Can it really be anything else other than ALS?

[mamaoftwo]

I lay awake last night thinking over all the symptoms I have, all the things I have learned here etc and despite the fact that after my initial post, some PALS responded saying they didnt think it sounded like ALS, i have a hard time thinking it is possible that it can be anything else.
Think about it:
- visible atrophy in the web of my left hand (which I am told is a classic sign for ALS)
-fasiculations everywhere incl. my tongue
- vocal cord paralysis (rt side only for now)
- that lump in the throat feeling that patricia described like I am constantly clearing my throat
- trouble articulating like my tongue is asleep sometimes
- cramps esp in calves

I know I have other symptoms that are less consistent with ALS, like the throat and tongue pain but I am really confused. I guess I feel like vmd, what else can it be?

i remember seeing a post by Lou that said "give me a reason to hope" or something similar. I guess I am feeling that way today.

[mamaoftwo]

ok guys, you arent exactly filling me with confidence today. Where are you???:(

[vmd]

mamoftwo:

I empathize with you as I know how difficult it is to play the waiting game. I am experiencing rapid deterioration, especially weakness. If you are not seeing weakness with your atrophy, then this is a good sign, or perhaps what you see as atrophy is not objectively there. Some of the other symptoms you mention (lump in the throat, articulation), could also be due to increased anxiety or excessive focus on these symptoms. I pray the situation improves for you.

[Al]

Sometimes it takes a day or two for more people to see your post. It's too nice outside to be in on the computer. Hey! What am I doing here? See ya later.
AL.

[mamaoftwo]

Thanks Al and vmd for responding.
vmd, there is no doubt about the atrophy in my left hand. It is so very different from the left and while I can still use it, it definitely cannot manage what my right can - I have excused that so far by telling myself I am right handed. But sometimes, there is just no escaping it.
I went for a manicure the other day to try to alleviate the stress. (for the first time in about 4mths I got someone to babysit for a few hours). Anyway, I am sitting there having my nails done and I could see the visible dent that goes all the way up to the middle of my hand. It sickens me to look at it. If you google hand atrophy which many of us will have done, ALS pops up immediately. I just dont understand why I can still use it at all. I read so many times that with real atrophy, there would be considerable weakness like you wouldnt be able to make a fist or put your thumb and forefinger together etc. I just dont know.
Al, I know I should be doing what others are doing - get outside. But I have 2 little girls here dressed up as princesses who just want to do ballet!
I need to try to focus on that and breathe a little deeper.
vmd, do you really think the waiting game is harder? I cannot imagine diagnosis day!! Where do you go from there? How do you guys do it? I just cannot think about not being able to take care of my babies, not being here to raise them. Terrifying to leave them so young without a mommy.

[patricia1]

The mind is a powerful thing,and in your case I think itsI making you crasy. Please dont dwell on your symptoms they are not debilitating Your hands may have been like that all your life,but you never noticed. I never looked at my palms until my neuro did. The lump in your throat can be anxiety,very common symptom in anxiety. As long as there is no weakness why worry Like I tell everyone If you do have ALS there is nothing you can do But if you dont ,Look at all you have missed worrying about it. I was much happier when I didnt have a DX. I mean I was anxious to know,but once I knew my life and my families lives turned upside down.even my attitude changed I became a sick person and mostly in my mine. Dont let that happen to you.Enjoy those little ballerinas they wont be little for long Pat

[ktroopa]

Mamaoftwo,

Have you had an EMG? If yes, what were the results?

Ktroopa

[mamaoftwo]

