At a lost.

[Floridason]

Just wanted to give folks a quick heads up.

I’ve tried eating/drinking again. It feels awkward, but I’m able to do it. Like stuff goes down way too easily. It could be from not doing so in a few weeks. Since I heard think liquids is among the things that are cumbersome for pALS, that I’m able to drink should help me rule things out mentally. Eating was the same way, largely that I felt I wasn’t able to move stuff with the back of my tongue. I can’t tell whether I’m over analyzing, it’s still something serious, or I’m just still possessed by my anxiety.

My hands, arms, shoulders are still weak, especially the wrists it feels like. And I don’t know what’s up with my palms. Like they’re getting “fat”.

Still feeling fine twitches and crawling feelings all over my body. Neck, tongue, lips. I’ve also have a case of burning mouth. Gums and lips feel really sensitive. And the muscles in my lips are still weak, as with parts of my face. Hoping this goes away with time.

Still just trying to shake things off my shoulders and get over this. I’m just still all worked up.

I know I said I would wait till I hear of anything new from a professional, but I just wanted to point out that I am making an effort to get better.

 

[fitzroy]

Good for you Florida. Keep working through the fears and anxiety. It's still a good idea to talk about this experience with a psychologist or other healthcare professional. If you're able to get through the immediate, you'll be better able to describe any remaining physical issues that remain to a doctor. And importantly, they will have a lot less to filter through to get to the bottom of anything that might actually be happening.

I have no idea what your relationship is like, but the only other suggestion I have is that you open up with your father about this. He's obviously concerned enough about your behaviour, for whatever reason, to pull the plug on the insurance. It speaks to him saying "slow down" as have the rest of us. Quality healthcare is a partnership. You need to do your part.

 

[Floridason]

Can anyone explain what spasticity feels like from their own experiences and whether stress can cause it? Not sure if I was imagining it or not but I thought I felt some tightness in my left leg and for some reason, jaw.

 

[trfogey]

Can anyone explain what spasticity feels like from their own experiences and whether stress can cause it? Not sure if I was imagining it or not but I thought I felt some tightness in my left leg and for some reason, jaw.

We could, but it's not in your interest that we do so. Your neurologists should be the ones to tell you if you have spasticity and will tell you where you have it -- possibly even demonstrate it for you.

Frankly, floridason, with the way you twist everything you read or hear, any answer we give you is dangerous to you except "Go see your doctor." It's a shame that you've let your hysteria get the best of you.

 

[TedH5]

Trfogey as usual your advice is insightful. I have been concerned about posting on this topic in fear of adding to floridason's fear and anxiety. Floridason definitely listen to your Dr's.

 

[Floridason]

My hysteria is getting the best of me because I’m experiencing these overwhelming sensations/changes, and I can’t seem to find any concrete answer to why. It’s the uncertainty that’s really tearing me apart.

One source tells me my EMG/NCV is normal. Someone else says it isn’t. I’m told ALS doesn’t progress this fast and my symptoms aren’t ALS related but I can’t find or rather a doctor won’t tell me what “is” wrong. Because of my panic I feel like I’ve went to get examined too early but if I was really sick, it wouldn’t matter when I went to get checked in. I’m supposed to be well beyond the typical demographics of having the disease, but I hear stories of it hitting young people still.

If I just had some concrete peace of mind to why I’m feeling what I am and that’ll go away soon, I’d be great. But I’m having to sit, wait, and endure all of those “feelings” and that’s what getting at me.

I’m sorry, I’ve more than exhausted everyone’s patience with me. I look foolish, crazy, a coward and among other things I’m certain people could think of. I don’t deserve the time anyone’s spent trying to calm my fears.

 

[Ms. Pie]

Good luck to you.

 

[trfogey]

My hysteria is getting the best of me because I’m experiencing these overwhelming sensations/changes, and I can’t seem to find any concrete answer to why. It’s the uncertainty that’s really tearing me apart.

