It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Amyotrophic Lateral Sclerosis (ALS) Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 06-24-2006, 04:46 PM   #1
Newbie
(female)
 
Join Date: Jun 2006
Location: Thorndale, Tx
Posts: 7
BethLackey HB User
Is Pain a symptom of ALS

I am a 55 year old female - I began having problems in my feet - just VERY sore feet since June 2005. Then Fasciculations in my calves at night or when I'm sitting. Then I developed shoulder pain that has never gone away. My left leg is visibly smaller than my right - but both legs are smaller than they used to be, in the calf. My left leg has a dent or indentation in the calf...and it's spreading up the inside calf muscle. I have indiscriminate pains that feel like someone is poking me hard in weird places - like two inches down from my shoulder...or an inch above my wrist - or in my calf - these pains are NOT in joints. Also if I stroke the outside of my upper arm it feels like it's a burning or sore feeling. After pain episodes I am very tired...fatigued. I also feel like my throat gets tired if I have to raise my voice - like if I'm in a restaurant and I have to talk loud to be heard above the background noise. I have had 2 MRI's, and EMG, and LOTS of bloodwork - everything comes out normal according to my neurologist. My questions are:

1) is there pain like this with ALS
2) is muscle weakness considered getting fatigued, or is there definite "strength" weakness first?

I am worried sick...I go back to the dr. July 11th...he diagnosed me with benign fascics in May...but why do I have to go back? I think he's waiting for more symptoms...or visual atrophy...I have an Aunt with MS and was hoping this was MS (simply because the thought of als is terrifying) - but I don't see any fascics with the symptoms of MS.

 
Sponsors Lightbulb
   
Old 06-25-2006, 04:48 AM   #2
Senior Member
(female)
 
Join Date: Jun 2006
Location: minnesota
Posts: 126
Dan's Mom HB User
Re: Is Pain a symptom of ALS

Beth,

My husband was diagnosed with ALS in 1996. He has never had pain really but he has had a lot of fatigue. Sometimes Dr's miss somethng that is associated with the shoulder pain. The shoulder pain is often referred pain. I knew someone who had an ectopic pregnancy and had shoulder pain. My son had leukemia and he had shoulder pain. They treated him for a shoulder injury but he didnt have a shoulder injury. Have you had all the EMG's etc? ALS is often diagnosed when everything else is eliminated as there is no realy was to test for it, except with the muscle stimulator thing. Good luck. Keep pushing until they find out what it is.

 
Old 06-25-2006, 04:51 AM   #3
Senior Member
(female)
 
Join Date: Jun 2006
Location: minnesota
Posts: 126
Dan's Mom HB User
Re: Is Pain a symptom of ALS

Beth,

In addition, the fatigue comes from the nerves misfiring all the time. Thats is what the fasics are, that takes energy.

 
Old 06-25-2006, 10:06 PM   #4
Newbie
(female)
 
Join Date: Jun 2006
Location: Thorndale, Tx
Posts: 7
BethLackey HB User
Re: Is Pain a symptom of ALS

Thanks for that information - I am so sorry to hear about your husband...what an amazing couple you two are to be fighting that so long. I was reading your post to someone else and my heart just goes out to both of you. The one thing you said that rang a bell with me was that you said your husband had been on antidepressants - and I was for 3 weeks - then one night I felt my "brains jumble" (seizure?)...so I got off of them...and I think three months later is when I started having small symptoms...I am wondering if maybe I have MS instead of ALS. I would give anything for a diagnosis...it's so slow getting one.
If anyone else is out there that can answer my second question - about weakness vs. fatigue - let me know...

 
Old 06-27-2006, 03:43 AM   #5
Senior Member
(female)
 
Join Date: Jun 2006
Location: minnesota
Posts: 126
Dan's Mom HB User
Re: Is Pain a symptom of ALS

