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boxer22

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Learn about ALS
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Hello everyone
First off I have been searching the web and am so happy to have found this site. My name is ashley and i am 24 years of age. I know you guys have been asked by lots of posters about als and what it does to your body in fear that they to have it, i cant say i am any diffrent but would sure love to hear your input and advice if you would kindly give it to me. Well to start off, i just had a baby 4 months ago. thats when everything seemed to start although i will say at the end of my pregnacy i was losing weight with no known reason but doctor was not worried. Any way after i had my child i started to get muscle spasms all in my legs and everywhere else in my body but 80% where/are in my legs. And of course since i had just had a baby everyone thought it was caused by an imbalance of some sort since i had lost a lot of fluid. They thought i needed supplements well they did not help and i had blood test which confirmed i was not low on anything so to speak. My spasms are everywhere and all the time, for instance 1 will be going on in my left calf at the same time i am having ones in my other calf and on my arm and chest at the same time. I have gotten them everywhere besides my tongue so far. I have a neurologist due to the fact i use to have really bad headaches and last time i was there i told him about them and he said your just overworked with the new baby and all and not getting enough rest. So i took what he said. My child is 4 months and is sleeping through the night and i get plenty of rest but they are still there everywhere all the time. Some seem a lot more forceful then others. Some i can feel but not see but others feel like some one is pushing my calf muscle in and out and yes i can see those! As far as wasting goes, i honestly really don't know what to look for, i mean one body part doesnt really look bigger then the other although when i bend my foot upward it looks like i have a dent in my calf on one leg but not the other? Beside that dent is a lump there that i have had since i was a small kid, dont know if thats why it looks like that. And as far as weakness i dont think i have any, i dont feel week. My husband was testing my hand and leg strenth and he said that they felt the same, but he is no doctor of course. At one point in the last 4 months i recall a couple of days were i felt like i had no spasms and i thought good its finally over but know they are back and stronger then ever. I know that part doesnt really said like als because i heard with als you dont go through stages where it goes away and comes back, is this right? I have heard of bfs (the benign spasms)" and i felt a little bit better thinking their was hope and maybe this is what i have but then got really scared agin once i read that when you move the muscle that is spasming it goes right away and if it doesnt those are more likely to be als spasms? Mine do not go away when i move the muscle so of course this brings me to the worry that i am suffering from als. Any advice? i have an appointment with my neouro but its not until the 12th and that feels like so long, please talk to me. I am so worried. Thank you for reading this long long post.
Ashley:neutral:
 
Ashley - I am so sorry for how you are feeling. I know exactly how scared you must feel because I have been there. But don't overwhelm yourself with anxiety because that can make the symptoms you mention worse. I know the symptoms are really there, but when you get upset about them it just exacerbates them. There are so many illnesses that can cause the symptoms you are having and the best thing you could do was to make the appointment with the neurologist. Also, be very happy you don't have weakness because that is the biggest symptom of als. Like I said, there are a lot of things that could be causing your symptoms, but maybe if I mention a few it will help ease your mind while your waiting for the 12th. Autoimmune problems can cause your symptoms or a viral reaction. Were you recently ill with anything viral? Are you having muscle twitching or cramping with pain? You mentioned benign fasciculation syndrome, so I think you must be having twitching, not spasms, right? If this is true, then you could be having BFS maybe as a reaction from childbirth and all your body went through. I'm sure many others will post with some advice for you (it's kinda slow on the weekend, so hold in there).

Please try not to worry, you have so much on your side...your age, no weakness, no atrophy. Most of all, you have a wonderful new baby. We are all here for you, so keep asking questions until you feel comfortable with answers. But remember, too much research can cause anxiety which leads to more muscle twitches! Good luck. Leslie
 
Ashley,

I agree with Leslie, try not to get too anxious. Try to concentrate on your lovely new baby. Is this your first child? It is amazing how each of our bodies differ when we encounter extreme stress - and having a baby and caring for it is one of the most stressful things a female can do! Do you have anyone that can help you out with your baby to give you a breather? Even if your baby is sleeping thru the night, I would imagine you still have stressful days with all that is required of you to care for your child. You may need a little break from the whole situation...a "just me" day.

Anyway, I'm sorry you are having difficulties and hope that you can resolve this in a positive way - it could be anything other than ALS.

We are here for you. Let us know what the results of your neuro appmt.

cj
 
When i say spasms what i really mean is fasciculations, for some reason i always think that they are the same but they are not. Sorry that i did not make myself clear i am just really worried. I have the fasciculations all the time 24/7. And yes i can tell worrying does make them worst. Maybe thats because i pay extra attention to them now. Also i can bring them on to it seems like, i mean if for instance i tighten up my calf i will have a
fasciculation right in that spot afterwards. does that said like als? The outlook for als seems so bad on the web but then you read about that man who has had it for 40 years and that really adds hope. I have 2 boys a 5 year old and of course my 4 month old i love them so much. My husband has been a big help. And another thing that seems weird is that it seemed to just come on over night like right after i had him it all begin. As far as pain goes, i do have more cramps now but it only seems to happen when i bend weird or tighten up. But they are brought on very easily just by the simplist moves.

