wrong sometimes and at 35 they dont want to beleive there can be something wrong. anti depressant wont work anti anxiety meds help for a little while and then make me more exhausted. I dont know anymore.

[Angie679]

I am no professional however it seems appropriate to suggest to you to seek therapy. You may have tried this before, and felt it did not help, but you have convinced yourself that you have this disease and truly it is possible and probable in your case to have convinced yourself to the point where you are symptomatic. I'm not suggesting it's all in your head, but when you are at the point where you are not able to look beyond this in any way, your thinking really becomes cloudy. I can tell you that I went to a couple of therapist until I found the right one who understood generalized anxiety disorder and who worked with me slowly to re-train my thinking. It is very difficult I know to step away from the situation and see it from a different angle. My family is also very tired of hearing me "complain" and it is to the point where I cannot talk to them about it. But I can to my therapist and she understands and is able to talk me out of it. You may also want to see a professional who can work with you to find the right balance of anxiety medication. There is so much out there and where one could really harm you, another would be just the right chemical for your need. I believe that with the right medication and talk therapy you will begin to feel better. It takes alot of patience but you're worth it; and your kids are worth it. As I'm typing this my leg is twitching. I'm going to ignore it however. Take care of yourself.
Angie

[jattd]

Is the twitching normal do you beleive really its nothing how do you make yourself. I have so many weird symptoms i can not ignore them i try they dont go away or get better. I have been trying to find a therapist i have not had much luck. I made an apt to go back to the neuro on friday if he does not think i have als then i want him to refer me for a second opinion because i cant live this way not knowing what is going on with my body i need to know what is wrong with me. if it is not this then i want to know what it is.

[wright]

You already sound better; it sounds like you're ready to fight. I'm sure your docs will get to the bottom of your problems . . . BUT . . . you have to believe what they tell you. I'm sure the therapists will help you with that and we are surely here to help you, too. Keep channeling that fear into something positive and you will be well on your way. Take care.

[patricia1]

yOU are in a hysterical state nothing we tell you will convince you that you do not have ALS ,Reading your threads it is very obious you need to be in therepy.You dont want you family to get annoyed after a while with your abcessing. We are not equiped to help you. So plase get help. And get off the forum You are scaing yourself to death, May God Bless you
Pat

[Lorie]

Hey Darla & Tracy,

You can see what's up with me in the thread I started, but I too am in limboland and have two young children ages 9 and 11. We all just need to take care of ourselves and our families and hope for the best.

Best of luck to both of you.:-D

Lori

I agree with Lori. Live, Love and Laugh Often. A lot of us are in Limbo Land. I am not going to let it drive me. Try not to worry so much, I know it is hard not to do.

I am not afraid to die. It is the suffering that I cannot bare to see anymore!

Lorie

[wheatonmommy]

Is the twitching normal do you beleive really its nothing how do you make yourself. I have so many weird symptoms i can not ignore them i try they dont go away or get better. I have been trying to find a therapist i have not had much luck. I made an apt to go back to the neuro on friday if he does not think i have als then i want him to refer me for a second opinion because i cant live this way not knowing what is going on with my body i need to know what is wrong with me. if it is not this then i want to know what it is.
jattd

I recently registered and I am new to this site. I joined to learn more about ALS in the hope of being some comfort to my 57-year old Aunt who was recently and definitively diagnosed with ALS.

The anxiety, fear, and sheer desperation in your posts is palpable. My heart aches for you. It is in this spirit that I offer my thoughts. Moderator--please bear with me while I stray slightly off topic to provide some well intentioned advice for someone whom is clearly hurting and very scared.

I do not have ALS symptoms but I have faced other serious health threats. I, too, am the mother of small children and I am close in to you in age. At one point, I became obsessed with death, dying,and the entire notion of my children's welfare should I meet an untimely demise. Some of my concerns were valid and reasonable. Many were not. But it's hard to see this for yourself when you're in the midst of this type of depression. And make no mistake about it--the type of anxiety that you are describing is almost always linked to depression. Please, please...seek therapy and the correct medication to get you out of this cycle. Because even if it turns out that you do indeed have a chronic, serious, or heaven forbid-- terminal disease (unlikely), you will be far better equipped to deal with ANYTHING that comes your way if your emotions and mood are on a more even keel.

Here is the piece of advice that I most wanted to pass along dear sister...(It was given to me by a wonderful GP who had tested everything that could be tested on me and still arrived at no definitive diagnosis):

NONE OF US are getting out of this thing alive. Not one of us.

ALS OR no. Enjoy the time you have. If you are unable to do this without pharmaceutical assistance, so be it. While you're fretting, moody, and anxious, precious time slips away. You may not have a handle on your physical affliction but here is what you DO know for sure: Your children will have memories of an anxiety ridden, petrified mom who was paralyzed by emotional turmoil. For them and for you, get the correct pshychiatric help you need and I think you will see things with greater clarity, more perspective, and most importantly, more peace of mind. At this point, your FEAR is worse than any real or imagined calamity that you could endure. Meanwhile, the time that you do have, which could be days, weeks, months, or decades...is being squandered. I say this with love and support--not judgement nor criticism. Depression and anxiety can rob your children of their "real mommy" just as much as the most dastardly, physical disease you could think of...including ALS.

John Lennon said it best..."Life is what happends while we're busy making other plans".

God bless you and keep you. You are in my thoughts and prayers.

[Al]

Wise words I thought wheatonmommy. Don't have a problem with that.
AL.

[crystalkk]

Wheatonmommy,

Like Al already said they are WISE WORDS of WISDOM. I am 39 and have only kept one fortune from
a fortune cookie it said " the only certainy in life is nothing is certain."

[fiddleplayer51]

Wheatonmommy,
I loved the way you summed it all up. Your advice is fantastic! You were both compassionate and firm.
I hope jattd can read it and really take it to heart. All of us can learn from it.
Thanks for your wisdom and all the best to you as you try to comfort your Aunt. I hope she is able to have some of your wonderful insight, and I know she will benefit from your presence in her life as she deals with the progression of her ALS.
Keep us posted of what you are dealing with both in your life and with your Aunt.
Take care and thanks for becoming part of this forum.
Jane