Please Pat - this is the second time you have told me that my symptoms are not debilitating. I have vocal cord atrophy - that makes it painful and difficult to talk. I have a myriad of other symptoms that you have read about. The conbination is debilitating.
My neuro says that I have a neurological disorder but he has yet to give it a name and in amongst that list is the possibility that I have an inoperable brainstem tumor (I already have a brain cyst that I have lived with for 4yrs and a heart condition diagnosed 5yrs ago). I am only 40yrs old and have 2 very young children. I have been married less than 10 years!
You, on the other hand, have been fortunate enough to see your children grow into adults, to see them have children of their own. You've had almost 40yrs of marriage. I am not saying that if you are older, then getting ALS is less of an issue. What I am saying is that there are a whole additional set of very very stressful challenges for people with young kids that have to be dealt with alongside illness, whatever that illness may be. Leslie, Jamie, Annmarie, Sammantha, Midnight, Mya, Jimercat and many more - we all have young ones.
So when you tell me this is not debilitating, please stop for a moment and rewind the clock. Imagine yourself at my age (or theirs) with youngs kids facing all of this and tell me that you would not be very upset. I may have anxiety but hell, who wouldnt have.
The physical issues aside (which ARE debilitating in of themselves), the enormity of the stress surrounding all of this is EXTREMELY debilitating. I am afraid, my husband is afraid and my 4yr old knows there is something wrong with mommy despite my best efforts to conceal it from her.
I don't need you telling me that I might have an anxiety problem and that my symptoms are not debilitating. They are to me. Enough said.

[Icanmanz]

ok guys, you arent exactly filling me with confidence today. Where are you???:(


Hi, mama! Read your post. I will say it again my friend, I am out of words, but I will give it my best shot. I can imagine what you are going through, even though I do not know the exact feeling, because I have never been there, but I do remember seeing the pain in my son's eyes, every time he would talk about his little boy. You know what's so twisted? His little boy's momma decided to start a new life overnight, but it's okay. Like I said I have my own life to worry about, my son's memory, my other son and his family, and my family. If that is what Judy (that is her name) wanted all along, so be it. I never saw any sadness in her eyes when my son was down, even at the funeral, she shed no tears. After the burial, she sent the little boy off to the sitter's, and she went to the island with her friends for the weekend. After she made it back she changed her phone number , and never heard from her again. Guess what? I am not chasing after her. Oh gosh, mama! Why am I telling you all of this? This is about you, sweetie! Anyway, let me tell you mama, anytime you feel lonely, send us a post, and we'll keep you company. We'll pray for you. May God bless you, and your beautful baby girls. How old are they? I bet they are cute. You take care now, and anytime you want to discuss something, no matter what, we are here! Praying for you-------------


Irma

[Midnight]

Well, I am not sure how to respond to that one, other than to say that you have to remember something for a minute. We are all human, carrying our own load of crap, and a lot of it, with our own pain, our own set of baggage and here on this earth trying to find our own way and it is hard to know what it is like in someone elses shoes unless you have walked in them. With that said...I do understand what it is like as a mom to look at your kids, even with the flu, and not be able to care for them. It is horrible, so to have the things that are going on with you I am sure all of us can understand that they are very heavy on your heart every time you look at one of your muscles twitch or put your babies to sleep or watch them dance, but I am telling you what I am guessing you would tell others judging from some of the posts I have seen you write...go kiss those kids and enjoy every precious moment you can. People walk in front of cars and we are luck we are here to type to each other.

[lhagsjr]

I dont think its fair for you to assume your son's wife doesnt care. she just doesnt know how to cope with it.

[Icanmanz]

I dont think its fair for you to assume your son's wife doesnt care. she just doesnt know how to cope with it.


Ihag---Oh Yessss! I know my son's fiance! We all know her. I kinda feel for her, but I am leaving things alone. I am not angry at her, not at all, I am just leaving things be. You just don't know the whole story. Like I said, and I will say it again, I have a lot of love and respect for my son's memory, he is the only one that mattered then, and his memory is my priority. If you only knew what my son endured with this woman, you'd be singing a different tune! God bless you!

Irma

[pldo]

Mamaoftwo,

I have a child who is not even a year old- I cannot imagine her growing up without her mommy. I need her and she needs me. I love her with all my heart. My husband and I are supposed to be able to watch her grow and then grow old together. I am worried about my symptoms which go through ebbs and flows. NO Dx- Talked to the neuro today and he told me that I should get tested for lyme and that it is most likely an allergic reaction to the birth control I am on- but he cannot say for sure.

I wish I could waive a magic wand and cure everyone. I pray to G-d that it happens on day. My father had an inoperable brain tumor- 2 as a matter of fact and he lived 6 years- what killed him was that when he had symptoms he did not tell anyone in time. He went into remission and when the symptoms came back, he did not tell anyone because he got scared! By the time he did it was too late. . . My point in telling you this is that there is hope. He could have been helped with things like radiation had he been honest. You are being proactive, they will find what is wrong!!!

