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Old 10-09-2007, 11:29 AM   #1 (permalink)
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I mean how many doctors need to tell me its not als? Especially when the als doc said he didnt think so either. I still feel i have this disease, I went as far as calling him yesterday and he returned my call and told me to stop obsessing about this disease. He is checking my potassium channel and lymes. Ive had so many members on here help me and i appreciate that so much you dont even no! iam driving my hubby nuts But this is so scary regardless if its hust twitching so far for 5 months nothing else, ive read on here about members on here who twitched for a year then got the weekness well one member did. I have weared vibrating movement in my right leg and foot that is constant and pulsating ear thing now. I do no anxiety can do a lot but come on twitch twitch twicth even when iam laughing or happy just doesnt add up.now i feel twitches in my tounge and think iam sluring my words like when i say shower ill say tower. Iam almost positive ill be here from a year from now saying yep i got als. thanks jenny

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Old 10-09-2007, 11:48 AM   #2 (permalink)
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Hi Jenny,
I have read some of your posts. Unfortunately, AS YOU ALREADY KNOW, if it is ALS, you will find out whether you obsess on it or not, so although you are obviously fearful, I would REALLY suggest that if you are driving your doctor crazy and your husband crazy, then change the focus of your life for now, even if it means that you promise yourself you won't go on this website more than once a week . I don't think there is anything anybody else can tell you on this site except...YES, people have had your symptoms and developed ALS, and YES, people have had your symptoms and have been diagnosed with BFS or a virus and have been lucky and symptoms went away. BUT, whatever it is..IT IS WHAT IT IS and for you to be constantly throwing away your time and relationships (with doctors and husband and others) it is, in my opinion, a waste of time....so take a deep breath and take it one day at a time and don't waste your life away worrying about it. If you have any tendency toward being a hypocondriac, which it seems your doctor clearly thinks so, you will begin developing symptoms by just reading the posts.....so live your life and if you develop some more symptoms, go back to the doctor, and if remember that we all have fear, but as far as predicting the future...we all wish we could and NONE OF US CAN. Nobody knows if you will have it a year from now, so just take your year and have a bit of grattitude and fill it with other things than paranoia and LIVE YOUR LIFE AND LET IT GO FOR NOW. I would think that I would have more regrets a year from now if I found out that I had ALS and I just wasted my most healthy year away by obsessing on it. Bottom line, if your symptoms are only affecting your head, go use your body and be grateful it works. Do meditation or see a doctor/therapist to deal with your fears. Time will tell, and there is nobody here that can validate if you will/will not have ALS a year from now. Good luck and I hope that you really consider what I am telling you.
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Old 10-09-2007, 11:59 AM   #3 (permalink)
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I appreciate your honesty, i do have to spend more time focusing on my pregnance and husband. i cant go on any drugs right now due to being pregnant. Ive read a couple of your post i see that your scared to have you had any teat done? how are your reflexes? and i did check out bfs a long time ago and it didnt seem to fit me because i thought twitches came and went with bfs?
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Old 10-09-2007, 06:01 PM   #4 (permalink)
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Hi again,
I have tried to post this response a couple times but it didn't work, so here I go again. This is extremely long, so I apologize.

Congratulations on being pregnant. You pregnancy sounds like a great alternative to "obsess" on. Maybe everytime you feel the stress of wondering if you have ALS, just redirect your self to do something toward being a mother....like reading about your pregnancy, planning a baby shower, preparing the room or reading parenting books. I have three amazing kids and I feel blessed every day that I can tuck them into bed at night and hear their sweet little voices.

Obviously there is nobody on this forum who can predict if your symptoms will become ALS, and it is a complete waste of time to focus on that becoming a reality. If your doctor & your husband think you are "obsessing", then for now, I would focus elsewhere unless you have some disabling symptoms. It seems you are functional with your body, so why not just enjoy the ability to do the things your body will allow you to do? If you have a tendency toward hypocondria, then you may develop symptoms if you focus on it, plus stress makes people so unhealthy your baby doesn't need that. The mind is very powerful, so use it in a way to try to make yourself better.

