Status
Not open for further replies.

k2626

Member
Joined
Sep 2, 2008
Messages
19
Reason
Other
Country
US
State
ca
City
San Francisco
Hi guys I am back. As a reminder I am a 33 yr old female and for 3 months I have had moving bone/joint pain...sometimes it will pulsate one area for an hour, other times it is a sharp jab. Main areas affected have been-ankles, feet, shins (at times), spine, fingers. With the onset of the pain I started to get EXTREME joint cracking everywhere in my body. Now the past month I have been getting little muscle twitches all over my body-my thigh, shoulder, thumb, butt....it will hit one area very quickly, then move to another.

I have had BOAT LOADS of blood work done-all normal. I had an MRI of head and lower spine-normal.

I am so scared, could I have ALS? Does this sound like symptoms? For a year I have been waking up in the middle of the night gasping for air and trying to swallow like I am choking, but have alwasy attributed to GERD>

Please offer me any feedback....
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Wow, your symptoms sound really disturbing ... no wonder you are scared. But it doesn't sound to me at all like ALS. I'm not a medical expert, and I'm sure you will hear from some people on this forum who really know their stuff, but I think they will also say this doesn't sound like ALS.

What are your doctors telling you? They must have some ideas if they have had you take all those tests.

Hang in there. The answer will be found.
BethU
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
I have to agree with Beth: that doesn't sound a thing like ALS. What on earth made you think it was?

Let your docs do their thing and STOP self-diagnosing yourself. It might take them time to tease-out what your underlying condition is . . . but in time . . . they will.

Take care.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I'm with Beth and wright. Doesn't sound like ALS to me.

AL.
 

k2626

Member
Joined
Sep 2, 2008
Messages
19
Reason
Other
Country
US
State
ca
City
San Francisco
Thanks

Hi guys, I cant help but think I have ALS. It started off as pain that moves around my body, sometimes short stabs, other times pulsating. This went on for three months (still going on) with extreme joint cracking. Then I started to get twitches in my right hand at night....now I have little muscle twitches all over my entire body-non stop. I feel like my right hand is a little weak now (though this could be in my head), kinda like when your hand is really cold.

All of my blood work, body scan and mri have been fine which makes me feel all that is left is ALS. I went to see two neuros, they did in office exams only told me I was fine and sent me on my way. They did not even do nerve testing which upsets me, how can they say I am okay without doing this? My GP is going to have me get it done.

I have been in tears and this has consumed my mind.

Does this sound like I could be getting it? THe muscle twitches are all over my body and move around from place to place....just seemes to be getting worse
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
All of my blood work, body scan and mri have been fine which makes me feel all that is left is ALS.

Hi K ... I understand how upset you are, and I really sympathize with your fears ... but the problem is that what you are describing does not sound like ALS.

If the neurologists you've seen were not willing to do the tests you asked for, it was probably because those tests were not appropriate for the symptoms you're describing.

Fortunately, your primary care physician is willing to work with you on finding out what is wrong, and it sounds like that is your best bet in getting a diagnosed. Trust your PCP and keep an open mind.

Good luck!
BethU
 

k2626

Member
Joined
Sep 2, 2008
Messages
19
Reason
Other
Country
US
State
ca
City
San Francisco
Thanks again

Thanks again to all that are responding. Do the pains I describe sound like ALS though? I googled muscle twitching and all I see is ALS..my twitching is nonstop now and moves all over my body.

I just lost my dad to PC and I am so fearful of this as its the last thing me and my family need after my dads traumitic experience. He was diagnosed 3 months ago and we lost him 3 wks ago. I just cant take anymore bad news at this moment in my life

Thank you all for your understanding and for taking the time to write to me. What a great support group...
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
You are now on the verge of getting completely irrational. You just had two neuro's evaluate you and tell you that you don't have ALS, because your symptoms aren't even close to being ALS. You might very well have something happening to you, but in my opinion . . . and again . . . in the opinion of two neuro's and other people on here . . . it isn't due to ALS.

As I said: STOP trying to self-diagnose yourself because you are not qualified to do so. There are a gazillion other things that cause muscles to twitch . . . but unfortunately . . . for whatever reason . . . they don't come-up when you google it.

Go relax and let your physicians do their job.
 

k2626

Member
Joined
Sep 2, 2008
Messages
19
Reason
Other
Country
US
State
ca
City
San Francisco
Thanks for talking me off the "ledge" Wright. I will keep you all posted as I hear more with my results.

Throughout this ordeal with my health issues the past months I have such strong admiration for those diagnosed with challenging diseases and how well many of those handle such diseases. I feel like such a big baby with all of this and admire the strength in others.
 

k2626

Member
Joined
Sep 2, 2008
Messages
19
Reason
Other
Country
US
State
ca
City
San Francisco
Testing

Hi guys, my dr has lined me up for nerve testing tomorrow. I am sorry to keep coming back to this board. It is just so odd that my entire body is twitching non stop everywhere, and these shooting random pains in my body concern me about all of this.

Is there anything I can expect during the testing?
 
Status
Not open for further replies.
Top