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, forgot tomention

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 diagnosed'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]

more symptoms--stiff joint in finger

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]

Thanks Tracy

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]

jattd

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]

jattd

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]

Jattd;

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 diagnosed'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