As far as I go, yes, I have been concerned about ALS as well as Lyme and I am routing for neither. I have had the twitching that has now slowed to mostly my stomach, right leg and left forearm/hand, accompanied by cramps in my hands, arm, upper arm and legs. If you had these cramps, you would definitely know you had them. They are so bad that when I go up our short flight of stairs I have to go down on my knees because they ache so much it almost feels like a charlie horse. I just try to fit my "going onto my knees" to take a minute to talk to my little ones while I rub my legs or seem like I am actually doing something so it is not a big production. I have dropped at least a shoe size on my twitching side, and also have a toe that no longer functions with the rest of my foot. This is also very livable. My biggest issue is that I have had such difficult with eating that I lost 12 additional lbs (on top of the 20 or so I lost in the last year and a half without trying) because it is so tiring to eat because my tongue actually is fatigued to move the food to the back of my throat. Is that an ALS symptom? I have no idea, but the fasciculations in my throat area were so strong for a period of time that I think it may have just worn those muscles out. I have a heavy feeling of breathing, but instead of feeling fear like I used to, I just make myself breathe and at night when I am falling asleep I just hope I fall asleep so I don't have to think about it. So, my point is that I have a few symptoms and still hoping I do not have ALS, despite some symptoms. I try to volunteer in my kids school and stopped constantly talking about it to my husband and concentrate on being healthy and doing what I can to sometimes just get through the day and make food go down my throat. It sometimes is hard, but I had my GP and my neurologist tell me it is probably a virus, so I hope it is a virus and will soon go away. I had an EMG, is was negative. I did a lyme test..negative. I tested for electrolites, magnesium, calcium and they are fine. My MRI is clear. My speech is inconsistently slurred, which I noticed, and then a friend of mine who is an ER doctor also noticed although nobody else seems to...which is great if you ask me. My ANA, Creatin, SED rate is good, tested my Acetylcholine ...good, CBC...good except carbon dioxide level is out of range, Cardio CRP..good...my muscle with all the twitches and most aches is dented and palm also. I have had my thyroid ultrasounded to see if that is what is blocking my throat and the ENT look inside and they have found nothing..... I had a clean EMG/Nerve conduction test SO FOR NOW, I dO NOT HAVE ALS. That is what the doctors say, so there is NOTHING ELSE FOR ME TO DO! As long as I am mostly functional I am concentrating on gaining the weight back and going about my life other than I do check this board because it is not completely impossible, but DON"T LET FEAR OVERRIDE YOUR LIFE... There are a zillion people on this site that would give anything to trade you bodies if all you have is twitching and fib symptoms, so go put your energy into you and your baby. If you have cancer, ALS or diabetes it is going to eventually show up, so why waste this precious, PRECIOUS time when your body is still working and you have loved ones that need you. If there is an issue in a year, deal with it in a year, not now. I think of Jaime and Momma and they struggle daily just to keep up so TRY...PLEASE TRY TO CONCENTRATE ON the important things for now. I think we all hope that "this too shall pass".
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Old 10-09-2007, 06:32 PM   #5 (permalink)
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Midnight,

I have so many of the same symptoms that you do- especially now the breathing and the swallowing. My throat and tongue twitch and sometimes my vocal cords just hurt for what seems like no apparent reason.

I do have to agree with you. I have been to many doctors, and all have said no ALS for now. They do not know what is wrong, so for now I am trying to concentrate on my daughter and all the things that I still can do. Thank you for sharing that as a way of coping, because that is all that we can do.
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Old 10-09-2007, 07:51 PM   #6 (permalink)
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My Grandpa always said that anybody who has a lot of time to obsess on something would make better use of their time trying to help somebody else. There must be a local library, senior citizenís center, or someplace that can use an extra pair of hands. I always found that gramps was right; the more you focus on others the easier it is to get out of your own head. JMOHO. Cindy

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Old 10-10-2007, 02:20 AM   #7 (permalink)
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Midnight,

Have you had a swallow test or a breathing test? I have bulbar onset ALS. These tests showed that my breathing and swallowing were both impaired and helped with my diagnosis. I hope you don't end up with the same diagnosed but no matter what it is you need help getting proper nutrition.
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Old 10-10-2007, 06:24 PM   #8 (permalink)
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Cheryl,

So sorry to hear about your diagnosed! How are you coping?
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Old 10-10-2007, 06:38 PM   #9 (permalink)
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Yes, do tell us how you are doing, Cheryl. I am always up for a discussion on how folks are living with ALS. Hope tonight finds you as well as possible! Cindy
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Old 10-10-2007, 11:43 PM   #10 (permalink)
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Hi Cheryl,
I have yet to go see a neuro that specializes in Als. It has been interesting to find out how screwed up our medical system really is. I finally got an appointment with Dr Graves at UCLA for November. I have considered going through the ER some nights but i prop myself up and take something to make me fall asleep fast. I have figured out ways to eat & that helps with the weight. My hope is that UCLA will figure things out. Hopefully they can give me an antiviral & call it a day. I noticed you are from Salem. I lived there during my teen years. Went to North Salem High.

I am sitting next to my sleeping kids listening to their beautiful snores and hoping that you are getting the chance to enjoy those grandkids. I hope I get grandkids . Thanks for the info. I'll ask for those tests.
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Old 10-11-2007, 11:49 AM   #11 (permalink)
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Quote:
Originally Posted by scared of als View Post
I mean how many doctors need to tell me its not als? Especially when the als doc said he didnt think so either. I still feel i have this disease, I went as far as calling him yesterday and he returned my call and told me to stop obsessing about this disease. He is checking my potassium channel and lymes. Ive had so many members on here help me and i appreciate that so much you dont even no! iam driving my hubby nuts But this is so scary regardless if its hust twitching so far for 5 months nothing else, ive read on here about members on here who twitched for a year then got the weekness well one member did. I have weared vibrating movement in my right leg and foot that is constant and pulsating ear thing now. I do no anxiety can do a lot but come on twitch twitch twicth even when iam laughing or happy just doesnt add up.now i feel twitches in my tounge and think iam sluring my words like when i say shower ill say tower. Iam almost positive ill be here from a year from now saying yep i got als. thanks jenny
So many neurological disorder share the same symptoms that it makes it difficult and of course we fear the one that could be fatal.

MS, Lupus and even Sjogrens Syndrome can have these symptoms when affecting the nervous system. Generalized or other DYSTONIA'S can start this way. I would think if you live in an area that has a movement disorder specialist it may be worth the trip.
Of course they are neuro's who specialize in movement disorders that many don't even know about, such as the Dystonia's. Only a handful really know about them.
Have you been on the sites Dystonia Medical Research Foundation or WEMOVE?

It may help. I am going through the same fear, especialy with it in my family. Scared silly. Got your pm and didn't even know we had them here. So glad to meet you!
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