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ECpara

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Aches, pain, tenderness.......yes my husband has that after three plus years living with this disease. He's lost almost all muscle in his neck, can no longer hold up his head and is in a lot of pain with and without his cervical collar; and pain in his shoulders where all muscle is gone, the bones protrude at sharp angles. I hope you're getting the picture. What you complain of doesn't carry any possibility of ALS. Your "rhumey" might be right prescribing you meds for your aches and pains. Listen to him.
 

Thelights

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A brief update .
I have to wait until july 28th to see rhumatologist.
i recently went away for 5 days but was and still am plagued with symptoms.
I mentioned in a previous post that i felt like i was on the verge of cramping. I still have that pain although i havnet had a hard cramp .

I am not clinically weak . However i can definitley tell the difference as just picking up a simple novel when i expected it to feel light , felt heavy (cups , plates)
both my shoulders are tweaking like a repetitive inhury and feel fatigued. For example i would be lying on bed eating a packet of chips and the motion of putting my hand in the packet tweaks either shoulder with pain.

The arches of my feet are tender when i stand and , when i was walking around melbourne city (fatigued even in the morning) my left big toe has sharp shooting pains every step.

I find it hard to feel comfortable in most situations . Standing for a long time i have to sit down . I even have issues/ pains when sitting or lying down.

The faciculations body wide still persist.
My hands shake badly for example holding a hot potatoe chip today my hand was all over the shop.

I went to the beach yesterday with a friend for a brief walk
*my mother tells me to go out , but i am reluctant as im also in pain* and when i came back from the walk to my friends house my hands were cold and i was having difficulty opening both hands quickly whereas my friend had no issues.

Bending my head forward slightly in work today fatigied my neck pretty quickly and im under the impression its shoulder related.

My tongue has been aching aswell.

I went to have my blood pressure checked today and it is on the low side .

I also recovering from a 3rd cold since this has been happening since feb .

Now this sounds wacky but did any of you notice higjtened sensitivity of the ulnar nerve (funny elbow area), as i find it is much more sensitive wheny elbows are on the table. (Both arms)

As of yesterday i have beem having icepick headaches in the back right hand side of my head occasionaly .

I should mention that the weakness has not got better since that day in the gym. As mentioned before it feels as though it is progressivley getting worse.

Cheers
 

affected

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Wonderfully you have NO signs of ALS, not a single one.

Please understand that we make it clear in the sticky, that this is not a general health forum. We are dealing with the reality of terminal illness here. You have asked, and you have made lots of long posts and been very politely told by different knowledgeable members that nothing matches ALS. This means you need to move on. What great news for you!

All the best working with your doctors to solve your issues. Go back and tell your doctor how anxious you are so this can be treated too.
 

GilWest

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It sounds as if you might need some in-patient psychiatric care...

Do you really want ALS? If so, you can have my mom's...
 

Thelights

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Im guessing that was probably rhetoric Gil but ill reply any way.

Im embarrased that you would suggest that . Whilst i do have O.C.D , The physical symptoms i have are very real.

I have progressive weakness in my whole body specifically my left hand that has not got better since feb . During march the facics presented themselves and shakiness and im gradually finding more things going wrong (i have to use a tennis ball on both arches of my feet as they are in pain/feelse like cramping). I havent had a feel better day since my last gym session early march.....

The gp cant do anything for me"her words" and going to a specialist takes time. Time in which im freaking out as i feel worse day by day.
I have another month to wait and even then im skeptical it's rhumatic.

So no i don't want your mothers disease, of course not.

All i can do now is wait until the next quack sees me .
Im genrerally fatalistic by nature . if it does come out that i have als ,it wont be a case of "i told you so"as the loss of face will still be on me either way.

So in relation to your question i would love to be ailment free , function normally and regain the ripped muscular body i had 5-6 months ago .
 

Nuts

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We don't doubt that your physical symptoms are real, but stress can induce a whole host of physical symptoms. If they are not caused by stress, then you have another problem that can not be addressed on an ALS forum. Your list does not sound like ALS at all, so this is not the appropriate site for you to seek support. People here are dealing with unimaginable loss every day, loss that only ends in death. We tend to get a bit testy when people who've been told that their symptoms sound nothing like ALS continue to insist upon posting.

BTW, the pain in your feet sounds like plantar faciitis. I have that AND idopathic neuropathy, which causes numbness and weakness in my legs. I also have painful muscles in my legs that only regular stretching and exercise helps. Then there are complications of back issues... I think you see where I'm going. You could have multiple things going on. What you do NOT have is ALS. You are chasing the wrong rabbit and will only hurt your credibilty with your doctors if you go in inisisting that you do. Give your docs your symptoms and let them diagnose. Yes, it can be a long and frustrating process, especially if more than one problem is present, but at least you will LIVE through it.

