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Sammantha

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Hi, my name is Sammantha and i am 28 years old and newly diagnosed. I have some muscle atrophy but i can still use my muscles. I get tired quick and strenuous activity causes my muscles to shake/stiffen/cramp and i get an all over feeling of heaviness. Like i have weights attached to my body. If i do strenuous activity like yardwork i pay for it the next two days by having to lay low.... But, i can go on normally if i take time to rest and do activities like light swimming, this loosens my joints and causes less stiffness. I am so scared when i go back to work because i know i will not be able to keep up with the children i take care of. Their are 18 of them 3,4, and 5 year olds.... There is no way i can say okay kids don't do anything for the next hour because i need to rest...... Any suggestions out there on how to deal with this? Are you like me, i look normal, i just don't have the strength and endurance of people my age.
 

patricia1

Very helpful member
Joined
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lopatcong NJ
Hi Samantha I too had a job I couldnt keep up with I was a nurse and being on the phone with patients results and prescription called into pharmacy my speech was so slurred they thought I was hitting the booze. What I would do is try and find a job where you can sit maybe half days or as I did go on disability I wanted to continue but without my speech I couldnt really do much. I dont know your skills but if yiu dont have to quit I wouldnt.Your too young. So look into something else .God Bless you Pat
 

Omar

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Diagnosis
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BE
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Belgium
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Brussels
Hey Sammantha,
I am also 28 years old but was diagnosed a year ago and have had symptoms for two years now, I still look normal, only my right hand looks different since I have lost the muscle between my thumb and Index. I feel also tired most of them time, and was lately looking for a job, but have decided to remain a freelancer cause I don't expect any company to hire ppl with such an illness even though they do look normal.
 

Sammantha

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Response to questions (Sam)

Thank you everyone for replying. The reason i have not found another job is because i am afraid to loose my health insurance at this time. I guess when i go back to work next week i will see how my strength holds up. My diagnosis has been a very long battle/road. I basically was diagnosed backwards. Where i worked i was getting sick a lot from mold and children that had strep, my body basically would feel like i had the flu and I did not want to move. All my bloodwork came back fine, but at the same time i had pain that would be so intense it would wake me at night. My lower back would cramp and spread to my pelvis. My chest on the left side would cramp and radiate down my left arm mimicking heart attack but my heart is fine. My GP ordered the usual tests and they all came back normal. Then i was at work and noticed my muscle twitching between my thumb and pointer finger, it made my thumb move and i though it was funny because it lasted so long (left hand.). My GP referred me to a surgeon because my lymph nodes would stay swollen for months (due to severe mold allergies i found out a long time later.) when i saw him i started having muscle spasms in my legs and my leg muscles would look ripped! I also had a squeezing sensation that ran up my left arm, up my neck, along my face and under my tongue. Months later it would run down my leg, now i know it was spasticity. The surgeon did a thourough evaluation of my muscles and body then said to come back if i continue with the problems.... I also had been complaining of severe fatigue for many years, docs would say "oh your a mom your suppose to be tired all the time." I also had shoulder stiffness that would become extremely painful for many years, but my GP thought i had tendinitis. I started to get muscle twitches constantly, the big ones... They were so annoying, some lasted minutes and some lasted an hour! I noticed muscle differences between my left and right side so i went back to the surgeon. He noted muscle wasting of my hand, bicep, thigh, and foot, all where i had complained about the weird tight feeling and weak muscles. He sent me to Chapel Hill to the Rheumatology clinic, he thought i had vasculitis (i was contantly sick with sinus infections.) Rheumatology ruled out anything autoimmune and they took all the blood tests necessary including lead and mercury even aids. They all came back normal. They sent me to neurology for possible MS. The MS "expert" said i had minor upper motor findings and made me get a MRI of my brain and spine and a lyme test. They came back normal. She tried to brush me off, but then referred me to the neuromuscular clinic. The doctor found brisk reflexes in both legs then sent me for EMG. The EMG came back abnormal, positive sharp waves, fascic, fibs, but NCS was normal. Six months later i got another EMG that showed a lot more damage.... So here i am...... They really did not want to believe i was sick because of my age! I do not come across as a sickly person nor do i want to, i find most people are put off by it so i try not to talk about it. I take anxiety pills because i get insomnia from worry and i take Provigil because i fall asleep all day! These are the only meds i take. I go back to Chapel Hill on the 30th and i am going to ask to be sent to the ALS clinic at Duke which is 20miles away from Chapel Hill....... Oh and to answer the twitching questions, they started in my hand and worked their way up and eventually all over my body, especially my thighs. I rarely get muscle spasms now but i do get stiffness and PAIN,,,, i do not understand why they say ALS does not cause pain, i have a dent in my lower back where my muscle has died but i still have to do all the normal lifting i had to do before and let me tell you it hurts! My neck is weak and constantly hurts! The pain is not severe but it is their.... Sorry if i wrote so much, i can type really fast! Even though i have weak hands, i can type a lot. I have a feeling that i will be around with this THING for many years, because it is progressing slowly...... I am hoping that i will be one of those ten percent of people that have a plateau or stop in progression, i hope we all do..... Sammantha
 

