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miss91

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Hi Everyone,

I posted the other day with some of my symptoms and fears of ALS. Again, I am so impressed with everyone dealing with ALS on this website, and the caregivers, and your ability to "go on" in spite of what is happening.
Basically, I'm just scared. I mentioned some of my symptoms the other day, including how one month ago I had nausea/exhaustion/diarrhea which turned into DEEP fatigue, 10 lb. weight loss, constant fasciculations all over, lump in throat, sometimes hoarse voice, weak feeling foot and fingers, etc. One month ago, I was dancing at a wedding and having a great time, so I don't understand how I can sit here miserable one month later.
The thing that has changed is, now I can actually SEE the foot atrophy in my toes. I felt a pain there two weeks ago, then noticed the toes felt weaker when I walk (terribly now). The feet look the same, but the toes on my right foot are obviously thinner. My shoe has felt loose on that foot for a few weeks but I didn't think anything of it. And last night at my son's baseball game, I found my "weak" pinky and ring finger wouldn't even hold the umbrella. My left hand has become dominant.
Another frightening occurence is the fact that I've been a TEETH GRINDER all my life, my back teeth are worn down to prove it. Now, I find myself waking up at night with my jaw totally slack, unable to shut for more than a minute. I had constant fasciculations in it the other day, now it's all loose and feels weak when I'm trying to sleep.
I went to my first appt with the neurologist today. He tested my reflexes, which he said seemed to be ok (my weak foot didn't do ANYTHING when he tested for Babinski). However I pointed out my spread out, weaker toes and he didn't say much, other than to schedule me for a 3-limb EMG and some other muscle test. He left the room then but not before he said, "Well the EMG will show us if it's ALS or not". Basically I left the room, and my husband called me, and I just started crying. I feel pathetic.
I am NOT trying to be a big baby or paranoid. However as I sit here I'm getting the same twitch I've had all day, in my thigh, and I am looking for any reason to think it's NOT ALS. However, the OBVIOUS wasting in my foot, the fasciculations, etc. make me realize there is no other answer to my constant decline other than ALS.
I just wanted to vent and let it out. I even bought 3 photo albums yesterday so I can make picture memory books for my boys, because I"m THAT SURE of what is going on with me. I'm just so scared and I'm sorry if I come off as a wimp but what else can I think?
I'm now thinking back, wondering if I had signs all along that I missed. I DID fall twice when I was dancing at the wedding, not to the floor, but I tripped. YES I've been tired for months.
THANK YOU for listening to me. I pray that I have the strength to be a normal parent to my kids, and a normal wife to my hubby, if I get the DX I'm so, so scared of. I'm a Christian and have been praying, but I can't seem to lose this fear. I pray God blesses every one of you taking the time to read this. If nothing else, I've started saying a prayer for each person as I read individual posts.

M
 
Hi,
Wow that doc was kind of defeating huh? I would think he need's to start ruling out a lot of stuff before he goes to ALS.. It could be a lot of other things, viral, spinal, disk, vitamin, not to mention a lot of other things.
You seem like a really nice and kind hearted soul, and I know exactly how you feel, but if in fact you do end up with this disease, which I am thinking positive that you do not, you will find a way to be strong and take it one day at a time, sometimes it is harder than others, but I just try stringing days together and they become weeks, and I look back and think ok we made it this far, we can do it.. We are here for you.
 
Thanks for your kind words! The worst part right now is that I've been able to talk myself out of ALS, until I saw my skinny toes and shaking pinky finger. I've already had MRI of the brain, CAT scan, blood tests, etc. and every time those come back "NO", it's painful.
 
Hey M,

Don't feel pathetic. I will bet there is not one person that got the ALS diagnosed that did not cry shortly thereafter. It is a nasty thing to be told.
I hope that the EMG's tell a different story.

Now it the time to forget the past , its over with. Time to live for the future, make each day the best you possibly can.

Start gathering information about the local ALS chapters , as they have many good resources to help you . If you dont have to use it , that is something positive.

Take it one step at a time. Each one with a positive attitude.

Its all about attitude and energy.

Signing up to this site was a good thing. There are many caring people here, and a wealth of helpful information.

Glen
 
Did you ask him about Celiacs? Did they do any tests on you for this. I am not a Dr. but I have done a lot of searching on my own journey and your case sounds a lot like Celiacs, especially the stomach issues combined with the neuro issues.
 
You got it Glenn, even Lou Gehrig cried heck.. He even thought he had a fifty percent chance of not getting worse, or just walking with a cane in 15 years, and still he cried. It takes some real getting used to like Glenn said. But it is like anything else you just adjust and make it, and we are seeing treatments in the horizon, please try to relax, maybe get something for anxiety, that seem's to be what help's many of us over the hard hurdle of acceptance and such.. You still do not have ALS until proven otherwise..
 
