Status
Not open for further replies.

BoxersRule

Active member
Joined
Feb 3, 2008
Messages
37
Reason
Learn about ALS
Country
US
State
al
City
birmingham
I really hate being a burden here- I am making myself sooo sick and anxious I cant even concentrate on my baby that is about to be born in 6 1/2 weeks. I know I have been told by numerous people here my story does not sound like ALS but it is REALLY hard to believe my neuro and get it out of my head. Ive sat this way for 4 months now and I am exhaustedc from worry. I have NEVER been so sick from worry.
4 months of widespread fasciculations. (although my neuro could NOT get any to fire @ the time of my evalulation, she believed in my descriptions). I really dont have any spots that are hot/constant. Infact once I get settled they stop or if I am doing things they stop, or if I look for them they STOP! I had a normal neuro eval, strength test, reflex, coordination etc. all normal and great 2 1/2weeks ago. She gave me the stern diagnosed of bfs.
Through this whole process probably back through March- I've complained of off and on shoulder discomfort (and when it does happen, I have percieved weakness). When I saw my neuro she saw NO WEAKNESS. I was great w/ the diagnosed until my shoulder started bothering me again. I have lost no real strength and I find the pain comes and goes..but when I start focusing on it..I have the percieved weakness. I am at my wits end, I am making my self soo sick to my stomach with worry- constant about my left arm. If a UMN or LMN was present at the time of eval wouldn't I have had strength problems and increased or decreased reflexes?
I know I am a HUGE HYPERCHONDRIAC and I HAVE BAD GENERALIZED ANXIETY disorder. The sad part is... I cant take any meds for it right now b/c Im pregnant. I just sit home and dwell on my problems. (or make believe problems, whatever they are). I have stared at my shoulder and bicept constantly and no fasciculations that are constant- just my typical sporadic ones Ive had 4 months now..with a HUGEEEEEEEEE remission from 18 months ago when I first experienced this mess.
I prob wont get any answers with this post b/c I am such a mess and annoying- I just want to prepare for my baby and not think about this anymore- I keep coming back looking for I dont know what. NUMEROUS of you have told me "this is not als" etc..and even my doc "cheif of neurophysiology". So why cant i accept it?
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
Go back and read our PM's (read what other people on here have told you, too) and give your neuro a call. I'm sure she would be more than willing to talk. I think because of your anxiety, you simply need constant reassurance.
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
Something very simple:

Life is 10% what you make it and 90% how you take it.

You've had numerous people and professionals tell you it isn't ALS yet you continue to worry so what will another dozen or hundred due to stop that? Nothing. You choose to worry. If you don't like the way that is making you feel then choose to stop. Before you make the statement that it isn't that easy look at the group you're posting to. Talk a step back, take a deep breath and relax. The world keeps spinning whether you worry about it or not.
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Well you do sound a bit of an anxious mess, but I would think those pregnancy hormones are exacerbating all of your anxiety so don't be so hard on yourself. Try some self talk re: "I have benign fasciculations and I do not have ALS". You have a sore shoulder, but in all likelihood that is just what it is a sore shoulder. The shoulder is one place in the body that suffers over use frequently--many people have minor rotator cuff injuries. Since you can't take any anxiolitic meds due to your pregnancy, is there a support group around that you could attend? Just venting regularly to someone other than family should really help. And stop staring at your shoulder. Positive thinking is the route to be on right now--for you and the baby. Perhaps you could substitute a walk outside everytime you have some negative thinking? Get those endorphins going kiddo!
Laurel
 

BoxersRule

Active member
Joined
Feb 3, 2008
Messages
37
Reason
Learn about ALS
Country
US
State
al
City
birmingham
Thanks All

I am sorry. I apologize. I do feel like the most selfish person in the world when I come here expressing my scary concerns and fear when I have been cleared. I apologize deeply. It is NOT my nature. Of all things I am a hospice nurse. Amazing huh? I am going to a therapist- I just think it takes time. Infact she is going to be mad @ me for seeing a neurologist as I promised I wouldn't and overcome my anxiety w/ other ways, but.. I thought it would me past all this concern.
Thank you sooo much and my love and prayers go out to all of you. I won't post again.
I've got to get a grip. I see it myself. Its destroying me..and Ive been given a clean bill of health I should be thankful and not pestering.