Blame your body. Or your mind. Or both. At any rate, the two of them aren't synching up with each other when you're in the room with a medical care provider who can give you definite answers. Get that right and you'll be on the way to figuring

One source tells me my EMG/NCV is normal. Someone else says it isn’t. I’m told ALS doesn’t progress this fast and my symptoms aren’t ALS related but I can’t find or rather a doctor won’t tell me what “is” wrong. Because of my panic I feel like I’ve went to get examined too early but if I was really sick, it wouldn’t matter when I went to get checked in. I’m supposed to be well beyond the typical demographics of having the disease, but I hear stories of it hitting young people still.

Here we go with the twisting of what you've read and what you've been told again. No one, here or that you've mentioned, have ever told you that your EMG was normal. The neuro that interpreted that EMG stated very clearly that there was evidence of a chronic left S1 radiculopathy, with the key word being chronic -- meaning you've had it for a while. Lo and behold, where was your first symptom -- your left leg.

Rinse and repeat with your other symptoms. You lost 15+ pounds in a couple of weeks because you couldn't swallow. Yet today, you were able to eat solid food and swallow liquids. As we've said hundreds of times here -- ALS symptoms don't come and go -- they come and stay and get worse.

If I just had some concrete peace of mind to why I’m feeling what I am and that’ll go away soon, I’d be great. But I’m having to sit, wait, and endure all of those “feelings” and that’s what getting at me.

Maybe you need to sort out for yourself what the most important problems are and attack them in that order. Instead of walking into the doctor's office and dumping the insane list of unrelated and non-reproducible crap you've listed between your two threads, pick one condition and go to the appropriate doctor. Let that doctor decide what information he needs from you to diagnose and treat that single symptom.

Like your swallowing problems. The right doctor for that is an ear, nose, and throat specialist -- an ENT. The ENT will examine your throat to determine what swallowing problems you actually have and how to treat them. Once you've been to the ENT and gotten his diagnosis and treatment plan, come back and we'll figure out the next step.

I’m sorry, I’ve more than exhausted everyone’s patience with me. I look foolish, crazy, a coward and among other things I’m certain people could think of. I don’t deserve the time anyone’s spent trying to calm my fears.

Sometimes, humility makes good bait for sympathy and compliments. This isn't one of those times.

 

[Toto's Dorothy]

Tr ********LIKE****

 

[Ggswty5]

Hello my name is Gia, and I was in the exact same position when I was exactly 23 years old. I had just recently graduated from college and moved back home. I started feeling all types of different sensations in my body and for three years straight I would look at these web posts and scare myself half to death reading them. I lost jobs, spent numerous amounts of time, energy, and money going from doctor to doctor; each time everything came back normal. I was so frustrated and I hated living that way. I finally surrendered doing things on my heart and let Jesus Christ take over my life. He recently called me to go back to this site and post what He has done for me. I have regained my sanity and I am able to join the world again. Please I would love to help my email is [email protected] please contact me I know what you are going through.

 

[TedH5]

Having chronic left S1 radiculopathy should clearly tell you what the underlying issue is as far as your first symptoms. The rest can be a combination of stress, anxiety and some other unrelated benign condition. You have many people here who know a lot about ALS from first hand experience trying to help you, yet it appears to me instead of heeding their advice you are trying to convincve yourself that something is seriously wrong.

You can not control when your next Dr's appt is nor as a matter of fact can you control whatever is wrong. So you need to find a way to get your mind off this. Perhpaps find some friends and go out and responsibly enjoy a few drinks, maybe that will loosen you up. Just be responsible and ensure you have a designated driver. I know this may seem like odd advice but I really think that you need to find a way to responsibly blow off some steam and just relax. Everything is going to be OK you just need to stop obsessing, it is unhealthy. I know this is very cliche but while you are obsessing about what could or could not be wrong you are wasting your life away. Tomorrow any one of us could be "hit by a bus" and a lot of good obsessing about ALS or whatever else is going to you will have done. Please enjoy life.

