Status
Not open for further replies.

lovemy6

Member
Joined
Sep 20, 2012
Messages
11
Country
US
State
nj
City
j
Hi everyone. I hope everyone is well.....I joined tonight because of some terrifying syptoms I've been experiencing....I guess I am trying to find some comfort in the words of you all because I have nobody to talk to about what I've been experiencing. First of all I'm a 33 yr old mom of 4 and stepmom to 2 so busy and im so depressed now that im not functional. I guess now that I've thought back i have been having a lot of muscle pain for months.I noticed pain in my shoulders whenever I would reach for something and I've noticed my breathing has been more and more labored over the past 6 months. Then I started noticing about 2 wks ago my body felt very weak mostly in my arms shoulders and hands on both sides. I can still lift and open I just feel like I need to put real effort into it....now its all day and night not really going away but moving around from time to time. Including my legs now too. My hands especially my right is in pain and has been tingly. I'm going crazy constantly checking my strength, crying, and freking put. I keep thinking my speech is cha ging and that my face as well feela tired. I have an appt w a neuro next week...I can't see how I'm gonna make it through this waiting to find out that I have ALS. Any input would be much appreciated. God bless u all
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,527
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
I am so sorry that you are worried and scared. But, there are tons of things it could be other then ALS that can be easily be controlled. ALS is extremely rare. Try to distract yourself if you can by staying busy until you see your neuro. You are going to be just fine. I will add you to my prayer list. Keep us posted as to what your find out. Now go take a nice relaxing hot bath and put on some music that calms you. Then go try to get some sleep. If you can't get right to sleep pray until you fall asleep. Hugs, Kim
 

lovemy6

Member
Joined
Sep 20, 2012
Messages
11
Country
US
State
nj
City
j
Thank you for your response Kim. It helps to know there are people out there who care :)
 

Alyoop

Very helpful member
Joined
Jul 5, 2010
Messages
1,796
Reason
DX UMND/PLS
Country
NZ
State
NZ
City
NZ
You have not mentioned, what your doctors are thinking, what tests you have done, and why you have decided you might have ALS. Nothing you mention sounds like ALS?
 

lovemy6

Member
Joined
Sep 20, 2012
Messages
11
Country
US
State
nj
City
j
Hi Alyoop...I love ur name
I have had an mri already, came back clear w just a chronic sinus condition, a million blood tests which I am waiting for some results that ill get next week...others I had back in april came back at the time + for mono but retested 2 months later cleared...I don't know what has brought me to the conclusion of als except that I.went from weakness in my arms twice in ywo weeks to weekness everywhere that is getting worse. I obviously have anxiety but not till after tgis all started. My face feeling week is very freaky too...thank you for taking the time out to answer me your input is more then appreciated.
 

momofsixkids60

Distinguished member
Joined
Sep 25, 2010
Messages
314
Diagnosis
06/2011
Country
US
State
in the
City
somewhere
As Aly said, what led you to believe you have ALS? Ting ling is sen sory and not a symp tom. Mu scle pa in usually occurs later with pro gre ssion as the mu scle is dy ing. ALS limb on set starts in one limb distally. As in my case, and others, it started in my right foot and moved towards my hip. Then it started in my left arm with the grip and moved to the shoulder.

Please do not try to do stren gth te sts on yourself; leave this for the doc tors. Also, take a deep breath and relax. Your symp toms don't sound like ALS and there are so many things it could be. With the ting ling and shoulder pain, it may be something as simple as a pin ched ner ve in your neck. You may want to ask for some an xi ety me ds. Take the time and read the stickies and specifically a post by notme on per ceiv ed wea k ness.

Good luck to you,
 

momofsixkids60

Distinguished member
Joined
Sep 25, 2010
Messages
314
Diagnosis
06/2011
Country
US
State
in the
City
somewhere
You posted as I was voicing my post. Wea k ness as fast as yours (2week per i od) points away from ALS.
 

sadiemae

Extremely helpful member
Joined
Sep 20, 2009
Messages
2,527
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
I agree with the others. Symptoms on both sides point away from ALS. So does your age. Stay Calm.
 

vzandt

Senior member
Joined
Nov 12, 2011
Messages
582
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
N.H.
City
Noneknown
Depression can cause all those symptoms. Ir really doesn't sound like als
 

lovemy6

Member
Joined
Sep 20, 2012
Messages
11
Country
US
State
nj
City
j
Thank you all so much for taking the time..I just don't know where this all came from so quickly. I want you all to be right but I do have twitching that is getting worse, my wrists definatly have atrophy, I feel as if my face looks more drawn as we'll, my hands, are so unsteadyand strange feeling.I keep feeling like I'm going to gag and I have tightness in my throat. I think I had weakness for a while but it was slight and I was attributing it to mono. It has gotten so bad so quick. Its all so scary.
 

lovemy6

Member
Joined
Sep 20, 2012
Messages
11
Country
US
State
nj
City
j
I did read thebdifference between clinical and precieved weakness but doesn't precieved work its way to clinical....I feel ill be at that point soon.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,602
Reason
PALS
Country
US
State
MA
City
Southborough
No, perceived weakness is not "real", clinical weakness is...

I'm assuming as you're in a known area (NJ) for Lyme disease that you've been thoroughly tested? If you haven't had the Western Blot test, I would recommend it... and make sure they give you the results for all the "bands"... evidently there's differing opinions as to the limited ones they count as positive.
 

lovemy6

Member
Joined
Sep 20, 2012
Messages
11
Country
US
State
nj
City
j
I have been tested for lymes but no results yet...although my dr doesn't thinl it could be that bc I was on antibiotics when this all got worse. I have bren to the dr so many times over the past year for just not feeling myself. I even went bc my breathing had been getting so labored I was put on an inhaleer but its just not helping.I've always had shortness of breath but it has gotten to the point where I feel like someone is sitting on my chest or I can't even talk. Thinking back I have had the weakness oand other small things that I never put together until this weakness and tightening hit all my limbs and hands at once. I know your not drs but ypur input is valuable to me bc besides you all I have nobody to confide in. I thank you
 

momofsixkids60

Distinguished member
Joined
Sep 25, 2010
Messages
314
Diagnosis
06/2011
Country
US
State
in the
City
somewhere
If I'm not mistaken, lymes can often take a long time to treat. But putting that aside, adult mono is horrible. I had a friend who it took months to di ag nose and over 18 months to get her back to heal th. I really think you need to go back to your GP for some an xi ety meds. Also speaking with a psy chol o gist also may help. You will see the neur o this coming week; its not that far away.
 

momofsixkids60

Distinguished member
Joined
Sep 25, 2010
Messages
314
Diagnosis
06/2011
Country
US
State
in the
City
somewhere
My post went to mod land. Please check for it later.


So sorry, David.
 
Status
Not open for further replies.
Top