Beth,

He had definite weakness. His strength ebbed away. In november, before he was diagnosed, he built a birdhouse that was really heavy and stood on a post that was about 12 feet high. He put it in frozen ground all by himself. He was diagnosed in March of the following year. In may, we went to move his canoe from the yard and he couldn't pick it up. I think he had the fatigue before we noticed the weakness. By mid 96, he was having problems with balance andwould fall flat on his face as he didnt have the strenght to catch hinself. He had the test, I think the EMG, where they use elctrical stimulation, EMG? He said that was painful. I didn't notice any wasting immediately though. The other wierd thing.. when they test your knee for reflexes.. well they did that with him and it looked like something out of a move.. his lower leg came up as if he were going to kick someone, like in an exaggerated manner.. apparently that is common... My friends dtr had lupus and she could hardley walk before they diagnosed her. She had these wierd things on her skin that appeared before your eyes.. Have they tested you for Lupus? That can have strange symptoms. Most things would be better than having a diagnosis of ALS. It isusually diagnosed by ruling out other things. He also had a spinal tap. With MS, the coating around the nerves (myelin sheath) is deteriorating. With ALS itself, the myelin sheath remains in tact but the nerve cells under the myelin sheath die, like broken telephone wires. We were also told that ALS travels in a certain pattern. Unless it is the bulbar type, which affects the breathing/swalllowing first, it will travel down one side of the body and then up the other side. I'm sure it has to be torturous waiting for this diagnosis. Take care Beth.

 
Old 06-28-2006, 05:57 PM   #6
Newbie
(female)
 
Join Date: Jun 2006
Location: Thorndale, Tx
Posts: 7
BethLackey HB User
Re: Is Pain a symptom of ALS

That is so sad - it must be so hard on you to watch that happen...and so so hard for him to have to "live" it. I am so disappointed in my dr. Yesterday he told me that my symptoms were "anxiety driven" and that I needed to get a good book to read - stay off the internet and stop stressing out. Well, I would really like to - but when I have these symptoms do I just ignore them and say they are anxiety? I told him the symptoms were real - I have real pain...real fasciculations - real fatigue - and my left leg is smaller - and he said that he knew it was real - that real anxiety can cause heart attacks, strokes, etc. - and they are all real - and that I needed to work on the anxiety. He said he would welcome and cooperate with a second opinion...I just don't know if I should just try to ignore these symptoms until they increase or go away - I hate to go in circles in dr.'s offices...I don't want to spend my time that way...Maybe I should just do nothing and see if the symptoms go away or get worse. It must be difficult being a neurologist - and diagnosing these things..!!

 
Old 06-29-2006, 03:29 AM   #7
Senior Member
(female)
 
Join Date: Jun 2006
Location: minnesota
Posts: 126
Dan's Mom HB User
Re: Is Pain a symptom of ALS

Becky,

If you are not satisfied with his answer, I would see someone else. Have you been checked for parkinsons?

 
Old 06-29-2006, 12:26 PM   #8
Senior Member
(female)
 
Join Date: May 2005
Posts: 181
vo-5 HB User
Re: Is Pain a symptom of ALS

Quote:
Originally Posted by BethLackey
That is so sad - it must be so hard on you to watch that happen...and so so hard for him to have to "live" it. I am so disappointed in my dr. Yesterday he told me that my symptoms were "anxiety driven" and that I needed to get a good book to read - stay off the internet and stop stressing out. Well, I would really like to - but when I have these symptoms do I just ignore them and say they are anxiety? I told him the symptoms were real - I have real pain...real fasciculations - real fatigue - and my left leg is smaller - and he said that he knew it was real - that real anxiety can cause heart attacks, strokes, etc. - and they are all real - and that I needed to work on the anxiety. He said he would welcome and cooperate with a second opinion...I just don't know if I should just try to ignore these symptoms until they increase or go away - I hate to go in circles in dr.'s offices...I don't want to spend my time that way...Maybe I should just do nothing and see if the symptoms go away or get worse. It must be difficult being a neurologist - and diagnosing these things..!!
one dr told this to my mother 4 mos. before she died from ALS, another dr, dianosed her correctly 2 mos. b4 she died, seek another opinion.

 
Old 06-29-2006, 06:22 PM   #9
Newbie
(female)
 
Join Date: Jun 2006
Location: Thorndale, Tx
Posts: 7
BethLackey HB User
Re: Is Pain a symptom of ALS

I'm not sure what I was tested for - with 2 MRI's, and EMG, ANA Bloodwork and other bloodwork - I think he was being thorough trying to rule out obvious things - nothing showed up.
Today I felt just a weakness in my legs, like my knees might buckle, but they didn't...and I even did a few knee bends to see if I could. I also still have the pain like someone is poking me in places - not in joints. He did rule out lupus, though...and I guess he ruled out everything if he's telling me it's aniexty driven...I am not falling, tripping...I believe I am having difficulty talking...but it's hard to say cause I have had Bell's Palsy for two years...but I really think it's harder now...
I think I will seek a second opinion...maybe I'll go to the Mayo Clinic...I'm so scared...