 

[notgivnup]

......Amen.......

 

[Floridason]

TedH5. I took your advice. I went out, saw two movies with friends, and had a good time. I honestly did, just somewhere in the back of my mind I still felt that something was wrong. My right hand strength is definitely getting weaker. The twitches are getting more evident all over, my face is weaker, especially the lips. Soft drinks just seem to want to poor at the sides of my mouth and I swear something is funny with my speech but no one else has said anything.

Trfogey I’m ignorant to what the EMGs/NCV means and obviously in trying to find out I ended up making matters worse with things I don’t know. I’m just confused why stuff with my leg/spine would have hand/facial issues. I’m not going to ask what possibilities are there. I’m just generally confused.

And I don’t know why I was able to start swallowing again. Weeks ago I couldn’t eat anything, regardless of how hungry/tired I was. Now I can though it feels awkward. Additionally, while I still have issues with my left leg, I’m able to stand on my toes and heel, which should tell me it’s not indicative to ALS.

My chances of having the disease are like in the millions and I don’t have symptoms that relate to it. I should be fine.

 

[trfogey]

just somewhere in the back of my mind I still felt that something was wrong. My right hand strength is definitely getting weaker. The twitches are getting more evident all over, my face is weaker, especially the lips. Soft drinks just seem to want to poor at the sides of my mouth and I swear something is funny with my speech but no one else has said anything.

Have you ever noticed that nearly every symptom or manifestation of your medical condition "seems" or "feels like" but never really "is" to the point that it can be measured? You say that your right hand strength is "definitely getting weaker". How do you know that and what do you mean when you say that?

And what do you mean by "Soft drinks just seem to want to poor at the sides of my mouth"?

I’m just confused why stuff with my leg/spine would have hand/facial issues. I’m not going to ask what possibilities are there. I’m just generally confused.

The only one saying that your leg and spine issues are related to your face and hand issues is you. You've had the leg and spine issues for a while -- months if not years. That's why you got the "chronic" added to your radiculopathy diagnosis. As to the face and hand issues, you've never been able to manifest them in front of a doctor clearly enough to provide enough information to make a diagnosis. The odds are that the hand and face issues are unrelated to the leg/spine issues, which you would realize if you would turn the fear furnace off long enough to bring your rational brain (assuming, of course, that you still have one) to come back online.

And I don’t know why I was able to start swallowing again. Weeks ago I couldn’t eat anything, regardless of how hungry/tired I was. Now I can though it feels awkward. Additionally, while I still have issues with my left leg, I’m able to stand on my toes and heel, which should tell me it’s not indicative to ALS.

Now, you're exaggerating again. If you were truly unable to swallow "weeks ago", you would be dead from dehydration by now, unless you have been plugged into IV hydration all this time.

Stop twisting and exaggerating your story. Tell it once and tell it straight. Act like the grown-up that you want to be treated as and not a hysterical child.

My chances of having the disease are like in the millions and I don’t have symptoms that relate to it. I should be fine.

Almost certainly, in the end you will be fine -- providing that you get your anxiety under control before you walk out into traffic or something.

 

[jb63]

.

Trfogey I’m ignorant to what the EMGs/NCV means and obviously in trying to find out I ended up making matters worse with things I don’t know. I’m just confused why stuff with my leg/spine would have hand/facial issues. I’m not going to ask what possibilities are there. I’m just generally confused.

I am sorry but I must add my 2 cents
florida,

The 2 do not have to be related and probably aren't. If I sit and concentrate on my face I will feel every little flush,itch and twitch. Think of it like this: You go to a museum and look at the paintings and basically see the whole picture. Then you study art go back to the museum and look at the paintings and see styles, flaws, brush strokes. You have become the Pablo Picasso of your body. I have ALS and all the wierd sensations I get have nothing to do with my disease.