I am tired and here is my story

[johnskip]

Hi first of all I fully respect and pray everyday for all the people asssociated with this disease I truly mean that my.name is john I am absolutely.devestated saddened and angered of what im experiencing after beong in tip top.condition for a longtime by being an avid basketball player and weightlifter in the past year I.am 47 I noticed me slowing down with injuries with calves cramping alot muscles pulling all contributing to my age and over use then in the beginning of june I noticed my legs were unusually crampy like they werenot my legs then iI noticed my big strong calf muscles were floppy intead of hard like they always were Icontonued to workout where iI noticed my gait was off and I was walking real slow then I was dozzy and fetloff balanced even feeling a litlle bit lost mentally so I took off a week of working out then when I went back Ihad unusual shortness of breath aftee very lottle exertion even walking up the steps which was unexplainable to me because iI could run 10'miles and play basketball a month before without breathing heavy I said its time to seek.helpanyway I went to 5 neirologists at university of penn and jefferson top hospitals in philadelphia and they all said I dont have als everytime I walked out of the office and was so relieved only to have my symptoms come baxk with muscle twirching all over the body and my biggest complaint shortness of breath along with cague rib and lung pain took 2 emgs of legs fine and right emg fine just had pulmonary function test at penn and failed the respitory muscle part but my mvv was good so they considered that normal 2 weeks later I had another becauae I was not breathing right at jefferson and failed the muscular part again along with the mvv this time all other parts fvc were fine now im waitinf to here back from doc who promised me I dont have als and wrote it down in stone I really hope I dont but I never felt like this in my life im moving like a snail and if even tey ro exeecise for minutes im sore all over along with twitches sorry for long post its been one hell of a summer alot of crying I have 3 woderful children who I adore

 

[Atsugi]

JOHN, thanks for including so many details.
What you wrote has absolutely nothing to do with ALS. Feeling cramps, feeling weak, getting quickly fatigued--none of this is ALS.

In ALS, a muscle stops working. It goes limp. It doesn't feel weak, it just doesn't lift. The only muscle you mentioned that has failed is apparently your lungs, and I've never heard of ALS starting in the lungs. It typically starts with a foot that just won't lift, or a hand that won't move. Sometimes, it start at the top, the tongue and swallowing. Lungs are affected toward the end, just before death, after years of full-body paralysis.

I would trust your doctors and go with their knowledgeable and experienced advice. Good Luck.

 

[Acronyc]

Hi John, I'm sorry for your symptoms but as Atsugi said they don't appear to be ALS. If you've seen five neurologists and have had two EMGs all come out okay, I think you should be very happy that you are in the clear!

It doesn't make your current symptoms any less real or difficult to handle, and as someone who also exercises (or at least used to until three months ago) I know how hard this can be to deal with. I was running 100km ultra marathons in May and now I have difficulty walking 1 kilometer without terrible burning pain and cramping, and I've been twitching non-stop for 10 weeks now. But my neurologists told me the same thing yours did: all signs point away from ALS.

Take heart that you've been given good news that you don't have ALS and I hope that you can get to the bottom of your symptoms and find relief soon. All the best!

 

[johnskip]

Thanks guys for your words of encouragement I really apprecoate it but I just wanted to.add some things first of all im on kolonopin low dose during day and 25 mg of elavil at night for two months I had excessive mucuous coming from nose and some drooling since taking elavil it is not as bad I also.have severe neck pain that radiates in the back of my head and I.also.feel like I cant keep weight on my body I force myself to.eat more than usual and now battling signs of constipation I know respitory onset is ver very rare but me failing the pulmonary function tests scare me im trying to get an intercostal muscle emg because like o said I have constant vague pain in ribs and lungs

 

[johnskip]

And my whole spine hurts

 

[dalvin]

What part of it DOESNT sound like ALS do you not understand. You don't belong here. See your doctor, let him figure it out, that's what you pay him for.

 

[MaxEidswick]

This is an automated response:

#1 - Read the **** STICKIES **** all is revealed there. 99.9% of your questions will be answered in the stickies.


#2 if you think you have a motor neuron issue, see your PCP and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND experienced!

#3 We are not doctors or diagnosticians, but people who are dying from or caring for ALS people who often type w/ 1 finger or their eyes, etc., so replying to anxiety-ridden hypo's is a pita.

#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.

#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.

#6 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.

enough said?

 

[Clearwater AL]

Johnskip... are you a BOT? (computer).

 

[johnskip]

Sorry al I dont undeestand please explain

 

[Kosmoskatten]

Internet bot - Wikipedia, the free encyclopedia

 

[johnskip]

I understand that some of my symptoms dont appear to be als but the only real issue now is my intercostal muscles they got weak some how I dont know how I played basketball.for 35 years 4 days of week but any way 2 pulmonary function tests proved it and me getting out of breath on any kind of exertion this is ridiculous been to 5 neuros nobody can figure it out its got to be serious its affecting me everything I do I have twitching all over my strength is fine with normal emgs but weak intercostal muscles and vague pain in ribs and lungs this cant be good they all look at me becaise im in good shapeand test my strength and say your fine bullshiti

 

[Mediasmart]

John....I'm begging you. Go get some mental health treatments. Honestly, you sound crazy.

 

[affected]

I agree, time to move from neuro to psych help, and change forums too please

 

[johnskip]

Just frustrated

 

[lgelb]

John,
If you have documented suboptimal lung function, perhaps a pulmonologist could suggest a differential. There are adult muscular dystrophies that can arise late in life, but an EMG should have suggested some degree of myopathy. You might also have your electrolytes and other biochem checked if not already done.
But yes, you do appear to be in the wrong place here -- and that's a good thing.