Another scared person

[gillos]

First of all I want to show my love and sympathy for the people who have been diagnosed with a.l.s !

Second , I want to apologize for my english wich is kinda poor ( belgian ).

But i wanted to explain my symptoms on here since this range is wider... or how you say this haha

Since a couple of months ago ( 8 now ) i started having troubles running .. leggs just didnt have the strenght anymore like it should have. Was tired way to fast.

With as a result i kinda just gave up doing sports ... and became lazy.

When i decided to start over again i realised something was wrong ... this was not how i should feel even without doing sports !

So i decided to go to doctor which gave me the advice stopping by a neurologist.

Conclusion : denervation , more in right legg then left. and also exaggerated reflexes with that knee thing test.
this is one month and two weeks ago

one week before the docs visite i also had fasciculations over my entire body ... which are still there right now ...

special bloodtest gave normal results for everything.

Me knowing all this ... you can already guess afffraid of a.l.s

I am almost 25 right now and still a student .... i am honestly giving up everything since i am tired all the time and going to a depression because of anxiety.

I know that as long as you havent been diagnosed you cant give up yet ... but i just can`t cope with this although i try.

Reading on this forum i kinda concluding for myself already that i just have it and it cant be something else.

While writing this down i feel like being very disrespectful for all the people who are actually diagnosed and i shouldn`t exaggerate my situation.

But hell this is difficult !

 

[Twinsmom]

Dear Gillos,
I know this is a stressful time, but please don't make the mistake so many do and assume ALS. I would encourage you to follow-up with the neurologist and continue testing to see if there are any treatable issues that come up. As I'm sure you've read, receiving a diagnosis of ALS is based on ruling OUT everything else.

Peace,
Melody

 

[halfin]

Hello Gillos - I'm sorry you have to be going through this, but welcome to the forum. Hopefully you will not need to be a long term member.

Many people come here with different symptoms that make them afraid of ALS. Sometimes their symptoms actually have nothing to do with ALS. Other times, like with you, your symptoms are the kind of thing that can be ALS. But even then it often turns out to be something else. There are many possible diseases and only the doctors can make a real diagnosis.

The best thing you have going for you is that you are only 25. ALS is very rare at such a young age.

There are other things that can cause denervation and muscle weakness too. Old injuries, or pressure on the nerves can be a cause. They should do an MRI of your spine, if they have not done that. There other other kinds of nerve diseases too, some of which do not progress or only progress slowly.

I don't blame you for being afraid of ALS, it is a scary disease. But even in the worst case, it is not the end of the world. Many people survive 10 years or even longer. Younger people tend to have longer survival than others. And there are many new treatments being developed, including stem cells which have the potential to bring a revolution to medicine. So there is good reason to be optimistic that an ALS diagnosis is not as bad today as in the past, especially for a young person.

But still, it is too early to worry too much. There are many possibilities and more tests that you have to go through. Hopefully they will be able to find something wrong that they can treat and help you. The odds are still in your favor for a good outcome, so don't lose hope.

 

[Zaphoon]

Gillos,

A diagnosis of ALS is determined after ruling out all other possibilities (which can take some time and a lot of testing).

It can always be something other than ALS until it can't be anything but ALS.

There are many other possibilities yet to be ruled out. Try thinking along this line.

Zaphoon

 

[gillos]

Thx to everyone for the replying ...

I have exams right now so i am postponing my next appointments till they are finnished.

26th i have my mri scan and will make another appointment with neurologist right after it.

I am trying to see good things by telling myself its my lifestyle and not something bad.
I also keep on telling myself i am too young for this.

mostly i hear the loss of strenght starts in one part of the body .... i have it more in both leggs, above the knees.

it also feels more being tired rapidly then really losing strenght.

but i guess waiting is the only option !

 

[gillos]

Hello guys ,

It`s a long time ago since my last message.

I took full advantage of my exams to forget all my problems.

In two weeks i have my mri of the full spine and will make an appointment with neurologist right after it.

I still have the same problems, lots of fasciculations and weakness in leggs.

About that weakness i had a question ....

After doing something where there is tension needed on my upperleggs , my both leggs start shaking badly afterwards when standing or using them again.

to explain this stupid ..... its like signal , no signal, signal no signal to my muscles.

The next day this is gone ( but not the common weakness i always expire ).

Is this what they call muscle weakness ? could it be lack of excercise ? or is this is what denervation causes ?

The reason am asking this is because its holding me back so much to do stuff ...

Thx for the help guys

 

[gillos]

Another question since am getting more and more affraid of having this disease.

This thursday i have a mri scan of the full spine.

I have the idea now that if they dont find anything on that i may be sure i have it, or at least a motor neuron disease?!

* Clean bloodtest
* Denervation in legs ( one emg )
* Fasciculations
* Progressing weakness

It freaks me out if i think of those scary resemblances

 

[rose]

gillos,

It sounds like you know how important it is not to dwell on what "could be". There are truly other possible causes for what you describe.

I don't have a medical background, nor do I understand the terminology of testing as well as many of the other forum members here. BUT, I do know that EMG positive for ALS shows chronic and active denervation as well as active reinnervation. Basically that there is an ongoing process of nerve loss, and other nearby nerves taking over for the muscle. With your test just showing denerving but not a history of this process going on, should point away from a motor neuron disease. In fact, even if your EMG did show this pattern, it would not mean you had ALS.

