Very worried that I have ALS: please help

joy2 said:

But I need to have some hope that even though I have perhaps prematurely diagnosed myself, that maybe and hopefully I am wrong. Don't mean to offend anyone with my so-called hysteria. I have been having more weakness in my left leg that just doesn't seem to let up, it's now my calf that feels weaker and getting more twitches in knee and ankle.

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What do you need to give you such hope? Seriously? And it's not that you have "perhaps prematurely diagnosed" yourself with ALS -- you have absolutely prematurely diagnosed yourself with ALS.

Why do you cling to your fears so tenaciously when there is every reason in the world to walk away from them? Is proving that your medical G o o g l e-fu is better than everybody else's knowledge of this disease so important to you? Why do you want this disease so badly that you'll lie to yourself and cover your eyes and ears to keep other people from cluing you in?

Joy, Listen to trfogey!

trfogey, and here I thought putting the word "perhaps" in would throw you off. Believe me, I absolutely DO NOT want to have this disease, and I do appreciate your knowledge and I am trying to let that sink in. Except everytime I get a muscle ache, twitch, and feel weakness when walking, I panic, look at my children, and want to cry. I am going to refrain from posting anymore about this until I have an EMG and see what's going on.

Thanks to everyone for their support and help.
Joy

joy2 said:

I am going to refrain from posting anymore about this until I have an EMG and see what's going on.

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Joy,

It's not the posting that is harmful to you. It's reading that you're doing between posts. You know so little about this disease that you have no idea whether the information you read is true. And because you lack that knowledge, the stories in the archives here simply feed that fear.

If you have to quit something here, quit reading other people's threads. Post your questions here and we'll do our best to get you the real answers for them.

You are right, trfogey.
thank-you

Now I'm freaking out even more, sorry guys. I know most of you probably think i'm a hysterical/hypochondriac. Just got a letter/questionnaire in the mail regarding my appointment with the Neurologist in 2 weeks. I didn't know that it's in the ALS clinic at the hospital. I know that is a good thing but now I'm thinking that the internal medicine Dr. that I see thinks that it could be ALS. I just thought that I was seeing a neurologist who would then refer me to that clinic if he suspected it was ALS. I had an ultrasound today on my thyroid. I was hoping that my thyroid was causing me to feel tightness in my neck and difficulty swallowing, but all came back normal. Both arms are weaker today, get tired easily when I lift things like a frying pan for example or lift my arms to stir a pot, and left leg weakness has not let up since I first noticed it over a month ago. I am very very scared that I eventually find out that I have ALS. I had someone check my reflexes and my left leg moves up a lot more than it did last month when the dr. checked it.

No, the Internal Medicine doc is covering his bases. We live in a sue-happy society. CYA is the term. The questionnaire is standard for new patients.

What you're not understanding, hon...is that you CAN do things. Last week, I realized I couldn't clip my own fingernails. A few months ago, I couldn't push the buttons on a toaster. I haven't worn a shirt with buttons in over a year.

Weakness and INABILITY to do something are very, very different things.

Having friends check your reflexes is just----idiotic. That's the only word I can use. A trained DOCTOR checks reflexes--not a friend.

Relax, go to the appointment. Don't borrow trouble.

NOTME: you're right that was idiotic to have someone check my reflexes, probably should have omitted that in my post, as it further paints me as a hypochodriac. Just have a question for you. Doesn't the inability come much after the weakness. I would imagine that at the beginning stages you gradually weaken to the point of inability. So even though I feel some weakness now, it all just started in January, so if it's ALS that I may have, wouldn't it be too soon to be unable to do something? I did have a follow up today with internal med.dr. He said that my symptoms could be ALS, MS, or some other neuromuscular problem. He measured my calves and said that my left calf is 1cm smaller than my right, but that isn't significant, and I may have always had that difference, I don't know. He said that the difference would have to be 3cm or greater to be indicative of a problem with muscle.

joy2,

If you want to know what your internal medicine doctor thinks, quit playing silly mindreading games -- contact him and ask him what he thinks. Ask him why he referred you to a neuro at the ALS clinic. Don't be surprised if he says that it's where the good neuros in your area who know about muscle twitching practice. Don't be surprised if he says that the ALS clinic is the best (or only) local place to get an EMG done. Don't be surprised if he says "You are so convinced that you do have ALS that I figure that the only way you'll be convinced that you don't have it is for the ALS clinic to tell you that you don't have it."

And please get some real medical help with your anxiety. You've gone way over the edge here.

Joy2, great advise has been given, make that appointment and wait and see what the experts say. Stop worrying it will not change your diagnosis, just your mentel health. Let them figure it out, be patient, it is hard but doable.

trfogey: I did ask the Dr. why I was sent to the ALS clinic, it's also the neuromuscular clinic and that's where the neurologists are at that particular hospital. He assessed me yesterday and said that my left calf is 1 cm smaller than right,but that is an insignificant difference. Said reflexes were normal.

