Doctor Ignores LS Symptoms: What Gives?

[NinaC2005]

I'm really sorry you're having to go through this. For a doctor to toss off *LS like he was discussing the weather is really bone-headed. Recommend that you see a neuro, yes, but if he's not qualified to make the call, he should keep his mouth shut. Where do these people get their bedside manner?

FWIW, I would think that if the decrease in the size of your extremities is due to atrophy and the "bad stuff," you'd most certainly have some form of serious--real--weakness by now. Did the twitching precede the drop in the size of your arms/legs? And from what I understand, widespread twitching is generally a sign that it's benign. Likewise, a uniform decrease in size doesn't make sense as far as I understand *LS. I also believe there's a difference between a decrease in fat/muscle mass and atrophy. But again, it stands to reason that such widespread atrophy--if indeed that's what it was and I'd doubt it--would be accompanied by true, clinical weakness.

Of course, I wouldn't mind losing 10lbs myself ) , but can understand your concern, especially after your doc opened his mouth. I hope you can get this sorted out with a good neuro who doesn't shoot from the hip the way this specialist apparently does. Please let us know what you learn and hang in there.

Mark

 

[OrangeLemon]

Thanks for the replies. It does help.

The extremity size reduction did happen after the twitching started. Up until about a month ago, i never noticed my feet twitch at all. I have alot of pain points. Like my left hip/groin area. For example: It hurts to lift my let in and out of the car. The insides of my knees were hurting alot for about a week and then that sorta went away. I have really dry eyes and some visual distortion that doesnt go a way with glasses or eye drops. I also notice double vision when i am laying down and glance over at the clock. I see 2 sets of numbers. I put my glasses on and it helps for a little while and then i cant focus with them on either. I have read some of the low electrolyte things i have going on can cause all of my symptoms. Can **S show up in your eye muscles?

One doctor insisted that i might have some kind of malabsorption thing going on like Celic Sprue of Crohn's.. The doc at Mayo clinic didnt think so at all, and i dont even think he is testing any of that stuff yet.

Also, I am worried about it being Cushings. That is one of the things they are currently testing me for. I had pneumonia in April 2005 and they did a CT scan cause they saw something on the XRay. My family doc did another xray after the that and said it was just the infection. Now I got a copy of the real CT report myself and they saw a few spots on there that were "questionable". I am scared that this may be a Cortisol prodcuing tumor in my lung.

All this crap is so scary. I feel like i am losing my mind. Like i am becoming a hypochondriac or something. Why does twitching become such a terrifying experience? I use to be a pillar of mental strength. Now I see myself becoming just a scared head case and a ping-pong ball in the medical community...

 

[LiamTerry]

I lost about 7 lbs. - and have since gained it back - because of anxiety. It was not due to increased exercise or eating less - I am sure it was because my whole system "speeded up" - that fight-or-flight thing.

If you've lost fat and your muscles are now more defined, I think you have nothing to worry about! )

 

[SlavinBreeze]

You can test Crohn's and Celiac in a few days. I did EMA (Celiac) from blood work (negative) and colon's X-ray with contrast; negative also. On this way they are looking for signs of Crohn's desease. It was relatively unpleasant.

 

[beensuggested]

Hyperparathyroidism will give you a reason for most of you symptoms. I really wouldn't worry about the ALS as it is highly unlikely. What you do have is a metabolic disorder and this will even give you some of your twitching. Wait for the results of all of your tests and see a good endocrinologist. Don't even give the ALS issue another thought.
Kit

 

[beensuggested]

Hyperparathyroidism will give you a reason for most of you symptoms. I really wouldn't worry about the ALS as it is highly unlikely. What you do have is a metabolic disorder and this will even give you some of your twitching. Wait for the results of all of your tests and see a good endocrinologist. Don't even give the ALS issue another thought.
Kit

 

[zinflodia]

I have crohns for 10 years now and believe me you would know if you had crohns without tests. the tests only confirm.

 

[ValgerAce59]

Thanks, guys, and sorry about being a spaz. The tongue thing just has me kind of worried right now, it seems to be a 'hotspot'. It's not really that bad, just little pops here and there throughout the day, and I generally feel like my head area is having alot of twitching lately. I was sitting in the car waiting for my daughter the other day, and I pulled down the visor to look at my tongue, and as I put it to the left side of my mouth, it does this shaky thing. My mouth area does that now too, if I smile sometimes it quivers on the left side. Wow, I hope nobody sees me sticking my tongue out in the car!
Hi JosiahManning~~thanks for asking about the neuro exam~~the thing is, I guess I did have a 'clean' one, but again, he didn't really do anything. He did some very short, quick tests, and then just talked to me. I really like him, because I feel that I could gain alot by going to him, but he still sort of has that attitude of "Even if you do have ALS, then so what?"...He is trying to get me to deal with whatever might happen to me in life. He feels like your time here on Earth is limited anyway, so you better enjoy it. I still wanted to know if he thought I had ALS, and I guess unless I'm an idiot, he pretty much was telling me that he did not think I had it. After all, he was mentioning "hypervigilance", and other things like that, which would make me believe he was trying to tell me, in a nice way, to get on with my life, and stop obsessing over this. Still, as I notice others seem to do on this board, we walk out of the neuro office with still some questions, and all it takes is one little negative thought to get in there, and bam, it's mountain out of a mole hill again. It's interesting, because even look at how inzTwoToneTunes had to write me, and explain what he said, because I took the slightest amount of negativity out of what he said, and made it a bigger deal than he meant it to be. Same thing with the neuro, it's easy to go over and over it in my head, and think, "Well, just WHAT did he mean by that???'.....he'd probably be cracking up if he could see me.
It's just that I do feel this trouble with speaking, and eating sometimes, and I know I'm focused on it, but I just don't feel well lately. Today I got up and ate badly, and now I'm having kind of a yucky feeling day, so I'm trying to turn that around. I honestly don't know why it's so easy to obsess over this disorder, I guess there is such a fear of ALS among us here, it's easy to worry about, and also, I think the symptoms, unfortunatley, that come along with ALS, are the same type of symptoms you can have with anxiety disorders, which I have had for years. Well, gotta run, but thanks so much for all the help! Hey, did you guys have trouble getting on here for a couple days? My computer wouldn't let me on...talk to you soon, Val