No need to respond. Please go in peace, and I wish you luck in dealing with your health issues.
 

Atsugi

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LIGHTS: You received very good replies assuring you that you don't have ALS, but I'd like to point out two things that are equally important for you to know.

First, you're wasting your time here. You could be looking for answers elsewhere. We're not doctors and won't pretend to diagnose your symptoms. Every minute you spend here puts you further away from understanding your problem and getting the comfort you need.

Second, I'd like you to understand just who we are, so you understand the consequences of wasting our time. Two of the people who responded to you are dying of ALS, and the remainder are caring for their spouses who are dying of ALS. People who are quad-paralyzed might be using a foot-operated mouse or a head-mounted pointing device to read and write. My own wife could only communicate by blinking. We all want to help people who might have ALS, but you don't.

Being a caretaker for an ALS patient is the hardest, most tiring job I've ever had (and I served 20 years in the military overseas or at sea). Our loved ones can hardly breathe on their own, and cannot feed or toilet themselves. Caring for them is a solemn duty of love. You're taking up our time with non-fatal problems we know nothing about.

So show us a little respect and don't answer or post anymore. We wish you good fortune, elsewhere.
 

GilWest

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Im guessing that was probably rhetoric Gil but ill reply any way.

Im embarrased that you would suggest that . Whilst i do have O.C.D , The physical symptoms i have are very real.

No, I was being very serious. Your OCD sounds out of control. You are noticing and documenting everything that happens. I would get my psych issues under control and then see if I still had all of these symptoms. Health anxiety can be debilitating because you live in your body 24/7/365 and cannot escape the things that make you anxious.
 

Thelights

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Hello again .

I have just been to rhumatologist .
He noticed weakness and said someone my age should be able to crush his hands . He noticed slight brisk reflexes in knees but not so much in my hands .. he did say that could be because of the anxiety meds nullifying reflexes.
Hes not ruling out mnd but will be checking for
mysthenia gravis cervical something and m.s .

He noticed that my toes are curling under pressure which i have felt the oast couple of days .. also holding ateering wheel my fingers tend to clump up .

So not just anxiety ....
 

Thelights

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Hes popping me on some thyroxin for the thyroid issues i mentioned . Just done blood test 7 vials of heamaphobic goodness. The pain i mentioned in my feet in my opinion is from wasting . Also i am getting near cramps in my back below shoulder blades ..
 

Thelights

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Whats the chances of als switching off something in both hands and legs systematically at the same time ?
 

Atsugi

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Whats the chances of als switching off something in both hands and legs systematically at the same time ?

Zero. Can't happen in ALS.
You're being quite disrespectful of dying people. You don't have ALS. Please go to another site to work out your problems.
 

Dusty7

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I agree with Atsugi (who happens to be a lot more patient than I am)...

Like I told you on June 16--6 weeks ago--it's time for you to leave this site. You don't have ALS. You don't belong here.
 

Thelights

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I do apologise for my persistence.
Ive just been to the rhumatologist and my mri and bloods came back clear.

I pointed out my faciulations and what i thought was atrophy.
Hyperreflexia was mentioned as i only have to be touched slightly and i jump a mile.

Its at the point where i asked him if there are any other possibilities . He wasn't giving me any .
I am being organised an e.m.g

I keep posting here as you guys are the most knowledgable source i have atm .

Whilst i was off my head with anxiety in the beginning, who wouldn't be when they see strange shit happening to there bodies.

Im not here to troll im here for help in terms of info .

I feel as though im running out of luck now . Over the past two weeks ive started having pain around my ribs aching when i breathe , I've ocassionally breathed in saliva/ swallowing issues.

I hate to jinx myself but nothing has fully gone limp
But there is weakness/ weakness confirmed by rhumatologist.

Hes not giving me any other options i feel im on the fast track to diagnosis, what else could there be ?

Thank you for the time you have spent answering my questions . I do appreciate it and once again i am not here to troll .
 

affected

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There are still MANY other things it could be.

Let us know after the EMG, til then just try to live. What I learned is that living is a state of mind - you can choose to make the most of what you have now while you get the best medical attention.

Honestly. It took 9 months for my husband to be diagnosed and all that time we lived life to the fullest and believed that something would show up that would be fixed.

Diagnosis of ALS is far worse than fear of, I learned that.

Until an ALS specialist neurologist examines you and does and EMG you are best staying off places like this. We only know ALS really well, and you don't present with ALS symptoms.

All the best
 
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