[patricia1]

Please Pat - this is the second time you have told me that my symptoms are not debilitating. I have vocal cord atrophy - that makes it painful and difficult to talk. I have a myriad of other symptoms that you have read about. The conbination is debilitating.
My neuro says that I have a neurological disorder but he has yet to give it a name and in amongst that list is the possibility that I have an inoperable brainstem tumor (I already have a brain cyst that I have lived with for 4yrs and a heart condition diagnosed 5yrs ago). I am only 40yrs old and have 2 very young children. I have been married less than 10 years!
You, on the other hand, have been fortunate enough to see your children grow into adults, to see them have children of their own. You've had almost 40yrs of marriage. I am not saying that if you are older, then getting ALS is less of an issue. What I am saying is that there are a whole additional set of very very stressful challenges for people with young kids that have to be dealt with alongside illness, whatever that illness may be. Leslie, Jamie, Annmarie, Sammantha, Midnight, Mya, Jimercat and many more - we all have young ones.
So when you tell me this is not debilitating, please stop for a moment and rewind the clock. Imagine yourself at my age (or theirs) with youngs kids facing all of this and tell me that you would not be very upset. I may have anxiety but hell, who wouldnt have.
The physical issues aside (which ARE debilitating in of themselves), the enormity of the stress surrounding all of this is EXTREMELY debilitating. I am afraid, my husband is afraid and my 4yr old knows there is something wrong with mommy despite my best efforts to conceal it from her.
I don't need you telling me that I might have an anxiety problem and that my symptoms are not debilitating. They are to me. Enough said.
Now you have a inoperable brain stem tumor Did that show on your MRI Maybe thats what is giving you all the symptoms Sorry I didnt know about the brain tumor Thats even scarier than ALS.I have been reading your popst and all your test are neg . Your right my children are grow But my grandchildren are way more attached to me then my kids were, I been babysitting for them since they were infants because my daughter worked I feel sooooo bad for my grandchildren when they have to deal with their Nana dying. If I had a money to bet Ill bet that you do not have ALS Get busy living and stop worrying about Dying Life is short enough Pat

[ltr]

Pat. I don't think you are getting the point from mama's post. It's not about her having a brain tumor. Thanks mama, so much for your post. Me, Jamie, Annmarie and others have posted similiar posts, to no avail. Maybe yours will get through!! But, so far, it doesn't look that way. There are many of us here that are in your shoes and do know how you feel.

I think something that is hard for everyone to understand is that when you are undiagnosed, or don't have a clear diagnosis that it is impossible to get busy living and be happy. In fact, it's ludicrous to think a person can do that. They can pretend to do that, but that's about it. Clear tests don't mean crap and Pat, you of all people know that! It's pretty clear from the people on this forum that negative tests are just more of a problem and point toward als. Not having a dx causes a lot more problems, such as financial, not knowing what will happen physically next and being unable to plan for our kids futures. This has been discussed so many times, but sometimes needs to be reiterated.

[patricia1]

I guess I am going by my own experience, maybe I was a happy moron,I am more scared now that I know, then when I was waiting . Maybe because I never came to the forum while I was waiting or maybe I was a ostrich with my head in the sand ,but like I said Now that I know I am an emotion cripple thinging about my future,So whats worse. You all just dont get it And I am sorry about that. ALS is rare and very few people on this forum have it More dont then do I was trying to give you all hope I guess I came on too strong and you all are too consumed with ALS .GoodBye Pat

[CindyM]

Hello everybody. I have heard it said by more than one PAL that they are glad they spent the months before DX enjoying life. This is my goal, too. Not easy and some days I can’t do it but it is still my goal.

At the risk of alienating both PALS and my friends who are un-DX’d, I would like to suggest we strive for more tolerance. Yes, if you have been told you have MND then of course, from your perspective, anyone who has not been told that is lucky. And if you are falling apart weekly for no apparent reason you will be frantic.

We each have to find our own path. And individually, we will be more successful finding that path if we worry less about what some other poster has to say about the way we handle our experiences, don't you think? At least it seems so to me.:) Cindy

[Al]

Hey guys. We are all different here. As different as these diseases are to each of us diagnosed or not. I think we are losing sight of what David and I kept this site going for. It is about support, information and friendship so that each patient or caregiver can know they are not alone. It is stressful having something going bad with your body. If you know or don't know what it is doesn't make it any easier. We're losing sight of that. Could everybody take a deep breath and try to relax for the weekend. Thank You.
AL.