Sammantha

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Joined
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Messages
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Uni
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Hi Omar, so he we are in the prime of our lives and we feel like we are 80 years old! The funny thing about me is that i look 16! We are at the stage that how we feel and what we look like does not match and that causes a lot of grief for me. I have always been the strong one and now i have to say, i cant do that,,,,,, my body wont let me. I am going to have a very hard time when my body changes drastically or when i need supportive equipment, i guess thats vain but i do not know how i will deal with that. How are you living without a job? Does your family help? What do you do that allows you to freelance? Sorry if i get real personal, that is just the type of person i am..... Sam
 

ltr

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Hi Sammantha - Reading your story makes me very sad, you are so young. I really hope you are not going through this alone, that can be the worst part of any illness. Could you tell me how the Provigil works for you? I have read different things about it, but mostly that the docs don't use it too much for neuromuscular diseases because it isn't very effective. Has it been for you? Are there a lot of side effects? Palpitations or fast heart rate? I too feel like I am dragging weights around and the exhaustion is unbearable. I went back to school to make a better living and this illness hit me in my third year, so it is impossible for me to get back out there the way I am now. Plus, I am a single mother with three kids to take care of. If there is a med that can help with energy I say bring it on!
 

CindyM

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Hi Leslie- In my mind's eye I see you sitting at a desk writing riveting articles about all sorts of interesting topics. Glad to see you are feeling better.

Sam-thanks for sharing your story. What is interesting about ALS is that everybody is so different. Similar, as grampa AL always says, but sunque in each person's own way. Cindy
 

ltr

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ltr said:
Hi Sammantha - Reading your story makes me very sad, you are so young. I really hope you are not going through this alone, that can be the worst part of any illness. Could you tell me how the Provigil works for you? I have read different things about it, but mostly that the docs don't use it too much for neuromuscular diseases because it isn't very effective. Has it been for you? Are there a lot of side effects? Palpitations or fast heart rate? I too feel like I am dragging weights around and the exhaustion is unbearable. I went back to school to make a better living and this illness hit me in my third year, so it is impossible for me to get back out there the way I am now. Plus, I am a single mother with three kids to take care of. If there is a med that can help with energy I say bring it on!

Cindy - Sorry if I misled you, I am much worse than before, not feeling better at all. My post to Sammantha was asking how the Provigil works for her because I am unable to work in any way. If she sees the post I am hoping she can give me some input as to the Provigil and if it is helpful.
 

Jamiet

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Leslie - I have a prescription bottle full of provigil you can have. i didn't like it, but i will mail it to you if you want it? PM me with your address and i'll send it to you if you want it.

Samantha- Our stories are very very very similar. I've had almost the exact same issues as you, just my EMG's have only been a little abnormal. There were no fibs / psw's found, but there was something found. I had a muscle biopsy, it said rare denervated and rare atrophic fibers, but they called it normal..... I have the +5 reflexes, i had the chest/left arm pains for years, lymph nodes for years, i'm 32. i have tongue issues, muscle atrophy, fatigue etc etc. The ALS spec i saw said she is 110% sure it's not ALS, great, but what the hell is up. I think they are missing something. I've got alot of pain too, i take pain medication to make it thru the days, it numbs me and peps me up, its a "fake" way to live, but my days are more enjoyable.

rgds,

jamie
 

Omar

Distinguished member
Joined
Apr 13, 2007
Messages
138
Reason
PALS
Diagnosis
08/2006
Country
BE
State
Belgium
City
Brussels
Hey sam, I guess my ALS progression is slow as well and so far I am not living with my Parents but they are supporting me financially and I am working as a freelance graphic designer beside my MA study.

Omar
 

Sammantha

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Uni
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Newport
Provigil

Provigil cuts off the transmitters that tell you to fall asleep. You will still feel heavy but you will have the gumption to get up and go. Your body will still need to rest but if you are sleepiest during the day time like me you can rest for an hour or so and go go go. I used to rest and fall asleep for hours on end. This also helps if you are soemone who sleeps while driving. You have to be careful and rest though because you will be wide awake and may over do it. The medince is not an amphetamine, so there is no heart papultations or hormone induced side effects. The fatigue will be there but you wont sleep your life away. I hope this helps..Sam
 

ltr

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Thanks Sam, I was anxious to see what you had to say about it. I see my neuro on 8/29, so I will be sure to ask if I can give it a try. I hope it helps!
 
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