I need helpful advice on this please...

Ok basically a few years ago I started having breathing issues where It would feel like i was having trouble breathing full breaths like I had pressure on my chest and that last til now but became alot better then it used to be. A year before this I was having bladder issues that make me use the restroom frequently, some days it will be really bad and others ot would be alot easier to deal with. Well starting 6 months ago I been having weakness in my arms and legs, some days it feels like cap then some days will will feel better. I also will had the other night I was having lower back pain that last 7 to 8 hours after I went to sleep.

Can somebody tell me if this sounds like ALS? I went to the doctor a year ago who sent me to a neuro doctor because I was having weakness issues in legs and eyes (sight went kind of bad over a short time) and I had an MR of my brain and spine which came out fine seeing that I told them I was scared I had MS. I also brought up ALS and he laughed saying he highly doubts it. He told me it could anxiety and went on about that. Well a year later and I been having this weakness happen more frequently and I went to a clinic which tested my blood and said only thing that seems wrong is my Vitamin D level was like a 7 and said this is probably the reason and demanded I take 10,000 UT Vitamin D pills. Can anybody tell me if this sounds like ALS or something different like Vitamin deficiency?

Sorry if there is spelling mistakes, I'm doing this on my phone.

>Can anybody tell me if this sounds like ALS or something different like Vitamin deficiency?

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#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 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 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.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


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Max - Monday, August 18, 2014 12:03:01 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

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bladder issues >>> Bladders are not affected by ALS
weakness in arms and…some days will feel better. >>> ALS never feels better
lower back pain >>> ALS does not have back pain
weakness happen more lately >>> Weakness in ALS never comes and goes
breathing … pressure …became alot better then it used to be. >>> Again, ALS doesn’t come and go

ALID1143: Congratulations. You don’t have ALS.
Not a single symptom you described is ALS
In fact, you might have something exactly the opposite of ALS: tension and anxiety.
Your neuro—a very, very smart and trained specialist who knows ALS—laughed at the idea. So do I.
Frankly, everything you wrote sounds like stress and anxiety.
Go to an anxiety forum and get your support there.

Two pieces of "helpful advice" given.

Thanks for the advice.

Since my post the past two days my arms and legs have been feeling really weak and somewhat of a minor ache. My calfs feel sore when walking and having slightly breathing issues like i need to cough or use my asthma inhaler. I will also like to add I been having muscle tremors in my feet, thighs, mid abdomen and arm. Still don't think this has anything to do with ALS?

arms and legs have been feeling really weak >>> Believe it our not, people with ALS don't feel weak at all, since the sensory nervous system is not involved. In ALS, only the MOTOR neurons are killed off, so while there is no feeling of weakness, the weakness is real.

My calfs feel sore >>> Again, PALS don't feel sore. In ALS, a muscle simply doesn't work.

need to cough or use my asthma inhaler. >>> This is not paralysis.

muscle tremors in my feet, thighs, mid abdomen and arm >>> If your muscles have tremors, you have muscles.

Your back pain could be from a urinary tract infection since you said you had bladder problems. Try drinking cranberry juice and drink lots of water to stay hydrated.

Last night and today my legs have been feeling like crap, almost as if both my legs feel as if they are sore or as if I had did leg day at the gym the night before for the first time. My arms and hand also slightly have the same feeling. I will also like to add it's in my feet too, they have a weird cold feeling to them while also feeling like little needles are touching the top of them.

I know you mentioned muscle twitches/tremors mean your muscle if working but everywhere I read says it's actually common in ALS. I also been noticing sometimes when I yawn part of my neck muscle will cramp up.

Fever is common in ebola. But having a fever doesn't mean you have ebola.
ALS is about failing, not feeling. Throw out all your "feeling" symptoms; they have nothing to do with ALS.
In fact, none of this sounds like ALS.

Do you have any idea of what it could be if it doesn't sound like ALS at all?

Weakness and bone pain are both symptoms of your documented vitamin d deficiency

Nikki J said:

Weakness and bone pain are both symptoms of your documented vitamin d deficiency

Click to expand...

Is muscle twitching a symptom as well? I had two different doctors give opposite answers.

"Do you have any idea of what it could be if it doesn't sound like ALS at all?"

No, this is a Forum for ALS.

Alid1143,
People have politely responded to your questions and in their opinion they said you don't have ALS. So, this might be a dumb question but why are you still on here? Are you waiting for us to change our minds. This is a ALS support group forum. Why are you asking us about other illnesses it could be? We aren't doctors. If you want to just chat with people there are all kind of groups on the internet to do so. Unless you have ALS or your loved one does and you want support I don't see any other reason that you would want or even need to be here. We've told you already what we know. Thank you,

I promised someone that I wouldn't be sarcastic anymore.... Though I didn't promise to be any less sarcastic either.....