[mamaoftwo]

Well said Al!

[myooshka]

I think what we should be dong is supporting each other in our time of need. Not trying to play doctor and tell each other, you probably have this or that when none of us knows. We are to be here for each other in this scarey time. We are all scared. we need support, not judgement.

[JenniLee]

Mama;

I feel your worries and fears. As you know, I have 2 precious ones too.My dx was very quick. In fact, I made the appt to see a neuro, not my AP. I thought my speech was from an inplant procedure I was in the middle of. And when I mentioned to my AP that my finger wouldn't straighten, she ASSURED me there was NO major problem and I probably had a pinched nerve. HUH! I really thought I had a problem that I could "solve". What I have come to learn now is I may not be able to SOLVE this one; I have to work with it. I know how stressed you are, so my advice is maybe you need an anti-anxiety, for a little while just to take the edge off. If it might be the birth control, go off of them with the help of your OB. You need to start somewhere before u go anywhere...my Dad keeps telling me to start in my head....get that focused, find a way to control the anxiety, and FIGHT! So, please, talk with your doctor about your anxiety and the pill. I understand your fears..and no matter what u r not alone. I wish you health & peace!

Love, Jen

[ltr]

Jen - it is so nice to hear from you! Annmarie and I were wondering how you were doing just the other day. I know this must be a tremendously rough road for you, but are you coping well and do you have a good support network? Please stop by once in a while so we know how you are. We are here for you.

[jimercat]

Mama,

It is truly a burden facing the unknown. Since my husband was dxd I feel like I've been waiting for the other shoe to drop, frozen in time, not being able to move forward with my life. It is indeed scary to think about the future when you know you or your loved one may have a serious:cry: illness.

As far as the kids go: my son is now being very defiant and "acting out." He knows daddy is sick, but obviously doesn't understand nor could we expect him to understand, he is only 7. But he becomes infuriated with his dad when he cannot do things with him that he used to, things my husband will promise to do but then finds he doesn't have the strength. You cannot blame either of them. I thought I would be able to deal with anything that came up with my son regarding my husband , but now find that it is harder than I thought it would be.

I have to believe that there is a purpose for all of this and that our lives as they have played out will have an influence in a positive way on our son.

What I am trying to say Mama is that I feel for you and hope that your physicians will find out what is wrong with you and that it will be treatable.

Everyone that is affected by ALS has to dig deep sometimes to find courage. I hope everyone here can find theirs.

[ltr]

Jimmer - I have the same problem with my young teens and 9 year-old. They see me, I look the same, so when I can't do something I planned on they are disrespectful to me. They just don't understand, no matter how much I explain. I had them read about it, but I don't think that deep down they believe that that is me. They may even think this is all something that will just disappear. My 15-year-old daughter went to clinic with me last Wednesday and sat a chair away from a man with als. This is the first real dose of what neuromuscular illness is like that she has ever seen. She was heartbroken. She saw his atrophy and that he couldn't get up out of the chair without rocking many, many times. She heard him tell a clinician that "it doesn't matter, I've given up". I don't know if this changed her any, but she told me about it, so it left an imprint.

To a 7-year-old, probably none of this is real. Because you are such a caring and strong person, I know you will be okay with him. My heart just breaks for him.

[jimercat]

Leslie,

Don't know if you're a rock fan, but I thought of this song while reading your post:

(can't remember band's name only singer Axel Rose) "Sweet Child of Mine."

My life is turning around since my husbands dx and I have to look at it like this was meant to be and I can handle anything thrown at me. I would not change anything, even with the problems we face now...(well I wouldn't wish my husband had ALS)...but it has opened my eyes to new possibilities and my husband is beginning to think "larger."

I wish I could wrap myself around all those suffering with this and any debilitating disease and "make it all better!"

Please let us know Leslie how you and your children are doing. Your input is very welcome.

[CindyM]

Hi CJ. Everyone that is affected by ALS has to dig deep sometimes to find courage. I hope everyone here can find theirs.
What a great wish for everybody! Thank you for that. :) I hope you are able to get some rest tonight. Cordially, Cindy