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Darlav

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I kind of feel guilty bothering you good people with my worries. Everyone on this site is so amazing. I have written in once before, but have been just reading for a while now.

I am getting so scared because my fasciculations, which started out all over my body, are now only occuring on my right rib cage (lats). They stay for hours. When I called my neuro. he still wants me to wait and see before doing an EMG. He is reccomending one more month. I also have sore muscles in my left arm/hand all the time. Especilly when overused. (I carry aroune my 33 pound 3&1/2 yr old too much).

Just recently my voice will go hoarse at the end of the day and sometimes when I chew food, my left cheekbone feels kind of numb. Of course I'm worried now about bulbar onset. Is this an early sign?

I am a 35yr old mother of two, and I know statistically It would be rare for me to have ALS, but I can't stop feeling this way. The focal fasiculations are really worrysome.

I am going to call back to the neuro. Monday to schedule the EMG ASAP.

I wonder if he wants to delay the test in hopes of a more accurate result with more advanced symptoms.

If something is wrong, I think finding out would be better than constatly worrying.

I would appreciate anyones thoughts. Thank you so much for your time,

Darla
 

awieleba

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Hi!
I can relate! I also feel guilty since I do not have a formal diagnosed. I do know in my heart there is somthing wrong, really wrong. I had one local fasc in my hand and then they went everywhere like you. They have settled in my ankles (one has a dent that can been seen), butt (has gotten smaller), elbows (not alot), upper thighs (jumpers that can been seen). The one that started in my hand that led to go to dr., only happen for 2 weeks and then stopped. I do feel weaker in the hand and they are smaller. I can still use them and they seem to ache more than anything, along with forearms. MY arms get so tired from carrying the kids around, this was not the case a year ago. My family use to pick on me for carry my kids around to much! I would cook dinner and hold my son at the same time! They said I was spoiling them. Now, I feel like I dont hold my 3rd as much due to being weak! MY Mother in law thought I had post partum because i did not hold my 3rd as much! I told her my arms soooo tired( and she is a healthy little chunk). I dont know where this will lead us, but I hope that we can lean on each other in times of fear. It is hard looking at the beautiful children and wondering if we can be there for them, the way we want!

God bless!
April
 

awieleba

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I fogot to mention, I also get a hoarse voice at end of night. It started 4 weeks ago, I thought maybe an allergy. My husband noticed it and said he thought more when I drink. I dont drink alot but in the summer where we live (on golf course) all nieghbors cruz with golf carts and have a few drinks at other's houses or pool!The hoarsness comes and goes everday since. I had tongue twitching one time for 2 or 3days when it first happen, none since. I can drink and eat, I dont slur-that I know!
 

Darlav

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not expert advise, but trying to help

Hi April,

Thanks for responding. This is such a scary, uncertain place to be. I'm sure I know how you are feeling, having young children as well, and I'm sorry you're suffering as well.

I by no means am an expert, but I've been reading many of the very intelligent people's blogs on this site now for 3 months and have picked up a thing or two.

When you were talking about your hands/arms feeling weak and tired, are your referring to both right and left? From what I've learned, ALS starts with one limb and works its way up that limb. If you're having pain in both hands, this may be a good sign that it is something else. Also, I believe wide spread fasciculations are more likely to be benign.

Have you been seen by a neurologist? If so, what was his/her take on you symptoms.

I wish you all the best, and will keep you along with everyone else here in my prayers.

Darla
 

awieleba

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Hi Darla!

Thank-you for reply. Yes, it is kinda wide spread. But the main issue started in my left calf. Then my whole left leg started to feel stiff and crampy. I have some muscle gone around the ankle. THe twitching was wide spread and now has settled around both ankle's and calfs. (and butt!) My hands also have thinned and I can see my tendon b/w thumb and index finger.(this concerns me).

I have seen a neuro. I went to the als neuro at the university who is the assistant professor of neurology and the als doctor. (her father passed from als at 77:()
SHe did a ncv and emg on the leg that bothers me, the hand that started with the twitching, and my back. She said it was good/clean. I did not see a report of it. SHe noted brisk reflexes, said alot of young women can have them. I did not have this before. She thinks overlapping symptoms of mixed connective tissue, but wants to watch me with an emg every 6 months for 2 years.

