Been feeling better but still have questions

[zny444]

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]

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 dx 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]

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]

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]

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]

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]

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]

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]

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]

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]

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 dx 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]

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

[ruby ben]

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]

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]

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

[zny444]

Thanks for the info Pat...

Iv'e seen a total of 4 neuros (two from the uop and 1 from umdmj (jerry belsh). I just spoke to Dr. Belsh's nurse at umdmj. She said that she spoke with the doctor regarding me coming in for an emg. She said the doctor said for me to go to my GP if I'm having shortness of breath. It seems he does not belive I need an emg, my wife agrees with him. She thinks I have seen so many dr's regarding it now that I need to let it go. It's hard as I "think" I'm seeing flatting calf muscles and now shortness of breath. What scares me the worse is that I definetly have a slight tremor also. Iv'e also been seeing my regular neuro for this tailbone/sciatic pain and she does not want to even hear about my twitching and when I showed her my calf she said "thats your muscle". She beleives I have seen THE specialist in the area and if he says I'm ok then I'm OK. Do I sit back and just let whatever happen or do I try and get a 5th opinion? BTW... all the dr's said I did not warrant an EMG. My right calf is twitching non stop! It looks like an invisible finger is poking around on it all day 24/7!

[Al]

Hi zny. After 4 Neuro's you'd think that one would say possible ALS if something definite was there to point to it. Most people describe twitching from ALS symptoms like a bag of worms wriggling under the skin. You are young to be diagnosed with this. Maybe your wife is right. Sit back. Relax (not easy) and wait 6 months and see if you worsen. Now if the shortness of breath worsens get to a doctor. It too could be caused by anxiety or hyperventilation. Not trying to trivialize your symptoms but I'd try and wait it out. Knowing now or 6 months from now will not make a difference in outcome or treatment. Good luck and take care. AL.

[zny444]

Al,
Both my wife and I think this makes the most sense. I will take your advice and sit on it for a couple of months. I will stop drinking and take my vitamins and take better care of myself and hopefully this will all go away.

I'm still having the twitching and yes they do feel like a bag of worms in right calf but I will wait it out some more. I will also focus on the fact that I saw 4 nueros about this and they all said I was fine.

Thanks for your help with this... EVERYONE!

Talk to you all soon.

Be well.

[Al]

Now I didn't say it felt like a bag of worms. It looks like a bag of worms. You can't usually feel the movement unless it is in the bigger muscles. That's what makes me think it may be something else if anything at all in your case.

[zny444]

um... I can feel some of them and some not. Does it look like a bag of worms?... hard to say. They look like little movements under the skin, like little sporadic indents. I also have them all over my body and the other ones look like big muscle movements like regular eyelid twitches only in my bicep or tricep for example. I also have pins and needles in my toes/feet when sitting down for a period of time.

[Al]

Well like I said try to wait it out and try to relax. Good luck and keep us posted. Al.

[BWk]

Zny444
Hate to keep telling you how closely your symptoms match mine,but I'm sure you want to get to the bottom of this.I had much tingling and numbness in feet early on about 7 to 8 monthes into disease. I also had muscle spasms in triceps and back area,kind of like a ripple effect. Still have some muscle spasms off and on. I'm not a doc,but I wonder how much they know about als sometimes at least the three Neuro's that I went to!They [two of them] kept insisting it is and has to be nerves almost to the point of getting mad at me! Hang in there,time will tell. Barry

[zny444]

Barry,
Thanks but no thanks... thats not what I want to hear. I don't know what to say to your comment... I'm not going to self diagnose myself and I'm not an expert in neurology. Time will tell... and I have to keep believing that I'm to young and don't fit the demographic from what my docs have told me. They insisted (all of them in fact) that the majority of patients complain of some sort of weakness first and it was extremly rare for a person to be complaining of twitching as a first sign. Lets hope there right... I have my whole life ahead of me! I'm 29!!! I have no weakness and can still ride a mtb bike and lift weights. I have to have faith that I'm ok and that its all benign. Tell you this... the disease will not kill me... I'll make sure of that!

[DarrenHock]

Hello Again Everyone,

For me, the first time I went to the doctor was for left arm weakness. I am 36 years old and thought I pinched a nerve. Well they sat me down the first visit and told me I have ALS. I have had all the test and it has been confirmed by 3 doctors. I am becoming worse almost daily. I go on disability next month and might start traveling the world before it is to late. Problem is, since my wife left me last month, I may be traveling by my self. Not really the person to be alone

[marlo]

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!

Hello,

Theres no way to know right now if our symptoms are for the same reason but yesterday for the first time my right arm started twisting back and forth on it's own after i carried a bucket of water outside to water the plants. No one noticed it so i kept it to myself for now. It startled me, cause it had never did that before. I'm almost certain that mine was from the ALS. Anyway,, i'm hoping and praying the best for you. Take care and try to be positive.

Love and Prayers
Marlo

[hwbissegg]

Hello. I don't know if you're still reading these or not, but I still thought I'd comment. Anyhow, my ALS did start with weakness...although I was able to be quite active for many months before it got really bad. Once I realized the weakness wasn't just "old age", I started noticing the twitching and that's when I went to the doctor. After a bunch of my blood work was coompleted and normal, I was sent immediately for an EMG...so that's weird that your docs don't think anything of it. But my dx didn't come until a few weeks ago because it took time for my symptoms to manifest and show up on the EMG. So I don't know if that helps or makes you more nervous?! One thing is for sure though...age doesn't matter as much it may seem. The fact that I'm female and my age gave me comfort for months before I was diagnosed--I'm only 27! So I know firsthand the kind of worries you and your wife are going through...except now we're actually living it!! But, like you, I'm not gonna let this get me! And the good news is you don't have any other symptoms so far so just keep thinking positive and live in ignorance as long as you can! Be sure to let us know of your progress. Good luck!!
Heather B.