God Bless you all ...again. I am sorry.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
you said you started taking suppliments and the twitching more or less stopped, from what you have said in your posts you started with the twitchings about the time you got pregnant. does that not tell you something?. you have anxiety, thats it.
why have you been so anxious during your pregnancy? are you subconciously worried about the baby? these are questions you need to ask yourself.
you dont sound like you have als in the slightest, you are ok. however i am more conscerned about your baby, all the anxiety and stress wont be doing him/her any good.
think of your baby not yourself, spend the next 6weeks chilling,relaxing. you are about to go through one of lifes amazing gifts,giving birth to another little human.
take care.
caroline
 

PDaddy

Distinguished member
Joined
Jan 8, 2008
Messages
264
Diagnosis
04/2008
Country
US
State
CA
City
Claremont
Hi Dee Dee,

These people know what they are talking about (I never do!) so take care, your baby will need you soon!
 

BoxersRule

Active member
Joined
Feb 3, 2008
Messages
37
Reason
Learn about ALS
Country
US
State
al
City
birmingham
PDaddy

Dont sell yourself short and I love your blog page. In my prayers.
 

Angie679

Active member
Joined
Dec 29, 2007
Messages
33
Reason
Loved one DX
Country
US
State
MA
City
Boxford
Just wanted to add my 2 cents to you regarding fasics. I don't know if all ALS is like this or not, but just recently I visited my 79 year old mother in law who was diagnosed with ALS last June and her fasics are quite different than mine (which like yourself, I've been a wreck for the past 9 months). She also started with weakness in her foot/leg so that she is not able to put any weight on it without falling. Also, her fasics are constant. I watched while her upper arm twitch pretty much non-stop for a long time. She says that's how it has been for her for awhile. It starts in one area and stays for quite awhile. Now I don't know if this is typical, but it seems to make sense that random twitches (one here and one there) would be caused by stress/anxiety and not what is experienced with a disease like ALS. I am no expert, but what I have heard consistently on this site is without true weakness, ALS is not a consideration. You have your young age on your side and the fact that ALS is still considered rare. I know what worry can do; I know what it is doing to me. Try to relax and think about your many happy years ahead of you with your little one. God Bless.
Angie
 

BoxersRule

Active member
Joined
Feb 3, 2008
Messages
37
Reason
Learn about ALS
Country
US
State
al
City
birmingham
Ty

Angie, God Bless. I just saw your reply after writing my departure post. I need a break from forums. From what I have gathered off here and my neuro the fascics you describe are yes, what most have w/ als. (not the hit n runs that I have that never stay constant in a spot) seems just like overactive nerves to me...
I will pray for you that you will have the strength to over come this.
Its hard..but it can be done.

I tell myself ALLLL These people, a handful of GP's and my NEURO cant all be wrong ;)

Bye for now.
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
Dear BoxersRule:

See an ALS speciality facility at a university hospital. Even if your insurance does not cover the visit, peace of mind has no price tag. This way you will enjoy your new baby and the anxiety will cease.

Will pray for you to make the "right" decision and get that appointment.

God bless you.

Patty
 

comfortable with ALS

Distinguished member
Joined
Sep 24, 2007
Messages
111
Reason
Other
Diagnosis
n/a
Country
US
State
mi
City
st.clair shores
This is Absolutely not Jenny.. I had my baby Feb. 11, 2008, but since you are so negative and want to be rude and disheartening, you asked if it was me...
By the way Lou for your info I was at my neuro yesterday and he thinks I have the possible early stages of a MND and is sending me for a another emg with another doctor. My reflexes are 4 Plus on the left and 2 Plus on the right. So I guess I had good reason to be scared. Dr. Vocchi and Dr. Newman both saw my tongue twitch. Be careful when you are being thoughtless. Jenny
 

boxer22

Active member
Joined
Jun 2, 2007
Messages
83
Reason
Learn about ALS
Country
US
State
nc
City
raleigh
Is this Jenny?


And if it is, last time i checked your here for the same reason, right? We all are. So why all the smart alec comments toward jenny?
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
jenny

first of all congratulations on the birth of your baby in febuary.
i am so very sorry to hear your neuro now thinks you may have mnd, with your new baby you must be out of your mind with worry.
you are in my thoughts and prayers and there are plenty of us on the forum who do not judge and are willing to support you any way we can.
god bless.
caroline:-D
 
Status
Not open for further replies.
Top