Ashley
 
annmarie said:
Ashley, one thing I have read is that fasicuclations that cross a joint are not als, itsounds lke yours are doing that, so that is a good sign. would definitely think it seems like something viral, or some kind of imbalance, I think als is so far from likely that you should not worry, I think with all those fasics. and no weakness, you do not seem to have the hallmark of als, relax, I do believe your symptoms, and you have something going on, but does not seem to be als. Annmarie





When you say crossing a joint, what do you mean? Please explain. I thought people with als have widespread fasicuclations to? Do you mean starts in one joint and then spreads over time, or something diffrent? I know its unlikley that i have it but when your worried it seems to not matter very much. It really sounds like bfs besides the fact that the fasicuclation does not cease when i move the muscle, thats what really worries me. Thank you for responding to my post, it really does feel better to talk to someone else when i am so worried. I think my family is fed up with me.
Ashley
 
Ashley,

I had a baby (my first) 5 1/2 months ago and am going through the same thing- no weakness just fasiculations and sometimes dry mouth. I went to the neouro and go back Wed- but he said very unlikely due to age level and no weakness. He said it is lack of sleep. I know that when mine wakes up for even a few minutes during the night I get uo and then sometimes it is hard to go back to sleep.
 
pldo said:
Ashley,

I had a baby (my first) 5 1/2 months ago and am going through the same thing- no weakness just fasiculations and sometimes dry mouth. I went to the neouro and go back Wed- but he said very unlikely due to age level and no weakness. He said it is lack of sleep. I know that when mine wakes up for even a few minutes during the night I get uo and then sometimes it is hard to go back to sleep.


Hi,
I am so glad i have you to relate to. The same thing is going on with me. My ob keeps telling me that when i had a c-section that i lost a lot of fluid and need to take calcium and magnesium supplements and drink plenty of tonic water and that should do the trick. Needless to say i have tried all of that and it did not help in the least. So then i went to my Family doctor who took me a little bit more seriosly and she did a Comprehensive Metabolic Panel and i was not low or even near low on any of my minerals. So that flew out the window. Then i went to my neurologist about my headaches and while i was there briefly told him of my fasciculations which he blamed on lack of sleep and over worked. But i get great sleep and i dont over work and they seem worst then ever. I go back on the 12th about them. I really dont know what else it could be besides bfs or als or some kind of deffincy that i was not tested for. Its really nerve racking. And yes my fasciculations are there right upon wakening to, they seem to always be there!
Ashley
 
Hey girl,


I can feel your frustration and agony. Ever since these twitches progressed from my eyelids I have not been able to sleep well. I think the agony of eyelid twitches and searching the websites made my symptoms worse. I did some research and what I understood from patients who are diagnosed with ALS is that most patients present to the clinic with clinical weakness (ie., foot drop, wrist drop, falls, etc), not twitches. Through the years twitches have been associated with ALS, but for the most part patients do not see the GP for twitches. I am a 3rd year medical student and reading the literature has helped to ease my anxiety. I hope this helps and feel welcome to PM if any questions.

Rich
 
ucla2004 said:
Hey girl,


I can feel your frustration and agony. Ever since these twitches progressed from my eyelids I have not been able to sleep well. I think the agony of eyelid twitches and searching the websites made my symptoms worse. I did some research and what I understood from patients who are diagnosed with ALS is that most patients present to the clinic with clinical weakness (ie., foot drop, wrist drop, falls, etc), not twitches. Through the years twitches have been associated with ALS, but for the most part patients do not see the GP for twitches. I am a 3rd year medical student and reading the literature has helped to ease my anxiety. I hope this helps and feel welcome to PM if any questions.

Rich


Thank you so much for responding. It is very frustrating. I really dont feel week at all although i am not in the best shape so i could not go out and run 3 miles lol. But yes, not having any weekness is a good sign. I hate the way the twiches are always there and it keeps reminding me that something could be wrong. I go back on the 12th so i will keep you guys posted. Thanks agian.
Ashley
 
Ashley - I didn't realize you had a C section. Your symptoms could very possibly be related to anesthesia. If you go to the search link at the top of the forum you will find that many members have suffered fasciculations after surgery. Rich is right, most patients notice the weakness first, though there are exceptions, but that is usually the most noticeable and worrisome characteristic of als. Remember, don't get research anxiety! Good luck. Leslie
 
I did not have a c section but very traumatic birth. I was tested for mineral counts, problems with my thyroid, kidneys ,etc and everything came back normal. The neuro said it is most likely anxiety. I go back Wed and go for more testing because the problems have not totally resolved themselves. I am scard now because sometimes my mouth is dry and I am wondering if that is the problems swallowing. Then my husband points out that I am always sitting in wierd positions with the baby and maybe that is what is causing things .... Wish me luck!
 
ALS Clinic

pldo,

you should schedule an appt. at the nearest ALS clinic, just to rule it out. They are the experts.

Look at it like this, if you don't have it, or the symptoms go away, all you have to do is cancel yoru appt, if you need to go, it's already done.

It take weeks to get in, so schedule it now.

rgds,

jamie
 
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