 
Old 06-29-2006, 06:23 PM   #10
Newbie
(female)
 
Join Date: Jun 2006
Location: Thorndale, Tx
Posts: 7
BethLackey HB User
Re: Is Pain a symptom of ALS

I'm not sure what I was tested for - with 2 MRI's, and EMG, ANA Bloodwork and other bloodwork - I think he was being thorough trying to rule out obvious things - nothing showed up.
Today I felt just a weakness in my legs, like my knees might buckle, but they didn't...and I even did a few knee bends to see if I could. I also still have the pain like someone is poking me in places - not in joints. He did rule out lupus, though...and I guess he ruled out everything if he's telling me it's aniexty driven...I am not falling, tripping...I believe I am having difficulty talking...but it's hard to say cause I have had Bell's Palsy for two years...but I really think it's harder now...
I think I will seek a second opinion...maybe I'll go to the Mayo Clinic...I'm so scared...

 
Old 06-30-2006, 09:50 AM   #11
Senior Member
(female)
 
Join Date: Jun 2006
Location: minnesota
Posts: 126
Dan's Mom HB User
Re: Is Pain a symptom of ALS

Beth,

That is probably a good idea, to go to Mayo. Is this part of your Bell's Palsey? Like with Polio, people get post polio syndrome. My mother in law has had that for a while. When she first talked to the Dr, he poo poed her because at that time, they didn't recognize post polio. Now they do. I hope you get the answers you need.

 
Old 07-05-2006, 07:21 PM   #12
Newbie
(female)
 
Join Date: Jul 2006
Location: pei canada
Posts: 3
meljon HB User
Re: Is Pain a symptom of ALS

what do you mean by bulbar tye? My brother in law's swallowing and breathing are causing alot of discomfort now. Is this a type that moves quickly? There is quite a difference in him the past couple of months. I cant imagine him being here next year, and some are 2-3 years?

 
Old 07-06-2006, 05:50 AM   #13
Senior Member
(female)
 
Join Date: Jun 2006
Location: minnesota
Posts: 126
Dan's Mom HB User
Re: Is Pain a symptom of ALS

With some people, their bulbar region, the swallowing, breathing , speaking part, if affected first, severely. I have met people who have not been able to speak a word but could walk fine. Of course, a person can live w/o walking been when your breathing, swallowing are involved, thats a differnt story. Bulbar type means that these areas were affected first. A better way to phrase it is, that the bulbar region is involved. Most people's disease will start down on side of the body and travel up the other, walking and things are most affected first. \Peace

 
Old 08-27-2006, 03:02 PM   #14
Newbie
(female)
 
Join Date: Aug 2006
Location: perthshire scotland
Posts: 3
shygirl59 HB User
Re: Is Pain a symptom of ALS

Pain is not usually associated with ALS. Try not to worry yourself into a state.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
As if pain wasn't bad enough, what causes excessive saliva? Mich5 TMJ Disorder -TemporoMandibular Joint 3 12-01-2007 09:51 AM
fibromyalgia and tooth pain smithp68 Bell's Palsy 5 11-02-2007 01:43 PM
Symptom Information ~ Pain? Amy26 Fibromyalgia 19 10-09-2007 08:23 AM
Pain following a BM JesseA Cancer: Colon 16 08-25-2007 05:34 PM
pain and ms zorm Multiple Sclerosis 8 01-02-2007 12:59 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Celebrex Klonopin
Lasix
Lexapro
Lipitor
  Morphine
Paxil
Potassium
Wellbutrin
Xanax




TOP THANKED CONTRIBUTORS



anxiousme (10), Jenny1267 (7), Babernethy (1), Regis (1), JohnWM (1), chasethetale (1), motionstorm (1), Ate2manylymes (1), ponytaildave (1), Deborah07 (1)

Site Wide Totals

teteri66 (1180), MSJayhawk (1006), Apollo123 (906), Titchou (852), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 12:21 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!