Been feeling better but still have questions

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zny444

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Hi Guys,
Iv'e been feeling a bit better regardless of the twitches (which are still occuring). Still no EMG and the neuro that I see refuses to even talk about it with me! I'm about 80% beleiving all the neuros I saw that its benign but the 20% is still a bit worried. Here's the deal...

My calf has been twitching since Febuary (5mos) it has since spread to the rest of my body. What does everyone think? Would I be seeing other signs of that disease by now? I still kinda think my right calf muscle is smaller then the left and it has an indent. In 5mos would it have totally shrunk like I would REALLY see some atrophy? Would I also be tripping by now or not even able to walk? I just worked out my legs big time the other day and my right calf is still stronger then the left. I read awhile ago that it takes like 80% of the muscle to go away before a person notices TRUE weakness. Is this true? (I'm not freaking out anymore just asking questions)

Should I go around my neuro and demand an emg? Thanks again for all your support!
 

marlo

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Hello,
Glad your feeling alittle better. I can only speak for myself of course, but as for what i have experienced with ALS the answer to your question would be NO. I was diagnosed almost a year ago,, and still have my motor skills. I do twitch and my legs look alittle indented just below the knee but not everyone goes down hill all that fast. That doesn't mean you should start panicing again. Why don't the doctors want to talk about it with you,, are you on the young side? Hope you find some answers soon,, Good Ones.

Love and Prayers
Marlo
 

zny444

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Thanks for your reply Marlo...

I'm only 29 and all of this started back in Jan with back pain. I have since been through a gauntlet of docs including an als clinic in Jersey and Univeristy of Penn. All the neuros said it was anxiety and for me not to even bother with an emg. I still have twitching and there little ones now in my calf muscles that look like an invisible finger is pooking around on my legs. Arrgghhh... I'm scared, confused and worried, the similarities are scary.

Thanks Marlo for your support and help!
 

BWk

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Zny444 I started out in Aug with much twitching in legs and the arches of my feet.Never have had 'ever' cramping as many others do.But I do have atrophy bad now in arms,face,legs.Did you ever have any trembling that's how it sarted with me.DO you feel weaker.?I would also wake up feeling hot at night,but I would not have a temperature.Don,t know if this will help any,but don't panic,could be something else. Barry of N.M.
 

zny444

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Hi BWK,
I have had some weird trembling nothing really noticable but its as if my lower jaw has a vibration to it... it's really weird! I also have had some shaking of my arms after lifting something heavy or something like that. As for the weakness... I can't say I have any. I still can lift weights, ride a bike, and run. I don't feel fatigued or tired either.

Thanks for your help and support!
 

marlo

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zny444 said:
Thanks for your reply Marlo...

I'm only 29 and all of this started back in Jan with back pain. I have since been through a gauntlet of docs including an als clinic in Jersey and Univeristy of Penn. All the neuros said it was anxiety and for me not to even bother with an emg. I still have twitching and there little ones now in my calf muscles that look like an invisible finger is pooking around on my legs. Arrgghhh... I'm scared, confused and worried, the similarities are scary.

Thanks Marlo for your support and help!
Hello Again,
My guess is the doctors blow you off because of your age. They figure young people dont' get ALS very much,, but that makes me a little irratated with them, cause some young people do get it. So how can they just say oh your not a candidate for the disease. I'm not that young but they told me i wasn't a candidate for it either,,cause i don't drink, smoke, do drugs etc. but here i am. So i wish they'd just do the tests for people and stop making them go thru such stress,, with do i or don't i have it. They always want to tell you it's in your head, or your just stressed out. I've had stress in my life many times,, as i'm sure everyone has,, but our bodies don't just start twitching and breaking down because of it. This is different and they should know it. Sorry i guess i'm venting alittle here. It's just that i had one doctor tell me,, if i was to go out and find one good man,, my troubles would be over. Hum,,,,,,,, i had no idea that a good man ,, could take this from me.,,, who knew?

Well hope you all have a good day ,, and you fathers a Great Fathers Day.

