Old 02-09-2010, 10:59 AM #1
rayray123
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Default Would I notice a HUGE difference in a year?

Hi,

I hope someone can jump in here & give me a lil advise.

Last year, Out of nowhere, I basically woke up with widespread muscle pain. I had muscle pain throughout my body. In ALL my limbs. Upper AND lower arms Legs, thighs. My joints hurt too, although it may be the muscles not the actual joints?

It hurt mostly when I applied pressure. Leaning my arm on the window when driving, crossing my legs, standing....Poking at myself, ect........At times it felt crampy, VERY tender, & fatigued. But its not ONE specific Muscle, such as the arm..........Its ALL muscles. After typing, my arm muscles feel fatigued. After blowdrying my hair. When I sleep, the pressure of me agaist the mattress hurt too.

Too make a long story short, I went to Rhematologist. ALL bloodwork, for muscle inflamation, lupus, auto immune diseases were normal & the Dr did not know what it was. Said he didnt think Fibro because I didnt have the tender points.

Went to 2 Nuerologists. One was the director of ALS. He did Upper & Lower EMG & Nerve Conduction tests. They were normal. (thankfully). I was SO concerned w/ ALS and he clearly said, I dont have it.

I had this for 3 mo's last year & it finally went away!

1 month ago, 13 mo's later.......... it came back! Same thing! Its awful! My hands feel stiff, as do my legs and arms. I have extreme tenderness & whatever it is, its back. Feels like my muscles are fatigued again...........

Could this possibly be ALS? Maybe it didnt show last time.

ANY advise, PLEASE!?

Thank you!
 
Old 02-09-2010, 11:36 AM #2
wright
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Default Re: Would I notice a HUGE difference in a year?

NO, that is not even close to being ALS. I'm not sure how you even began to think it was ALS. If the first doc couldn't determine what you had/have, then go to another one. I wish you luck.
 
Old 02-09-2010, 11:54 AM #3
irismarie
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Default Re: Would I notice a HUGE difference in a year?

my foot slapped 9 months ago and now i live in a wheelchair. As siad before, not even close, you lucky person!
 
Old 02-09-2010, 12:14 PM #4
rayray123
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Default Re: Would I notice a HUGE difference in a year?

Hi iris Marie,

Im sorry! Truly sorry for you & have to say thank you for even replying.

Thank You wright as well.

I forgot to mention that i had twitches but I believe last year I had them, before the EMG.

Noone can figure out whats wrong & Im not a hypocondriac, honestly............just feel like elliminating everything else, leaves me with a MND? ALL my Muscles BOTHER me! I dont get much of a break, although I cant understand why it went away for a year. How long does it take to progress? My Dr said Id be paralyzed in a year but certainly, after reading, I find that is not so.

May I ask what makes you think it doesnt sound like ALS?

You are all such caring huming beings!

Does it Always start with "ONE" muscle or can it start with BOTH legs? BOTH arms?

Bless you all!
HUGS!
 
Old 02-09-2010, 12:45 PM #5
halfin
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Default Re: Would I notice a HUGE difference in a year?

ALS normally doesn't involve muscle pain. Since that is your main symptom, ALS doesn't make any sense as a diagnosis. The twitching doesn't mean anything. You say you have eliminated everything else and that leaves MND. Well, you should eliminate MND as well. I'm not sure where that leaves you. Maybe Sherlock Holmes can help: "Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth."
 
Old 02-09-2010, 12:49 PM #6
GlenBrittle
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Default Re: Would I notice a HUGE difference in a year?

Definitely NOT ALS.

ALS sneaks up on you, quietly weakening your muscles , you can not even feel it.

With the pain coming and going - are you having an allergy reaction ?

Glen
 
Old 02-09-2010, 01:32 PM #7
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Default Re: Would I notice a HUGE difference in a year?

I am not a dr. but it doens't sound like ALS.... I would have a rheumo workup again, alot of things don't show in bloodwork
right away.... hopefully it is nothing at all, but alot of autoimmune stuff can take a while to get diagnosed. If you get no where there
try an endocrinoligist. Good luck.....
 
Old 02-09-2010, 01:40 PM #8
rayray123
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Default Re: Would I notice a HUGE difference in a year?

Thank you all for your replies!

I didnt mention that I have Brisk knee reflexes and an absent babinski but again the Dr said it meant Nothing.........

1)Does a clean EMG mean its probably not ALS?

