My Journey

[Lorie]

First of all. Most of you know that I am a Caregiver for by sweet brother Tim with ALS. DX March 04. Tim had symptoms long before Dx.

This is very hard for me to post. And a few of you know about me already. So many of you praise me for Loving and Caring for my brother and the work I do as an ALS Advocate.

I would like to give you a little background about myself. I have Meniere’s disease (ears) since 2002. It started from the Shingles Virus in my right ear. I have Vertigo, Tinnitus and pain. I am clinically deaf in that ear. This was a hard thing for me to live with. In Oct 04, I had convinced myself I could not live with it. (if you can read between the lines). (we did not know Tim had ALS at the time). Then I got a big “Grip”. I needed to be here for my young daughter Amelia, now 14. And my wonderful husband of 21 years now. Little did I know at the time my brother Tim had ALS. So I was needed here for a lot of reasons. I am my brothers Lifeline, so to speak. He and my Family depend on me so much. So I am going to have the conversation with you that I had with Tim and my Mom and my brothers two weeks ago. They had no Clue. I did not talk about it. I could not burden my family with everything that is going on. And me being the Leader in my family. Please understand how hard this is for me. I am emotionally torn to do this.

My Journey: (Possible ALS)

In the middle of March of 06. I was a my computer, I started to have Fasic’s/Twitches. They felt funny and I froze for a moment. (of course I thought about my brother, who wouldn’t). Since I do not waller in my own problems and I keep going. I knew in my heart something was wrong. But as usual I just kept pushing and going. Then in July 06 I started to get mild muscle cramps in my Left Foot and Calf and Fatigue. I went to my MD. She sent me to a Neuro. He did Neuro. exam and EMG and NCS. DX: BFS and PN. I said ok. I seen him a couple of times and didn’t go back until late spring of last year 07. He sent me last June to a specialist that Researches Underlying Neuro. Muscular Disorders. Neuro. Exam, EMG and NCS. He said oh, nothing is wrong with you, I am going to have the doc. Do a Magnesium, Potassium and Calcium, B12 test. I said ok, Have my MD do it. She did. It was normal. I knew it would be. I told her I was going to keep her informed but I wasn’t going back to any Neuro’s unless I had to. But I know something was wrong. Also I have already had three MRI’s from the top of my head to the lower back in two years. Results: Clean

Feb 08: The cramps had gradually sped up and had always continued with the Fasic’s/Twitches. I have a lot of Cramping (not regular back pain) in lower back. Tightness/spastic in my Legs. I went to my MD. I told her, something is wrong. I need to go back to a Neuro. I told her I was not going to see Tim’s MDA/ALS Doc. I do not like him. So she knew a Neuro. personally in the same group. She had him come to the hospital to do my EMG and NCS. Results: Consistent PSW”S /Fibbs in EMG. No Neuropathy.. A lot of denervation in my lower back. So I go back to my MD for test results. If spinal Stenoisis is ruled out with MRI. (already had it). Results point to MND. So I go back to the Neuro. for exam. Extremely Brisk Reflexes. Slight Atrophy in my Left inner ankle. And light Atrophy on my right foot. And some weakness. He is concerned that I am exempting the same pattern my brother Tim did. Except Tim’s lost his hands first and then arms. I said ok, what we do now. So on March 28th I had a Muscle Biopsy. Two inches out of my right/back Calf. I had my stitches removed yesterday. So I go back to the Neuro. on the 23rd of this month for results. He will send me to Dr. Oh in B’Ham, AL. Four hours from where we live. He is also the one studying my Biopsy. My Neuro. is great by the way. So was the Surgeon.

I am now experiencing a slight kind- of- loss of sensation in my Left Foot and Calf. Now that I can talk with Tim openly. He said he experienced the same thing when loosing his hands and arms.

So my husband is upset with me now, because I didn’t talk about the way I have felt for the last 6-8 months. But I always put others before me. And besides without the test results, why dwell on it. I went to all the Neuro. and Doc. appointments by myself until the Muscle Biopsy. I seen no reason in talking it about and upsetting anyone until the test results starting combing back abnormal.

So as I may very well be facing my own Battle. I need support. I ask myself, how did I get here? What am I going to do? The one thing I want do is give up. Too many people depend on me. Caring for my brother at the same time and now this to! I have a lot of emotions right now. So I ask you, not to give me opinions on DX. I am in reality and letting the Neuro’s Dx me. If you would like to ask me questions or comment, that will be fine.