I am still have tests ran, and an Mri of my low back. A muscle biopsy may come soon. She has said maybe mayesthenia gravis or polymosotosis (sp). The problem with those is that when I researched them, twitching/ muscle jerking was not on there.

I am staying the course with her, and only time will tell. I keep hoping that I will feel better. We went up north and it was so difficult, I felt like my arms and legs wiegh 100 pounds, and I cant carry baby to long. LOng of the short, I dont want to go up north anymore.:( Walking up the beach changing the kids, it use to be fun-now to much work.

Have you been to a neuro yet?

I will keep you in my prayers, also!

Take care and enjoy the kids!

April
 

Darlav

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Hi April,

Sounds like your seeing a great neurologist, and great news on the clean EMG.

How long has it been since the twitching began and you noticed the muscle loss in your hands/ankles? Did you doctor acknowledge this muscle loss?

I'm not sure how long you've been dealing with this, but I hope its not progressing too fast.

I am just approaching the 3 month marc myself. Yes, I have seen a neuro. at the Cleveland Clinic. I felt he gave my a very thourough physical and had the best bedside mannor(very caring, and cute too-thats a plus) lol. He wants me to wait to have an EMG, saying my exam showed nothing abnormal.

I am trying to be patient, but whenever I have a bad day I kind of freak out.

My left hand and arm aren't what they used to be. I look at my hands alot for comparison, but can't see much size difference. Mostly I have a tightness between my thumb and index finger, some sore joints in my fingers, and my arm muscles get sore much easier.

Are your fasc. constant? Like I said, I have good days where I barely twitch, and days where it is constant (only on my rt. lats).

It makes me sad to think you are unable to hold your baby as much as you want to.

Can your neuro. do anything for you at this time to help? If it is one of those different neurological problems, I would hope there would be some treatment.

I'm sorry to ask so many questions. Heres just one more. I'm a bit scared about getting the EMG and NCV test. How bad (painful) is it? It surely does not sound like an enjoyable experience. You seem to be be a straight shooter, so I just thought I'd ask.

Thanks and take care,
Darla

p.s. I have two little girls. One just turned 5 and the other is 3&1/2. How about yours?
 

awieleba

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Darla

Hi!

My first thing that I noticed was one big twitch in my hand under pinkie. I thought it was feeding with bottle, as it only happen when I closed fist. It lasted for 2 weeks, during that time it then went everywhere. It started in March I think? Just before easter. Before that my thigh muscle's were weak since Jan., But again I had the baby and the colon issue. So, all the things I felt in my thighs and general weakness I attributed to that.

SO, I guess I have been twitching since easter (about 4 months). Some days not to many, it has calmed a bit. I dont always feel them untill i lay with my legs together and then I feel it off each other. If I was up moving I dont know if I would always. As of late mainly in my ankles. I have had some jumpers in my thigh's, I can see through clothes!
They are single fires in my legs and the one's in thigh are like 5-6 then stop, and those only happen about once a week. All this is more felt while lying in bed. Do your arms or legs jerk slightly? Mine did alot in the begging but has got a little better.

I should not say atrophy untill a Dr. calls it that. After I came on the site, I looked for dents. I then noticed the indentation in outer side of ankle. How long had it been there? I dont know, never looked. It is notable when pointed out to docter, she doest say much about it because emg was clean. You would not notice unless I pointed it out, it just looks skinny and tendon poppin out more than other side. I do have thin ankles to begin with. As for my hands, the first neuro said a slight atrophy but the specialist said that it could just be that I am a thinner person. I never looked at my palms that close. I did notice before knowing anything about atrophy that i had lost weight in my fingers. I am gettin sick of looking!

I do feel worse some days, but at this point I can still play 9 holes of golf and clean(yuk) and be with kids. GRanted, i will be aching. I should not complain untill it is more worse.

I got a hip hammock to carry my baby in. She is 8 months and sooo chunky:-D I have 6 year boy (high energy), a 4 year old boy, and then finally my little girl!

I hope all works out for you, I had to ask for my emg. The test was uncomfortable to say the least. the ncv felt like that feeling when you hit your funny bone, but every time. After the first few I closed my eyes and went to the beach. The emg was not to bad, it hurt when I had to excert my muscle with the needle in. Over all the only spot that really hurt was my back and I could hardly do it! I kept telling myself "come on, you have had 3 babies and 3 spinal Taps!" I took my husband with me for support, or unless she saw anything.