Good luck to you, try not to worry. Your journey could be long before you have any definitive answers.

And... your English is much better than my Dutch/German/French is! I've been to Brussels many times, but would be lost if I had to communicate in anything other than my native tongue. You do very well expressing what your questions are.

 

[trfogey]

Just a couple of comments.

1) If your MRI comes back normal, you should NOT assume that you have ALS or any other motor neuron disease. There are many tests that you may need to undergo before all the other possible conditions that could be causing your symptoms can be eliminated from consideration. You are at the beginning of the diagnostic road and probably nowhere close to the end of it. Put ALS out of your mind and start Googling things like BFS or herniated discs, which are literally thousands of times more likely at your age than ALS/MND.

2) ALS-caused weakness usually starts at the far end of an limb and progresses along the limb back towards the spine. It also starts in one limb before it starts in the others, usually, so one arm or leg will be significantly impaired before its mate shows any noticeable signs. If both of your legs are showing a similar degree of weakness and are still fully functional, then you should stop worrying about ALS.

 

[Ericthebearman]

Look,

My sympathies, Empathies and shared pains and fears!

I don't understand Forums, trhreads or any of itm but thanks for the description of ALS pathology!

I've been diagnosed w CIDP, something pretty similr in symptoms involving demeylination of connective nerves? So, you are telling me ALS usually displays assymetrically?

CIDP is progressive, also, not real treatable,for me, and I subscribed to get ahandle on how to play this hand? I'm trhree years in, can walk, stil, but losing strength, severely, coordination and sme "focus" issues, mentally.

Anyway, same boat, different cabin, avast ye mateys! Tell Cap'n Crunched, here how to bring er about!

Eric

 

[lovelily]

Hello gillos....Sorry for your troubles and worries, which are understandable.

I agree with Rose on her points. While no one here are doctors, you do pick up some of the medical terminology, that goes along with ALS.

I am one of those patients that have confounded the doctors. Go figure. I have had 3 muscle biopsies, and one nerve biopsy. There were lack of 'nerves' in nerve biopsy, but no pathological process that they could see.

All three were abnormal. First one " myopathic ". ( upper arm ). Second, acute and chronic denervation, with collateral sprouting. ( Thigh ). Then an 'EMG' of the opposing thigh, showed acute and chronic denervation with fibrillations, and a few positive sharp waves.

Third muscle and nerve biopsy done this past September. ( OUCH! ) Abnormal. This biopsy was so abnormal that they called in a retired neuro pathologist to review the case.

This was, again, " Myopathic ". This time I was given a 'tenative' diagnosis of 'Myofibrillar Myopathy', by the neuro pathologist who did the biopsy report.

This same department is now in possession of my last 2 muscle biopsies from New York City, because minimal testing was done. And they are not sure of their diagnoses.

Two of my doctors have said this disease is neuromuscular. My neurologist is going insane about my having myopathy and denervation, at the same time.

I am currently waiting to get into a neuromuscular disease hospital. No word yet.

See....you just never know what it may be. Could be easy and straight forward, or complicated. Point being, sometimes you have to wait for the disease process to move forward.

Best wishes! I hope that you do NOT have ALS.

 

[gillos]

Just a couple of comments.

1) If your MRI comes back normal, you should NOT assume that you have ALS or any other motor neuron disease. There are many tests that you may need to undergo before all the other possible conditions that could be causing your symptoms can be eliminated from consideration. You are at the beginning of the diagnostic road and probably nowhere close to the end of it. Put ALS out of your mind and start Googling things like BFS or herniated discs, which are literally thousands of times more likely at your age than ALS/MND.

2) ALS-caused weakness usually starts at the far end of an limb and progresses along the limb back towards the spine. It also starts in one limb before it starts in the others, usually, so one arm or leg will be significantly impaired before its mate shows any noticeable signs. If both of your legs are showing a similar degree of weakness and are still fully functional, then you should stop worrying about ALS.

Its a fact that in my case it didnt start at the far end of my legs.
It started in my upperlegs and a bit in my calfs but less.
Neither it started in one leg then in another one. Its still going symmetrically.

Although now it started in one arm/shoulder which concerns me , because that means it does spread around and cant be a pinched nerve anymore ?!

I also do know that at age 24 ( well almost 25 ) its very rare ... but that doesnt matter if u are that unlucky youngster I guess.


This progression of weakness showed me that when I bend through my knees I see those muscles shaking ..... thats what they call spasticity ?


Thx for the replies and help !

Greetz

 

[gillos]

I have another question .....

I feel some blimps in my tongue, those are fasciculations ?

If thats so , can that only be a bad thing ?

 

[gillos]

Again here after some time...

Since my dirty emg in november 2009 , i didnt see any doctor anymore neither did one single test anymore.

I think i did the most stupid thing to self diagnos myself already with a.l.s

I am too scared to continue the tests , unbelievable

Just had to share this since i dont talk with anyone about it

 

[_Saj_]

I am too scared to continue the tests , unbelievable

no , it's not unbelievable...

but I think you should do your tests because, as they have said you, you might be suffering form something treatable.

I know it's much easier to write it down than do it... but....