Als

[tmasters]

Hi Boo Boo,

Be sure and tell us how your EMG went.

The book you refer to was also made into a movie called "Jenifer" (one 'n'). Check it out.

One last thing, don't let the cycler Bill's story scare you. Relax. Weakness comes long before atrophy. I don't recall if you had any weakness. Weakness is what I noticed before fasics, and weakness not fasics are listed in El Escorial for diagnosis. Fasics can be caused by many things.

-Tom

 

[Boo Boo 621]

I chickened out. I didn't go thru with the EMG. I scheduled one, then my baby developed a fever after running around during one of the coldest days we've had here outside the nation's capitol; then I rescheduled only to decide I just didn't feel like going thru with it right now. I just wanted to enjoy Xmas Eve with our entire family and wake up Xmas morning and enjoy more initimate time with my baby, husband and my visiting parents. So needless to say, I'm a nuisance I'm sure but I just want to say this:

As some of you kind folks know, I've been struggling with terrible fear, anxiety, bad thoughts and intermittent tears thinking I just had my first baby that we tried almost three years to have only to think I won't get much time with her ever since I noticed calf twitching 2 1/2wks ago. I know I probably need to go thru with an EMG to really rule it out, but I just think I'm going to try and skip it for now. I realize that if I make that decision then I truly have to be ok with it and try to put this out of my mind and focus on raising my daughter. What I'm wondering - and even though I've been given many suggestions, pieces of advice and insight about this - what I'm wondering is about fasics. Is it or is it not "normal" for ALS to experience twitches - they seem to be more like deep tissue thumps - that can't always be felt or seen? I cannot manipulate the thumping per se, but I think it disspates in different positions - whether being flexed or stretched, and I can't really tell obviously if it continues thru actual exercise. Both calfs - according to one neuro - appear to measure the same size when relaxed though she did notice the difference in the muscles when flexed, simply stating I'm assymetrical. I KNOW THIS IS REDUNDANT FOR THOSE WHO HAVE CORRESPONDED WITH ME PREVIOUSLY but I'm just really confused why this is going on and even though I always appreciate the hopeful, positive and kick-me-in-butt words, what's the deal? I know the twitching is happening mostly because I feel for it. Sometimes I can feel it relaxing but not all the time. I did experience all-over body twitching the past few days as well but think that has calmed down. I get myself so worked up. I am making an appt to go to my family doc and talk about my level of anxiety and hypochondria so I am not ruling that option out. but doesn't my calf thing sound strange? Am I supposed to keep checking for the thumping if I don't see/feel it all the time? How long so I let this go? Am I supposed to keep measuring my calf and working it out more than the other one for fear of atrophy? And since the term "weakness" seems so unclear to me, I will let you know that I am still able to do everything as normally as I always have.

Thanks for listening again. Hope everyone is having a wonderful holiday season!

 

[Zaphoon]

Boo,

Please stop the measuring and the constant watching. If you are going to keep making EMG appointments and break them, tsk, tsk! That is naughty and you are for sure on Santa's bad list for next year.

Lumpy coal and sticks for you!

You are either going to have to get serious with the medical community and get to the root of your problems or just stop fixating on them entirely. I like to dwell on visions of sugar plum fairies dancing in my head. Pink tootoos and all!

Zaphoon

Happy New Year!:grin:

 

[planningguy]

Boo Boo,

I agree with Zaphoon (well maybe not about the part about the fairies), and think he told you in the most polite way possible that you need to get a grip on your situation. If the twitching bothers you, schedule yourself for an another EMG, keep the appointment, and get the peace of mind you need. Do stop trying to check yourself for atrophy, you'll only tie yourself in knots (in more ways than one).

Muscular twitching can be exacerbated by stress, so do follow up with the healthcare professional of your choice on the anxiety issue.

Take care,

Robert

 

[BethU]

Boo Boo ... I'll join the chorus. We are not the ones who can give you medical advice or "explain" all your vague symptoms to you. We are not doctors ... most of us are patients or caregivers just trying to get through the day, or people with serious symptoms who are trying hard to find an explanation.

You say: I KNOW THIS IS REDUNDANT FOR THOSE WHO HAVE CORRESPONDED WITH ME PREVIOUSLY but I'm just really confused why this is going on and even though I always appreciate the hopeful, positive and kick-me-in-butt words, what's the deal?