2)Would I need repeat Emg's?

3)Do symptoms start in one limb or both arms, both legs? (Wasnt sure if it meant one limb= one arm, ect?

4) Does the weekness go away even if its 20 minutes or never?

Thx

I know that when you know more about als, it must be frustrating to read from people like me who know nothing & for that, I apologize! I wont be a bother.......ty
 
Old 02-09-2010, 01:54 PM #9
paleshia
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Default Re: Would I notice a HUGE difference in a year?

1.) clean emg=yippee
2.)if the dr. says so
3.) mine started in one lttle hand...couldn't press a door latch and a little more than ten months later, i cannot move that hand at all, i cannot lift that arm to shoulder height, i have foot drop in one leg, and oh yeah..i can't press that same dumb latch with the other hand either now
4.) nope, once a spot was weak, it was weak. although some other muscles do try to join in to get the job done, until they don't work anymore either.
 
Old 02-09-2010, 02:02 PM #10
AndyDJX
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Default Re: Would I notice a HUGE difference in a year?

Rayray--- I don't think you're a hypochondriac; it definitely sounds like you have something going on, but you should not be looking at ALS. As other people have said; ALS typically starts with subtle weakness and progresses to extreme weakness. It also shows up on EMGs.

You have sudden muscle pain all over and a clean EMG. Keep looking to find out what's wrong, but it sounds like you and your doctors can stop looking at ALS.

Best of luck,

Andy
 
Old 02-09-2010, 02:04 PM #11
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Default Re: Would I notice a HUGE difference in a year?

The nice thing about muscle twitches is that they don't have a thing to do with diagnosing ALS (they are not part of the criteria). So, twitches are a good thing because there are so many things that can cause them.

Your muscle pain could be caused by something going awry with your sensory neurons vice your motor neurons. If this is the case, this points away from ALS as well.

While you are experiencing this flare-up, I'd get in to see the doctor again. It most likely isn't ALS that's causing your problems but it's not to say you don't have something else.

Zaphoon

Best of luck!
 
Old 02-09-2010, 02:34 PM #12
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Default Re: Would I notice a HUGE difference in a year?

Have you had a C-spine MRI?
 
Old 02-12-2010, 09:31 AM #13
rayray123
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Default Re: Would I notice a HUGE difference in a year?

Wow, You all are SO special! I read through these posts & I wanna hug Each one of you! (really).

I appreciate all your feedback. Thank you,

I was in HORRID pain & had Such extensive weekness Wed, then yesturday it led up a bit, enough for me to get housework done, so Im trying to convince myself that ALS doesnt feel better, (as some of you said) even for a few hours.

I dont know what I have but its really strange! My hands feel so stiff & my arm muscles feel so heavy & fatigued but then It'll let up for a "lil" bit. My legs & arms are so tender.........

Soooo Darn strange,

Thx for being so caring,
 
Old 02-14-2010, 03:43 PM #14
Marjorie R. Wilcox
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Default Re: Would I notice a HUGE difference in a year?

Do you work out too much and just have aches and pains from it?
Could you be dehydrated? If you do exercise you must drink a lot before and afterwards.
Even if you are a couch potato you must hydrate your body. Please try drinking plenty of water and see if it helps. Regards.
 
Old 02-14-2010, 04:45 PM #15
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Default Re: Would I notice a HUGE difference in a year?

hi, i'm a new member, and your symptoms sound similar to mine, i have had fibromyalgia(yuppie flu) for 3 years now although i did have 1 positive ANA result and 3 negative results, I have days af numbness in my hands back and shoulder aches and pains all over my body, tiredness and fatigue, i also have days where i cannot raises my arms above my head, if i do anything that takes a lot of time and energy ie gardening then i am usually ill for about 3 days afterwards due to exhaustion, its possible they said i could have Raynuards syndrome and also borderline Lupus, but my rheumotologist has given me an injection of steriods that have worked wonderful. i am now going to have anti malaria tablets to see if that helps, i have twitching, problems with strength, have difficulty with buttons, opening jars. carrying bags etc,My hips hurt and there is not a day go by where ther is not a worry of god. whats wrong with me, i hope you get sorted out, I had acheck up with a Physio and a fitness trainer who both said a healthy diet , lots of water and gentle exercice, would be of benefit , but if tired just rest and do not over do it, I hope you get sorted out soon, beverley
 
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