Do I have ALS? Please help me. I am desperate.

[Kool Buddee]

Wright, thank you for your reply and your willingness to help. I'm in the process of trying get more answers from my neurologist. I will let you know once I get the results. My neurologist said they have cleared me out from autoimmune diseases via blood work. And the MRI of my brain and spinal cord came back completely normal. I have not had my kinase levels tested nor had a biopsy.

 

[Kool Buddee]

trfogey. This started happening out of the blue four months ago. I woke up and stood up from my bed and my legs felt weak and trembled, especially at my knees. I noticed I couldn't stand for long periods of time because the aching was intense. It's the most intense in my knees as well as my quadriceps. I get aches and cramps in my legs when I walk and it's very difficult to walk. My primary care physician said she noticed an abnormality in my gait.

Then my arms started to become weak and I could home a water bottle in my hands. It was the worst when I bent my elbow. My forearm is weak as well. It's rather difficult to type, my fingers and wrist feel tight. It's difficult to straighten out my fingers and toes w/o feeling a tight/aching/cramping sensation.

I'm still trying to find out if it's aches I feel or cramps. I know the difference. The cramps are mainly in my calves. The muscle twitches are not as bad, they come and go. But this has very slightly progressed, that's why I wanted to know the rate of progression.

The Neuro evaluated my leg muscles (calves, quads, etc) and said it looked normal. Then he evaluated my arm muscles and he said everything was normal until he got to my deltoid... I heard a rather fast sound on the EMG and he said, "They're firing really fast here on your deltoid. I just want to see something and I'm going to check your neck muscle." Right when he stuck the needle in the back of my neck, he said, "they're firing even faster here even when you're not contracting your neck muscles. Hmmm."

And that's all the feedback I received. So they have ruled out all autoimmune disease via blood work (I had the ANA done) and they ruled out anything MS via MRI. So what is left?

 

[Kool Buddee]

TedH5. Well that's a very good reason to not tell me. It's just a struggle waking up everyday and not knowing what's going to happen. Is it going to get worse or better. At least with a diagnosis, you already know what's going to happen. This is tragic. I can't believe your strength and the time/effort you take to respond to people with so much patience and consideration. If you're not going to tell me your journey, you can at least tell me one or a few things you do to stay positive, because you have that going for you. Do these forums help you?

 

[Kool Buddee]

Can they test your glutamate levels in your spinal cord via spinal tap and if they're elevated, it could indicate ALS or elevated Kinase levels as well.

 

[wright]

Now that you've given a few more details as to the progression of whatever it is you have . . . it certainly doesn't sound a thing like ALS (it's not even close). As Trfogey said, MND's simply do not progress in that manner (i.e. symptoms becoming apparent over your entire body in a matter of weeks). Relax and let the docs determine what you have and stop thinking you have a disease there is absolutely no evidence you have.

 

[HelenL]

Kool Buddee, have they tested you for Lyme Disease? The Western Blot test is more accurate (and still isn't very from what I've learned). It would account for the achy joints more than als would. Go to the Lyme forums and check them out.

Good luck, and Merry Christmas. I hope you get an answer soon, but in the meantime, remain positive!

 

[trfogey]

Kool,

At which point of the EMG did your doctor say that you had either a pinched nerve or ALS? With the exception of your deltoid muscle and the back of your neck, your EMG was normal. That doesn't happen with true ALS, despite what you've read here from other hysterical people. The lower motor neuron damage that ALS causes can be detected by an EMG months before any clinical symptoms are apparent to the patient or doctor.

Your twitches, cramps, and perceived weakness aren't being caused by LMN problems, so they aren't being caused by ALS. Don't know what might be the real cause, and it might take some time to figure it out, but you have much evidence to stop believing that you have ALS. Whether you will stop believing that you have ALS, of course, is up to you, but you would be an awful advocate for your own health and a lousy researcher of medical information if you did continue to believe it. Good luck to you.

 

[Zaphoon]

Kool,

I'm in a charitable mood regarding commentary today and with this being the season for giving and all, why, I want to join in agreement with you and tell you that I, too, am convinced you have ALS.

Please keep me posted!

P.S.

I am sometimes regarded in life as being a complete idiot.

I also have been abducted by space aliens and know that my problems are caused by an alien implant.

 

[Alyoop]

Zaph, did you get the little creepy implant with legs that runs up your nose? I have that model, it works well for me, I think it's due for an update so, any day now I will be uplifted to the mother ship.

Kool, I agree with you as well, why not. But I am a little warped

 

[momap53]

I propose a research study to find which tactics produce the desired result.

 

[Al]

Think Zaph was anally probed but won't admit it.

AL.

 

[Zaphoon]

I can almost prove my case. Shucks! Could have proven it long ago if I could remember. I'll bet they used one of those memory-erasing devices on me just like the one used in the movie, "Men In Black".

Men in Black in 5 seconds - YouTube

 

[TedH5]

kool...in all seriousness let us know what your Dr. says. In the meantime block ALS out of your mind and be patient until you get professional medical answers.

 

[TedH5]

Come on lets cut her some slack. We have had people come here and argue and be disrespectful with our members and we have not jumped on them in mass like this. Koolbuddie has done none of that. If a Dr. truly mentioned ALS to her then I do not blame her for coming here and asking questions. Everyone has given her great advice and hopefully she listens to it. As Barry so "eloquently" put it tis the season of the troll and while I could be wrong she does not appear to fall under that category. She most likely does not have ALS but I have not seen a lot of harm in her questions, nor have they appeared argumentative, disrespectful or even have the most far fetched story, like many who come here do, those makes me laugh and pile on as well.

As I said I was not in the Dr's office but if a Dr did mention ALS then that is who we should be ridiculing.

In the meantime Kool direct your questions to a medical professional and demand on answers that you understand and can comprehend so you hopefully can get ALS out of your mind.

 

[trfogey]

Re: Do I have ALS? Please help me. I am desperate.

As Barry so "eloquently" put it tis the season of the troll and while I could be wrong she does not appear to fall under that category.

Not sure it was BarryG who pointed out the "season of the troll," but I agree in this particular case at this particular time that this poster needs to be heard out. It's very possible that her anxiety may have had the upper hand on her during her initial post, which caused that post and her earlier responses to sound disjointed. As she has calmed down and refocused herself, her story has stabilized and rounded out and this gives us all something to work with.

But the original poster and those lurking in this forum should make their own note: If you want us to take you seriously, act like a serious person. There is absolutely no place for hysteria or "anxiety" meltdowns here. If you are that upset about what you've read here or elsewhere online that you have to be incoherent or combative, you've got your health care priorities completely backward. The more upset you are, the closer to home you should focus your search for assistance.

Acute health care needs call for local resolutions, with real live doctors in your hometown. Coming here and shrieking about how bad you feel and how much "support" you need is a juvenile and exhibitionistic act and will most probably be treated as such. And deservedly so.

To sum it up, if you don't want to be ridiculed, don't act ridiculously. Hysteria is ridiculous. Telling us to prove you wrong is ridiculous. Telling us you have ALS without a neuro's diagnosis is ridiculous.

Don't be ridiculous.