Thanks for your patronizing little pat on the head for those of us who have tried to help you. Here's the deal: If you think you have a real medical problem, see a doctor and have an EMG done. DUH ! If this is "recreational ALS" ... something to scare yourself with and play drama queen ... please pick another disease. My favorites when I'm feeling that life isn't exciting enough are pneumonic plague and/or flesh-eating bacteria. They're even scarier than ALS.

 

[ktmj]

Beth you sure have a way with words. Flesh eating bacteria huh. That puts things in perspective.

 

[BethU]

I actually did convince myself that I had that once ...

 

[wright]

Boo Boo

Are you kidding me? You schedule an EMG to finally get some peace of mind and then you don't go? You then come back to this forum and ask the same questions that were already addressed . . . because certainly we would know better than a neuro and an EMG? This has to be a joke.

This is what I think might be happening: you just had a baby and during your pregnancy you were getting all of the attention. Now that your baby is born, you are no longer getting that attention and you are seeking it elseswhere . . . here. Correct me if I'm wrong. If I am wrong, please tell me what your problem is and why you won't listen to reason.

FOR THE LAST F-ING TIME: WEAKNESS PRECEDES MUSCLE ATROPHY . . . AND . . . NOTHING YOU TELL US INDICATES YOU HAVE ALS. You don't have weakness, you don't have muscle atrophy and you don't have ALS. If you don't believe me or anyone else on here, then go to your neuro and get an EMG and another clinical evaluation. Then when you don't believe that neuro, go get a third opinion.

If this sounds a bit harsh . . . well, that's because it is, because there are just certain people that need a bit of harshness to get through to them. It's nothing personal. Please get a grip and get some help.

 

[olly]

ouch beth and wright,that hurt and it was not aimed at me.
boo boo,i was diagnosed with mnd but i have had a long slow progression and most dont get that so i am very thankfull.
believe it or not despite a neuro at the mnd clinic telling me my neuro has done enough tests to rule everything out i still keep searching for other possibilities.
why? even though i have mainly umn and some slight lmn symptoms i was diagnosed mnd because they could not find anything else after years of testing,my neuro says i am a autopsy case(not quite in those words).
i am researching mitochondrial desease at the moment,a metobolic desease that causes symptoms like als.
twitching does not mean a thing,it is not the big picture of the als jigsaw,just a piece.
i only realised the significance of my odd twitching after diagnosed and joining this forum.
get your emg then look at other possibilities with your neuro,be warned you could be facing a long long time before any diagnosed.

 

[Boo Boo 621]

To be honest, I do not feel like I'm lacking attention at all..and THIS is certainly not the kind of attention I want. I'm sorry. The thing is, I went thru a time about 5 years ago where I was having weird neurological symptoms and I actually went thru an EMG, nerve conduction test of legs and hands, a sleep study whose purpose was to see if I was having seizures in my sleep, etc., etc. I had vertigo, to which I had inner ear surgery to correct it after a long year of trying to narrow down the cause of the vertigo. I was on snti-seizure meds, all the while not having any seizures. I had bad migraines. Anyway, in the meantime, I read the internet, went from doctor to doctor and learned a lot - too much I suppose - about all sorts of diseases. I had a bad hand tremor during this time so I thought I had Parkinson's. (My great-grandmother had it.) Then I had some numbness which I thought was MS. After working thru all of this hypochondria - and also having tons of tests - I came out fine and learned to calm my mind thru exercise and yoga and counseling. When I started having twitching a few weeks ago, I happen to already know it could be a symptom of ALS. I didn't know how high on the totem pole it was or whatever, but I just knew it was something some folks COULD experience. What I guess COULD be going in with me is that I'm still at home with my baby and I started paying more attention to things I didn't before - or hadn't in a while - like the little things your body is capable of doing on its own which could be harmless and maybe mean absolutely nothing. When I found this site and that there were people scared like me asking others for advice or help, I felt comfortable because there are only a FEW people I would share this with in person and yes, they all think I'm ridiculous. When I asked "what's the deal?" it was more rhetorical; a sort of venting. There were actually other reasons I didn't go thru with the EMG than just me being a freak about it. I was embarrassed by my behavior about it but since I kept it from my husband, I shared it here. My father was here for the holidays and not too long ago, he had a headache and truly thought it was tumor..my mother gets furious with him. I guess he passed that "think the worst" gene on to me. I AM sorry for wasting time and space here. Again, I don't want THIS kind of attention at all. Maybe I'm a bit post-partum? Maybe I finally realized how precious life is having my own baby and sub-conciously frightened myself into thinking I wouldn't be here for her. I don't know. Either way, I appreciate you all talking to me.