Yes, I was told yesterday by my GI guy that I do NOT have Celiac's or a variety of intestinal trouble. He mentioned that he himself had a horrible case of gastro issues a few years ago and lost 40 lbs. and had fasciculations and EMGs....however I don't think he had foot/finger atrophy like I'm just now noticing.......Again, thanks everyone.... a little piece of me is still holding out hope that it's not ALS....but every day it seems like another thing is happening making it more likely. I was looking through my drawer for something just now and saw a picture of my youngest Josh (now 10) as a tiny 3 year old at Bible School with a sweet, trusting look on his face.....I think that's the hardest, thinking about me not being here for my boys (10, 13, and almost 16).....or causing them heartache....hubby has been the best up till now, we knew each other growing up, I got pregnant at 19 with our oldest and we got married shortly after he was born. It's been a good 15 married years together (together 17).....but he gets angry any time I want to talk about it, or try and make him face it. He says he'll worry about it if I get a DX and I"m "FINE". He even bought a moped (finances are tight) and takes off on it for a while every night to get away from me I think.
OK well - my oldest needs a ride to get a job application. I'm glad I'm here right now helping him. I'm telling you, if I get a bad DX you people are going to be needed and BAD.
Love to all.
M
 
M~

I know how you are feeling, been there and done that. Right down to making the memory books for my 3 kids. I kinda chuckled when I read that, not in a bad way but nostalgic way! I even started journals and video's and you name it. I asked my mom to make one with all her photos about me so kids would know me.......still here.

I had a BAD gastro infection that had me in hosp. on and off for 4 months! I had diarhea 20-30x a day, it was called C-Diff and then went into psduemembranous colitis. I lost 30 pounds. My twitching started at the tail end of it. I was aching and had thigh weakness prior to getting sick though. I have skinny toes, my shoe size went down, my left big toe wont point down (docs think no big deal, but I use to do pilates and toe pointed through whole class but cant do it know?). I lost muscle and have noted thinning on hands, feet, and ankle along with thigh. I have complete excersise intolerence, use to work out 2 hrs aday, 4x a week! cant do it, feel like wieghts on my legs. Guess what, my emg was clean. I have had 3 emgs over a year and half. THey stuck me in the areas of thinning and it was clean. I still cant understand it but it was. Also had a biopsy on top that only showed mild scatered atrophic fibers, basically normal according to als doc.I have been seeing an als nuero for over a year. Had every test known to mankind and no anwers as to my issue. Other than some 'vague' nonspecific and unidentifed mixed connective tissue or autoimmune thing but no name or diagnosed. So, I would not expect your emg to tell you too much. You may be like a few of us who have things going on but no diagnosed. and clean emg. There are ALOT of us with this. Some dont post anymore but are still out there. We have weakness but not clinical (it may feel not mild to you or me, but in respect to real weakness it is mild if you can do everything still) thinning muscles, twitching, and lump in throat and clean emgs.I am leaving out all the other sx. I just wanted to tell you to hang in there. I got on an anti depressent and it has helped me alot! I was just crying and thinking about not being there for my kids all the time. I was no good to anyone last spring. Never thought I would need one, but did. Still do.

I think what Hoping said is right on the money. I started living day to day and then days went and go to weeks. I will think, that was a great week with the family. I do things that I want and enjoy making memories and just loving everyday that I am blessed with. THe normal things of running a family and home that stress or irritate most moms, just make me happy. I have SOO much going on with my body and the fact that I can take care of my family is really a blessing. I try not to get sad about the things I cant do like tennis or pilates and focus on what I can do, like swimming. I just love watching the kids play outside or taking them to the pool. I dont get wrapped up in stress or feeling like I should be working or doing somethng else, just loving and living in the moment and that is the best medicine. And Ps, it took me a year to get to this point! I was wreck in the start......check out my threads.
I pray as well, but I have never asked to be healed, only for strength and courage.
Ok. I havent posted in awhile and then I just go on and on and on. you can pm if you like.

Blessings,

April
 
Miss91,

My heart hurts too. Mom diagnosed May 09. She is a good person, a great person. it's always that ones who don't deserve it, isn't it? My heart hurts too....

Hang in there. There could be some good news coming out of the EMG. You have 3 wonderful kids...remember that.

