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Sammantha

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I finally called and i will be going to the ALS CLinic at Duke University on the 16th of October... The receptionist said depending on what the doc finds or does not find depends on how long i will be there, because they will order and do all the tests that day! If he feels it is ALS i will meet with caseworkers, and if it is not he will try to figure out the cause of the muscle problems. I could not believe all that his receptionist told me...... Now if he says not ALS, but lets see what is causing this i will be extremely happy! If he says, yes ALS lets help you i will be devastated but releived that i will be getting help because i am having a hard time holding down my job. Thanks for your responses on my advice question... I have a question for PALS, my new co-worker pulled me aside and asked if i had a problem with her or if i was upset, because i get real quiet and distant...... I realized that she did not know about my condition because i do not talk about it at work... I told her that i am exhausted by the end of the day, as she knows, but by the end of the week i am so sore and my muscles are so heavy and weak i could cry because all i want to do is rest. Even talking by then takes too much energy, so i get real quiet.... That is not good when you have to entertain eighteen children for eight hours straight...... ALso my emotions are getting worse, i try not to talk about things that upset me because i cannot rationally talk about them without breaking out i nto hives and crying... and this happens immediately.. I also break out in temper tantrums when stressed at home that end with uncontrollable crying, and i know in my head that it is crazy but i cant stop my reaction.... Once it is over i am fine and have to apologize to my hubby and kids..... It is wearing on them...... Does anybody else have these emotions? Its like my whole body feels tense and overwhelmed and bursts out, only with little cause.... I am not depressed, so i know it is not depression.... These tantrums are not always there, they are sudden.
 

CindyM

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Hi Sam-I am sorry you are being affected both at work and at home- you must feel like you are boxed in. :( I think everybody has been struck with emotional liability at some point. Some of us doe to stress and some of us because of the disease. I also feel more emotional if overtired.

When you go to the clinic be sure to ask for a session with the sleep lab. I found that I have much more energy if I get enough oxygen at night. They may not start you with a bipap. They put me on a CPAP in April of 07 but on Tuesday I am going to be evaluated for a bipap.

I hope they have good news for you when you go to the clinic. Whatever it is, be sure to check in with us afterwards. We are here for you! Cindy
 

midwestgirl

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HI Sammantha,

My mother has been having crying outbursts this past week. We have been trying to figure out what will help. Only once did she admit to having pain, but I think she is either having pain, or cramping in her arms because she rubs them alot. Not sure - maybe she is not really sure, if it is an all over body achiness. This generally happens anytime after 4 pm, so I have also thought she gets tired, but refuses to lay down, and then the pain, or body aches, just seem so much worse. We have tried different medications, also we have increased, then decreased, some of her meds because she will have these outbursts for a couple days, and then the next day or two she seems really sleepy. So, we are not sure if the medications are making her sleepy, or if she is just exhausted from her outbursts the previous days.

Your last two sentences are interesting - I have to wonder if that is exactly how mom feels. Mom's speech is gone, and when she is having a crying episode so will not write, or indicate in any way what is wrong. Mom is on Paxil for depression, and Xanex for anxiety, but neither one seems to be helping the emotional lability.

Good luck, and keep us informed how things are going.
 

kathmc

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tantrums!

Hi Sammantha,

I've been away from forum long stretch so haven't read your other posts. When tired or stressed my reactions are often like yours. Being asked to repeat myself over & over gets things heated up. You are not the lone r(anger).

I don't know if it is the 3-4 year social isolation that has weakened my social skills or what. Recently decided that I must be responsible for my words. This is esp. important sice my husband is very stressed & gets mad easily. I can not imagine dealing w/ 18 children. If they are all yours maybe they could try entertaining &/or caring for you. A lot of my stress comes from not giving up old roles even though they are physically impossible now. Am working on that but it is a challenge.

Wish had more to offer.
best to you,
kath
lexington,ky.
 

comfortable with ALS

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hello

hell iam new to this site and would love to talk to people can someone please tell me what to do jenny
 

Sammantha

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Hi Jenny, the best thing to do is just put a thread out there! People on here are real caring and helpful. I think a sleep session is a good idea Cindy.. I am so sorry for you midwest, your mom must get so frustrated. Kath, Heckkkkkkk Nooooooo, i have two kids the others are my preschoolers were i work, i am working with a new teacher and she thought my demeanor was due to not liking her......Which is not the case she is a great teacher..Thanks Sam
 

Bev

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Hi Sammantha!
I will be at Duke tomorow also and hope to meet you!
This will be my 2nd visit and I really like this clinic.
It is very difficult to type that is why this is so short.
I have prayed for both of us to get answers tomorrow.
Bev
 

Saubier

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Sammantha,
Get a prescription for a mixture of dextromethorphan and quinidine. It will enable you to regain control over your emotions. It's pseudobulbar syndrome or something.

Pappy.
 
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