 

[awieleba]

Boo~

I dont think that you are in need of attention from having a baby. But, you could be having a lot of anxiety. You said that you tried for a few yrs and then got your baby. You may be so happy to be a mom that you now fear the worst. Kinda like when everything is going good, we are waiting for it to go bad. I had a lot of anxiety after my 3rd baby. I did not want or think that I needed an anti depressent. With my first 2 babies it was so easy and the tiime of my life, I could not understand why this time it was different. But I wanted a girl so bad and Igot one! I think I was worried and anxious. Well, I took lexapro and it has helped me sooooo much. I think that should be a start for you.

AND, I dont even know why you are thinking of an emg if you have a twitch for under 3 weeks and no other symtoms! Why put your self through all these tests? You had a baby and your whole body changes and hormone functions and even anxiety. PLEASE, do not worry about this. IF all you have is twitching, look into a bfs forum. My sister had body wide cramping, real painfull for a year. If she would have looked up cramps, it could have led her to this disease as well. Her cramps are gone and she is fine. And ALL people have different measuring limbs, more so from side to side.

take break and go to bfs site if you are worried, get on an anti anxiety med and be happy and love that baby!

Good luck,

april

 

[Boo Boo 621]

Thanks April. I agree with a lot of what you said - our posts just crossed so I think I explained myself a little better. At least I hope so. I'm an intelligent woman with a great family and WONDERFUL baby. I know anxiety has been something I have contended with my whole life - I used to have bad anxiety/panic attacks - but I've always been able to ward them off, med-free. These past few weeks I have made myself crazy. I HATE that I have been doing this. I know I control my brain but it hasn't felt like that too much lately. I am making an appt to go talk to my family doc about this. Thanks again.

 

[lydia]

BooBoo,
Just to springboard off what April wrote....I remember having my first child. Becoming a parent was so amazing. Everything was so darn perfect that I felt there is no way this can last; something bad is bound to happen. Who has the right to be that happy? Parallel to that was preoccupation with my body and would it ever be normal again after gaining (gulp) 50 lbs ...Constant examination and sure enough-a suspicious mole appeared! Worries of melanoma consumed me, fears of leaving my baby without a mother ate at me...blahblahblah....ok I am getting off track.

New baby, new parent issues with mortality, perhaps a little genetic disposition toward hypochondria :lol:/ throw some twitches in the mix, and here you are!

I echo April--3 weeks of twitching is nothing. I wouldn't even bother with the EMG. I had twitches for over a year before getting a (clean) EMG. AND I only got the EMG because of the other physical issues that accompanied the twitching-which you know you don't even have. Try and relax and let go. But if you are going to be tormented by uncertainty then go do the EMG. It is completely worth the peace of mind it will undoubtedly bring you.

BTW (and for Olly and others too), I am also reading up on mitochondrial disorders and last night read about fasciculations being present with some of them.

Take care all,

Lydia

 

[awieleba]

Hey all you researchers~

Let me know what you come up with! I barely have the time to be on this site with the 3 young ones, any researching is out unless it is for my kids purpose.

BTW, are mito disorders any better or worse? I dont even have a clue as to what they are.

Thanks

april

 

[lydia]

April,

My sense is that I will take an adult-onset mito disorder (there are many) over the many scary alternatives that are out there. The childhood versions are absolutely horrific, but for those who don't develop one (or show it) until adulthood, they seem do-able; manageable. You live. Some with drastic life changes, many with milder changes. The ones I have been reading about that sound the most like what I experience are managed with supplements, diet, exercise, and pacing of one's physical activity. Failure to adequately manage can result in episodes that require medical intervention and can still result in nasty things like renal failure, ER or ICU visits, even death. Even at my worst, I think if this is what I turn out to have, it will be considered a very mild version. I am supposed to be seeing a specialist in this. It has been 4 weeks that my GP has been trying to arrange it. Apparently there is some protocol that has to be followed and I have to go back and see him first for some type of specific evaluation and then he sends me on to the specialist (I think...). In the meantime I am out of town for a few weeks, and out of frustration, I asked couldn't we just move forward as if it is that...and do the supplements at least? What harm could there be? So that is what I am currently doing. Keep you posted.

Sorry Boo Boo for getting sidetracked on thread.

Lydia