Al, wright, BethU, or anyone...

[Boo Boo 621]

I'm sorry for being a pain but I really want to make clear my symptoms:

I mentioned that I am a 35 year-old woman and about a week ago I noticed a weird feeling in my right calf. I realized it was twitching and that I could see the skin moving in accordance. NOW, I definitely can tell, see, feel, that my right calf is smaller and has less muscle tone and definition. It was brought to my attention that with BFS you can see/feel your muscle twitches ALL the time and with ALS they are more subtle. Well, mine go from the occasional obviousness to me having to cup my calf and press my fingers down and feel them. They are VERY subtle ( As I sit here I can't feel them unless I touch my calf!) and seem to happen less at rest than when I am actually looking for them or when my muscle is being stretched or flexed. I thought it was a good thing if I could SEE the twitches but I am not always FEELING them I don't think. I woke up tonight (its now 5am) with a liitle bit of sweating and am very panicked. I do not have any weakness though I have noticed my right hand tends to feel tighter after a lot of use typing, or keeping it curled when working out, but this has been the case for awhile now. I can still button things and pick up things. I am just trying to be as specific as possible. I go to the neuro tomorrow..do you have any other last words for me, as I do not want to just use the site to soothe my panic attacks at 5am when I am undiagnosed? I just have a new baby that we tried for over 2 years to have and I'm so scared I might not be able to care for her before too long. Please don't be mad at me and please forgive my persistence.

 

[wright]

You have now gone into the world of complete irrationality. You need to calm down. NOTHING . . . and I mean . . . NOTHING that you have told us so far merits any worry about ALS.

You also said in another post that you have far too much knowledge about diseases. Could you tell me exactly how you have this knowledge? Would it be doctor google? Unless you have an M.D. or something comparable, you are not qualified to diagnose yourself. You're already stating things about ALS that are wrong.

Go enjoy you child, your family, your life. Wait to see the neuro tomorrow so that someone QUALIFIED can tell you that you are fine . . . and do yourself and everyone around you a favor: listen to your neuro when he/she tells you that you are fine.

 

[Boo Boo 621]

Yes, I am referring to Dr. Google. You actually made me smile telling me I'm being irrational. Thank you again.

 

[awieleba]

Boo,

It has only been over a week? I really would not get yourself worked up over this. Your issue with your leg could have always been that way and you never noticed because you never looked so close before. If you are still working out, then dont worry about this! I understand your fears but I really think you are jumping in a little fast here with your sx only being for less than even a month. I understand, when my twitches started I was freaked out as well, so I am not judging. I have been going through this for almost a year and You dont want to spend time on this and thinking about and reading about if you have just some twitching. Believe me.....

After your neuro appt, try to get on with things. I know what it feels like to have a baby and everything is great and then you think that something is going to happen to you. I went throught it as well with my baby. But I was sick and the hosp. on and off for 4 months with a newborn and 2 young ones at home. It can be scary but none of what you say sounds like cause for alarm. Your body goes through alot with a baby and do your emtions and hormones wich could be the culprit to all this.

take care

 

[MtPockets]

Here is looking forward to a good report from your Doctor. Believe them and focus on the love and care of your little one.

 

[Boo Boo 621]

Awielba,

It has been about a week or so when I first noticed twitching. I'm assuming it's only been around that long as I hadn't felt anything prior. And it's been since yesterday that I noticed the difference in my calves and began to panic. I see atrophy with sometimes subtle, sometimes more profound twitches. That's what going on that got me so much more scared in the past 24 hours. But yes, I am going to the doc tomorrow. I would like some peace of mind - the kind others see here that read my possibly outlandish posts.

I hope you are doing well now.

Happy Holidays to everyone!

 

[ktmj]

BooBoo, I have been a body-wide twitcher for 20 years. Started in the middle of the night my senior year in college. It was hard for me to ignore at first (had never even heard of ALS then) but you get used to it. Most benign twitching like mine came and went in levels of intensity.

By all means get it checked out for peace of mind, but benign twitching, especially in calves, is VERY common.

 

[Boo Boo 621]

If I'm told it's benign, I will be more than happy to have my calf twitch away all day and night! No one seems to think the slight atrophy I see means anything too scary. THAT'S why I'm having trouble relaxing about it all. Just when I accepted the twitching I inspected the difference in my calf muscles for kicks and grins and panicked. But yes, I've read calf twitching, along with thumbs and eyelids are the most common (benign( twitches.