I have good days and bad days also. I try to live in the moment, it is all we have. I stopped thinking about the future so much. I have always done that. Like what will the kids do or marry etc, etc. Once I stopped that I do feel a little better. I feel lucky to just be with them today, who knows what could happen tomorrow. Being moms of young children it is soooo hard. Not to mention that I am over protective and the thought of not being able to protect or go to them the way I want is scary. I have a wonderful hubby, and he is an awsome father. So, no matter what happens I do feel safe for myself and kids. My sister said she would be in a panic if anything happen to her because her hubby (bless his heart) is not great in dealing with her 3 young kids! Alot of dad's are not, but my husband is better than any of seen. That is a huge blessing and relief.

What does your husband think about all this? MIne understands that "somthing" is going on, he knows my love to play tennis and since I cant that was a red flag. He will not go to als untill it is comfirmed or I can not move. My family thinks I have fibromyalgia. I told them the rheumy said no to that and to lupus. Only time will tell for us......

Well, stay in touch. I have a mri this week. The results of some tests should be in also. we will keep each other posted and pray for the best.

Take care and love on the kids!

April
 

Darlav

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Hi April,

Thanks for sharing your story an insight with me. (and answering my questions). I definitely think your right about living in the moment. If I worry or think too much about the future, should the worst happen, I am a basket case. Not to mention how it affects my ability to parent properly. I have been doing better with this lately.

My arms and legs don't jump, but mypinkies often do at night. Sometimes I think-did I do that willingly? It's weird to have your body move on its own, but I'm sure you know that.

I think we have alot in common (although I don't golf- my husband wishes I did). I too have a wonderful husband. He is such a blessing to me and the girls. He is a great dad as well. His family is definitely his priority (as seen by his LACK of golfing) lol!

He always tells me, "there is nothing wrong with you", and doesn't like it when I get depressed when I have bad days, but he's always right there taking care of the kids, house, and me when it happens. He went with me to my first neruo. appt., and I will definitely have him come for the EMG.

You said that you asked for your EMG. I get the feeling that if I don't push the issue, my Dr. may want to wait even longer before any testing. What do you think I should do if this is so? I don't want to have this painful test, but I am very worried. I think he's going with the 'time will tell' theory.

I'm glad to hear that you're still able to enjoy golf and take care of this kids. My thoughts exactly on the cleaning (yuk).

I hope your MRI delivers some insite and good news.

Take care,
Darla

p.s.--I can't speak for little boys, but baby girls are the best! I think every mom needs a daughter ( and they're SOOO fun to dress--this is my hobby!)
 

brendapals

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I have just a funny story to share. When I was pregnant with my 3rd son, at the tender age of 40, yes 40, many people would ask me if I really wanted another boy. My answer to them was " I wouldn't know how to change the diaper on a baby girl!"
Everyone would just laugh and laugh. I agree with the parenting issues that have come up since my diagnosed. It is very hard for me to be upset with my boys, even though sometimes they make me crazy!
I too am trying very hard to enjoy every day to its fullest, and, believe me, the house is certainly more dusty than ever. My husband is also very supportive, helps with the kids, the house and hopefully this weekend, I will teach him how to pay the bills, do laundry, make the boys' dental appts, be the "team mom" for all of the sports, hahahahaha.....and everything else that "mom" is responsible for! I'm just kidding, I have let go of a lot of what used to be a big stressor for me.
happy wednesday!
brenda
 

fiddleplayer51

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Cute story, Brenda. Sounds like you've got a great attitude, wonderful hubby, and lively happy boys!
I'm glad you're meeting other mothers here to share stories with.
Take care.
Jane
 

awieleba

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mom story

Brenda-
that is soo funny about the diaper! we felt the same. I had 2 boys, and when the baby girl came, my husband and I were panicked! We were scared of all those folds! A boy is so easy, with Grace, we were afraid if we didnt do it right she would get a infection!
All 3 of my sisters have girls and thought we were CRAZY. They said they would not know what to do with a boy! Anyway, I can relate. Bless you for being so positive.

Darla-
As far as the house, I got a wonderful cleaner to come every 2 weeks. She stays all day and does everything. even the beds and some laundry. I told my husband that I need this. If we cant afford it, take it from my retirement. It has helped me soo much to not have to worry about that. My house is large and there is no way. I want all my energy to go to the kids and hubby and family. If something is wrong, I dont want to worry about cleaning.