I am praying that you are right and my symptoms are not that of ALS, but I have had throbbing cramping and stiffness in left leg for almost 8 weeks now and it hasn't let up. I feel that it is weaker than right leg only because I find it feels different when walking compared to my right. I don't have foot drop, just a constant achiness and now only an occasional twitching, mainly under knee and hip area. As of this morning the cramping is now in my right leg around thigh to shin area and it feels exactly like my left leg did when all this started 8 weeks ago. Hopefully I will get some answers when I see the neurologist and have EMG done later this month. Both of my arms feel weak and have a similar ache in bicep/tricep area. Could this be an atypical presentation of AlS since it has gotten progressively worse since mid January? I don't mean to irritate all of you with my concerns. This is a forum for asking questions about your symptoms and I have nobody else I can speak to about this until I see the Neurologist and I am finding the waiting very difficult. I feel like I get worse every day.
Thank-you

joy2,

If the problems in your left leg were being caused by ALS, you would have abnormal reflexes in that leg. You would have clinical weakness and abnormal reflexes in one or more of the muscles of that leg long before you would see any atrophy, because they happen immediately when portions of the muscle are denervated by the disease. That's just the way the disease works. The reflex problems are not a "maybe" symptom or a "late stage" symptom. They are an early symptom that gets progressively worse.

You don't have abnormal reflexes in that leg, as you've just stated. What conclusion would you draw, given what I told you in the previous paragraph?

There are many medical conditions that can cause muscle cramping and stiffness. Given the time frame that you say that your problems happened in, some type of infection or injury or a combination of disorders is far more likely than a neurodegenerative disorder.

There really is no reason for you to think that you have ALS. You admit that when you ask if you might not have an atypical presentation of ALS. The only case you can possibly make comes from other people's stories -- the vast majority of whom were people that never were diagnosed with ALS or any other MND, but their posts come up when you search here using certain words.

I told you before that your posting wasn't a problem -- it was the reading you were doing between posts that were confusing you and feeding your fears. Please stop the extra reading. You're in no emotional condition to view what you read with the objectivity you need to sort the BS from the truth. Please stop feeding your fears.

Hope this helps.

Tr has given you great advice. Now turn off the computer and go enjoy life. You might try getting some meds for your anxiety. But I know you will be back. You might want to reread your thread again this time with an open mind!

I have listened to your advice and have quit googling my symptoms. However, I truly feel that something is going on with me as I find it harder to walk on left leg which feels tight around mid thigh down to shin, and now my right leg has the exact same feeling. Getting more fasciculations on left leg. Both arms have been getting progressively weaker since mid January. They tire easily when I lift them, feel vibrations in tricep area down to elbow and in crook of both arms as well, with intermittent aches both arms. I have been occasionally getting twitches in hands. I know all of you who have been diagnosed are dealing with a lot more than I am and probably don't have the patience to deal with what may sound like crazy symptoms or those being caused by anxiety. What I am experiencing and the waiting are definitely making me nervous and anxious but are not causing these symptoms. I even feel a tingling feeling from the left side of my head down and in left side of body near ribs.

My arm weakness started in Jan. in both arms. Almost 2 weeks after started feeling weakness in left leg, now 6 weeks later, feel same feeling in right leg. Is it possible for ALS to start and spread this quickly. Thank you so much for your time and help.
Joy

joy2 said:

NOTME: you're right that was idiotic to have someone check my reflexes, probably should have omitted that in my post, as it further paints me as a hypochodriac. Just have a question for you. Doesn't the inability come much after the weakness. I would imagine that at the beginning stages you gradually weaken to the point of inability. So even though I feel some weakness now, it all just started in January, so if it's ALS that I may have, wouldn't it be too soon to be unable to do something? I did have a follow up today with internal med.dr. He said that my symptoms could be ALS, MS, or some other neuromuscular problem. He measured my calves and said that my left calf is 1cm smaller than my right, but that isn't significant, and I may have always had that difference, I don't know. He said that the difference would have to be 3cm or greater to be indicative of a problem with muscle.

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Hon--the things in your first post just aren't ALS symptoms. Blacking out. Random pain in your back. Random issues with you neck.

Most have limbs of different sizes--honest.

My left arm is INCHES smaller than my right--inches, not centimeters. Rings fly right off my fingers. I can't snap my fingers. I can't lift a two liter bottle of diet coke. I can't control my fingers enough to type two handed anymore with mega-errors. And, my left arm is my dominant arm--as i'm left handed.

My point is that my first issue was weakness-something I simply could not do. In my case it wasn't a feeling, it was an actuality. I simply could not push the buttons to unlock my car doors (fords have keypads) That was the FIRST thing I noticed. It's what sent me to the doctor. It took a year for my arm to waste away--but the real weakness was there long ago.

Tingling, numbness, burning feeling -- NOT part of ALS. Those are sensory things. ALS doesn't affect sensory nerves.

Could you have ALS? Sure you could Anyone could. 1 in 100k or so do. Do your particular symptoms point to it? No, I don't think so.

Try to relax and just let them do their testing hon. Again, don't borrow trouble. Your doctor simply can't say ALS is not POSSIBLE until it's been completely ruled out. My question is: DID he say it's LIKELY?