 

[BethU]

Hi, Boo ... It should be about noon in Virginia now, so hopefully your exam will be over soon and you will be feeling better. As Wright and everybody else has said, there's really nothing here that sounds like ALS ...

If using this site to soothe 5 a.m. panic attacks works for you, great. There are also meds for that. I think you're on emotional overload from the new baby and this big new responsibility in your life ... and the panic attacks will probably resolve themselves as you become more confident in your new role as a mommy. If they don't, talk to your doctor about it.

Meanwhile, trust your neuro!

 

[Boo Boo 621]

Thanks Beth, my appt is actually tomorrow at 11:30. I appreciate it. It's unbelievable how this past week is like a blur. I have been terribly distracted, hardly eating and sleeping. Just terrible! I conceal it from Sabrina (my baby girl) but I do know they sense things and man, I never want her to learn to react to different things so drastically like her Mom has and can.

 

[BethU]

Hey, we all go through this. It's called "being human."

You're very self-aware, so I think you'll get past this once you get confirmation from the neuro. Have a great holiday.

 

[planningguy]

Hi BooBoo,

Hopefully you can find some nice pleasant distractions until your appointment and beyond.

Benign twitching is extremely common. In one of the past threads a handful of us commented on the "grad school twitch," similiar to Ktmj, and laughed about how for many of us it was in the exact same spot.

If you find yourself unable to stop reading, take a moment to look back through past posts and read one by Rose called "First Signs." What you'll find is that it is extremely extremely rare (to the point that some have even suggested it is an unrelated symptom initially) for muscle twitching to be the only initial symptom of ALS.

ALS is defined by progressive weakness and atrophy, with accompanying Upper and Lower Motor Neuron symptoms, that cannot be attributed to any other cause.

Hopefully you will have a good visit with the neuro. Take heart, there are hundreds of things that can cause the symptoms you describe. Here's hoping for one that's fixed with vitamins, R&R, and decadent holiday food.

Take care,

Robert

 

[rose]

Hi Boo, I have just finished reading your thread.. here is the post that Robert (Planningguy) is referring to:

First symptoms?
There is another thread over on the PALs forum that asks how we were diagnosed. I'm thinking that the diagnosis process is usually pretty long and involved ~ more than many want to actually chronicle here.

If one wants to know the criteria that needs to be met to receive a diagnosis, there is a Standard called the El Escorial.

It says that to investigate ALS there should be: (listed in the following order)
Weakness
Atrophy
Hyperflexia
Spacity
Progression over time.

Testing to confirm includes:
EMG & NCV
Neuroimaging
Biopsy
Neuropathology

I wonder if maybe the question is more of what was the first symptom? And I think that for those that have been diagnosed, it is that the person discovered they could not do something they used to be able to do, and took for granted up til that time.

For me, I was unable to converse like I used to. (bulbar onset) For those with limb onset, it usually seems to be everyday physical type activities that gives them difficulties - anything from holding a plate or climbing stairs, to buttoning a shirt.... ~ not seeing how many stairs one can climb after one has noticed another possible symptom, or trying to measure if that dinner plate feels heavy. The realization finds the person, not the other way around.

For most, it is a gradual perception, rather than a sudden revelation.

Sure, there are other things, muscle cramps, fatigue, etc, but the reoccurring theme is inability or difficulty with accomplishing a voluntary movement that hadn't caused trouble for them in their lives before.

Also, notice that even though fasciculations are unsettling to experience, that they are not even listed by the El Escorial

Hope this helps

 

[Boo Boo 621]

Thank you Robert, but I feel like the fact that I'm more scared about the twitching calf muscle being smaller. THAT is why the twitches are scaring me even more. I did actually check out Rose's list. I just don't think I'd feel this bad if I didn't think my calf muscle wa dying as we speak. I'm so sorry, I just can't believe how scared I get at some moments.

 

[Boo Boo 621]

Thank you Rose. I just don't know if the atrophy I see in my calf was already there or the twitching made me check it out. I was hoping to rule out any atrophy and would've felt better about the twitches, but I was surprised and mortified that I could not rule it out.