The baby girl and clothes, do not get me started! I love it! all the bows and bonnets and hats and dresses. It would be nice if she had some hair, but the head bands are just as cute.My sister is the way also, her youngest is only a year older so she gives me alot of her stuff. At this point my 8 month old has a closet full of clothes--more than any of us!

EMG/ncv- i would push for it! It will give you some piece of mind. I did have one at local neuro, but then went to my university als clinic. It gives me a better piece of mind. They see and work with als or other rare things. My local neuro only saw one person with als, and then they refer them to the als clinic anyway. So, I went straight to the place with experience. With 3 kids, i dont have time to waste. And I feel that I am in better hands.

well, if notice spelling errors or strange things in post, it is becasue i am usually holding the baby and trying to do it with one hand!

let me know if you get the emg. YOur symptoms on the 3 month mark. They always say to give somthing 3 months and then see what is up.

Have fun with those kids.

PS. my husband is an avid golfer, but does not get out as much either. Luckily we live on a golf course and he will take the boys on the course at night to hit balls. so, he does get some extra practice. I am not sure how much with 2 crazy boys running in and out of the sand traps!

april
 

Darlav

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Hi Brenda, April, and all

Just a quick not to thank you for replying and to welcome Brenda to our "mom's group".

Brenda,
I love your attitude! I don't know how you do it, but hope if I am every faced with such challenges that I can be as brave. I will keep you in my prayers, and hope for the best with the drug treatments. Are you taking any vitamin supplements as well? How about exercise? Although I'm sure your boys keep you very active.

April,

I will get the Emg, unless my symptoms suddenly vanish (one can hope)! Have a great day.
Darla
 

awieleba

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brenda

I agree, you seem sooo positive. I will take your lead.

hey, who wants to pay the bills, do laundry, clean anyway?

Boys are so much fun and they do love to cuddle thier mama's!

I am in the process of trying to get them more independent in light of my new hea;th concerns! I have got myself in a pickle, I have done way to much. my 4 yr old can not dress him self, i do it for them. They still are in my bed, i help my 7 yr old go to the bathroom still and i brush thier teeth still--can you say "supernanny?"!

So I am trying to get them to do more for them selves and it is not going great. As children do, they resist and cry. I dont want to see them sad if these are my last good years? BUT, either way this goes, I know that them being more independent will be a good thing! Just hard with my emotions, and oh yea, I got the baby to attend to. I dont mind the way it is, but fear for the future. Anyway, if you have good ideas on how to get these boys to do more--let me know what works for your family.

Take care and God bless you!

April
 

crystalkk

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April,

I am going through the same things trying to get my kids to do more for themselves. Your story sounds almost exactly like mine.

I guess it is our own fault, we babied them. Mine our still in my bed, help my 7 yr old go to bathroom also
(must be a boy) my 5yr old is a girl and I pull my hair out with her because she wants to do it herself but argues about what she is wearing. She tried to go out this morning with 2 different flip-flops on.

My daughter likes watching the supernanny, last night we were watching and I said maybe i should call her
and my daughter said she is not real it's just a show.

The scary thing is kids think mommy is invincable and that is the way it should be.
I always say if this is the way my cards were dealt why not when my kids are grown and don't need me anymore.

hang in there and enjoy your kids,
 

lostinlouisville

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April, Brenda

Hi, not to butt in . I am a mom of 7- 4 year old twins to 25. My first kids now 21,23,25. When they were small they were made to grow up so fast. My oldest thought the two little ones, even though not to much older were his kids. They played together and minded me so well. We would be in restaurant's and people would comment on how good they were. Now the 4 year old twins and the 6 year old all being adopted and drug alcohol babies are not at all that way. Maybe because of their start,we have had them since their birth, or maybe kids and moms are different now. My six year old has slept with us since day one, he still loves to cuddle all day and I pretty much supervise his dressing. The twins are really dependent on me and I love it. I still call the twins babies which annoys just about everyone that heres me say it. But, I don't see them growing up being any different in the long run than my older kids and since my older ones have been gone I have decided, let them be your babies as long as they want to. They will grow up fast enough. I think it has helped me that I am older and my friends are long past the stage of having little ones. So I don't have to listen to my friends compare my little ones to theirs, like I did when my first ones were little, which I think made me grow my first ones up to fast. Be encouraged that every stage they go through will in time pass. Sometimes to fast.
 
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