Love and Prayers
Marlo
 

Al

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Well Marlo I would have to say that some of us GOOD men can perform certain miracles but I don't know anyone yet that can cure ALS. Some docs are real jerks. I did have one that had the bedside manner of a turnip. Mean and self centered bit-h she was. I can relate to what you are saying.
 

marlo

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Thanks Al, i know there are still a few good men out there as there are still a few good women. It just hurts more when it comes from a doctor thats suppose to be helping you. I don't hold his ignorance against other men. You all have been very helpful.
I do have a question to anyone on this forum. I have kind of asked it before lumped in with a bunch of other symptoms so this time i will just ask what i really want to know.
I know that ALS has many symptoms that act differently for every person. What i would like to know is this,, Has anyone experienced internal bleeding with it? Mine tends to end up in my throat and mouth. Theres no bleeding ulcers ,, no sinus stuff,, no teeth etc problems either. I have had MRI's , scans, etc. The doctors say they see it but can't find where it comes from. I have a thyroid problem but at least 4 different doctors have said that it isnt' caused from that. What i'm wondering is ,, am i dealing with yet another health issue.? I do know that oral cancer can do this,, but so far the doctors don't see any signs of that either.
Well thanks for any input on this subject.

Love and Prayers
Marlo
 

Al

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Hi Marlo. Sorry but I can't recall anyone talking about internal bleeding from the ALS. Could be something quite simple or something complicated. Keep bugging them to find out.
 

marlo

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Thanks Al, i will do what i can. After so many tests, doctors and no answers,, ya just want to give up. The only thing that keeps me going in that area is because i know they can see it,, so it's not just in my head. Well actually ,, i guess ,, it is ,, kinda,, hehe

Love and Prayers
Marlo
 

BWk

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What' up

Zny444,

Let us know how your doing.Sorry your on this site, your so young, my son is thirty and I would hate to see him with als symptoms,and he could 'possible' someday get it if this stuff is heridity.In my opinion all MND is possible heridity and partly enviromental.Yes I to have have trembling in lower jaw. I think our diet in our times is no good. GO to an organic diet,why wait for diagnosed to start being healthier. AT almost two years "in"I am still mobile,still drive, fair amount strength still. ALS is terrible but you have to live with it if you have it. The disease is you after awhile if you let it and you become comsumed.Hope that makes sense. I'm not always that good at phraseology.Take care Bud. Barry of N.M.
 

Al

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Hey Barry.. When you speak from the heart we understand and no explanations are necessary.
 

ruby ben

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zny 444

You feel as if you have atrophy in your calf.
Six months after I started tripping I noticed that my right calf was smaller than my left. I measured it and it was 1 1/2 inches smaller than my left. This seem to happen over-night with no sensations. It has stayed the same for 3 years. Now my right thigh is atrophying (such a word?) and I THINK my right foot is smaller...............ruby from vancouver (surrey)
 

zny444

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Thank you all for your comments and support...

This past weekend was rather rough for myself and my wife, we are both scared! I can not believe that at 29 I would ever think of this. We are just buying our first house and all this is happening to us. My poor wife... what I am putting her through?! I don't know what else to say.
 

skode

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zny444
Stay calm; the odds are very much you don't have ALS.
Some neurologists estimate that as many as 15% of the people diagnosed with ALS have been incorrectly diagnosed. Self-diagnosis is not a wise idea; it can cause unnecessary stress and anxiety. A lot of people read about the symptoms of ALS, read too much into things that they have noticed about themselves and then worry themselves sick that they've got ALS. It’s odd that you didn’t have an EMG test, but I’m no doctor. Which ALS doctor/neuros have you seen? I’m from South Jersey and my ALS doctor (Leo McCluskey) is affiliated with the University of Pennsylvania and I go to the ALSA clinic in Philadelphia. When doctors that specialize in ALS see you, they will look at all your symptoms and determine if they are consistent with possible ALS. If they conclude that you don’t have ALS, then rejoice, go home and celebrate. For peace of mind, you can always get a second opinion. Some neurologists estimate that as many as 15% of the people diagnosed with ALS have been incorrectly diagnosed.

Here’s the ALS site with info for getting a second opinion:
http://www.alsa.org/patient/opinion.cfm

Pat
 
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