Kim
 
I am so sorry about your mom, she is another person I'll say a prayer for her (and you). Thanks everyone for all your concern.... April I don't know how to PM on here yet! Hoping and Glen, good words about being POSITIVE. However I don't know what I'll do if I do get a bad DX. I don't think I have a choice though! I guess I will cross that bridge when I get there.
You know, I'm 36, have had a great life so far (YES, so far!) and I really think this puts everything into perspective for me. In July of last year, I was told my Accounting Administrator job I'd had/loved was ending after seven years due to the company closing - wow was I upset about that. Looking back, that's NOTHING. Life is precious, you're all right, we should enjoy each day.
With that said, I'm still a basket case so again I thank you all for reading/listening to the rantings of a former college cheerleader/writer/accountant current mom/worrywart/wife. YOU ALL ROCK!
 
Your story is not the story of someone with ALS. You were already told that in your last thread. It simply does not strike that globally and that fast. It's as simple as that.

Furthermore, you don't have muscle atrophy in your toes because your toes DO NOT have muscle. They look thinner, along with the other "atrophy" you're seeing, because you lost weight. Even if you had muscle atrophy (which you don't) . . . and it was due to ALS . . . you would have profound weakness. Weakness PRECEDES atrophy. Once again, it's as simple as that.

The only reason your neuro brought-up ALS is more than likely because you mentioned it first. Given your symptoms and story, he/she would not have ALS as a differential.

Stop diagnosing yourself and calm down. You're already completely irrational and out of control. Wait for the neuro to do his/her job and let them get to the bottom of your condition. Right now, ALS should not be a concern at all because there isn't a shred of evidence you have it. RELAX!
 
Thanks Wright. I'd agree with you if it wasn't thinning in ONE hand, ONE foot, and I do have weakness in my foot which makes walking difficult. I feel like my "thinner" foot just isn't supporting me, and that the toes are useless. If walking felt the same and lifting things felt the same then I'd agree, but when you can see atrophy and feel it as well, it's just scary. I WISH I was a head case, or over-reacting, that would make my day. I'll try and chill out until my EMG, but this website has been the one thing that helps me cope with what I feel is going on.
 
miss91,
I think there are a few others on here who have that "weak muscles during sleep" thing going on as well as noticeable weakness.

I have yet to hear that from someone on here who was diagnosed with ALS.

On the other hand, I and some others who describe that here have been told we DO NOT have ALS, sometimes by more than one specialist. You too might join the ranks of the undiagnosed.

You mentioned being a Christian. During my 1.5 years in this, I have been able to build my faith 10x over what it was before (when I was self-sufficient) by focusing on building faith through prayer, study, counseling, reading books by great teachers of faith. I am learning to praise God through all things, just like it says in the Bible, although it seemed unrealistic before. No matter what happens, I would not trade this growth in faith for anything. Don't let the enemy defeat you - fight back!
 
Our bodies are asymmetrical, so the loss in weight most likely enhanced that asymmetry and it's simply now more noticeable. Again, your story is not the story of someone with ALS. It simply doesn't hit you over the head in a matter of a month; ALS is an insidious disease.

You state that your are not a head case and that you are not over-reacting: YES you are and YES you are. You didn't listen to a thing I said in my reply and aren't listening to a thing others are saying and more importantly, are not listening to your neuro. It's my guess that your neuro more than likely talked about so many other things your condition is attributed to and only briefly mentioned "ALS" because you had brought it up to him. But of course, you are disregarding everything else (all of the other rational explanations). All you're doing is fixating on a couple of things and somehow making the leap to ALS, when there isn't a shred . . . not . . . a . . . shred . . . of evidence you have it.

You have no medical background, so please don't try to diagnose yourself, because you are failing miserably at it.
 
I don't post much anymore but this I could not ignore. Enough Wright. Leave the girl alone.
She is scared. You were not at her neuro appointment. You have not seen her, examined her - and by the way, even if you had, you are not a neurologist either. So quit throwing your toys out the crib and give this poor girl some breathing space. It might not sound like ALS but even if it isn't, she has something going on and she is understandably frightened.
Wright, sometimes you ought to remind yourself of your 'head case' days when you kept posting asking questions about atrophy, twitching, weakness. No-one shot you down in flames. You got help and support here and as you became more educated about ALS (which took time btw), you realized that your symptoms did not point to ALS. But you cannot blame others for being in the same shoes you once were.
M - since you are new here, let me tell you that Wright is the Simon Cowell of the board. He can be very harsh with his words but he means well in the end. Cruel to be kind I guess. It's just that for the newbies, it comes across as incredibly mean spirited. Don't be discouraged. There are many scared un'diagnosed people here - many of us are young moms. We get where you're coming from. There are equally people on here who, as you have seen, have got the diagnosed you fear but still make room in their lives to help others. Some of the most caring compassionate people you could ever hope to meet. Hang in there. Hopefully your EMG will be clean and they will find the reason for your medical woes.
 
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