Thank you for being here for me. You are such a great group of wonderful people.

Lorie:( Very sad right now.

[mamaoftwo]

Lorie - i am so so sorry to read this. I guess there aren't many of us online because you would have a slew of responses by now otherwise. You are such a valued member of this little community and you know that everyone here will do all they can to support you in this journey. God bless you for not wanting to burden anyone with this but the stress of keeping this all bottled up inside is not good for you. Your family needs you of course but that means that you need to look after yourself too. My thoughts are with you.

[trying to stay positive]

Lorie,
I just finished reading your post and I am still in shock. I'm sure I will be able to think of something to say and I'll post again, but for now I want to say that you are not alone and I am praying for you.
Sincerely, Linda

[Icanmanz]

Hi Lorie. I just read your post, and like the other posters, I am shocked. Is your brother Tim the first one in your family that came down with Als, or are there others? I am out of words right now. I know it is hard, but we must face whatever the Almighty lays down for us. Nobody wants this damn disease, and I hate it so, because there is no cure yet. My dear son left this earth waiting for good news about a "cure," and it never came. He is still heavily on my mind, but I have strengthened. I still miss him so, and I still ask, "Why him?" The pain will never go away. I guess my frequent trips to the cemetery is what is helping me. I hate to say this, but "Mom" is the only one that visits his grave on a continous basis. Sometimes I go out there just to stand over his grave, say a prayer or two, and oh yes, place my hand on his picture. He was, and still is very special to me.

Lorie, I will be praying for you and Tim, dear. Let's not forget, that our Father knows just about how much we can take. I know, dear..........................yours is overwhelming. It is way, way too much. PM me anytime, and I will be here for you! May God bless you!

Irma

[Lorie]

Irma, Tim is the first. That we know of. When I talked to the Neuro. He said when Tim became Dx with ALS, that became a part of Family history. And after reading again on the ALSA site. A history can be a Parent, Aunt or Uncle or a sibling. I was born after Tim. We have been through Hell and back so many times. I will began to Blog about us and our family. I will continue on just like I have. It appears to be slow moving like Tim's. I am just cautious when walking. Getting up and down. The cramps are bad. Of course the Fasic's don't hurt. They are just a reminder.

I knew this was going to be a shock to a lot of people. I just thank you for being here for me and understanding.

Lorie

[olly]

i am absolutly gutted by your news, i just can't understand how such a tragic thing can happen . you are such a valuable person to all of us,not just your family.
i have been sat here looking at the screen for the last 10 minutes trying to figure out what to say, i have so many emotions going on right now and the worst thing is this will be a 100 fold for you and your family. i am a christian and i know god has a plan for the future and i try desperatly to keep my faith, but devestating things like this that happen to such special people really tests my faith and i need to cry out loud WHY?
dont give up lorie, let us all pull together and love/support you in any way we can. its time to think of yourself more and let others help you for a change.
i have always marvelled at the dedication to your brother and to the als fight, the caring support you have shown to me and others on this forum, remember your not alone and are truly loved by all. i will try and pray for you and your family with all the faith i can find in my heart.
god bless lorie
caroline

[vmd]

Lorie:

I will keep you in my prayers as I keep all the members on these boards. Like you, I have kept many of my symptoms from family because I do not want to worry them. I have told others (non-family), but have not specified that I fear it is ALS. I especially do not want to worry my daughter and my ex-wife. I am the primary financial supporter for both of them and I need to keep working.

[wright]

All I want to say for right now:

You have helped and cared for so many in your private life and on this forum . . . you can be rest assured that we will be here to help and care for you. Don't be afraid to lean on those who are willing to help.

[Lorie]

Thanks so much for your Caring and Support. I keep wanting to cry, but I couldn't until I read your post Caroline. Then the Tears came. Caroline, I know what you mean about Faith. When I post on my Blog, you will see how our lives have been since childhood. Why do we deserve this? I have no reasoning for it.

VMD, You know then that I know how you feel. If you ever want to talk, just PM me. It was hard to keep this from my Family. Especially when Tim would say things like. What did I do to deserve this? I told him he didn't do anything. I wanted so bad to let him know about me. But I just couldn't, until I had to.

Wright, Thank you. I will depend on you Guys/Gals more. This Forum has meant so much to me. And I joined last year because of Tim. And I ignored myself. I just kept going, you can suspect this Disease, until the test start coming back abnormal that points to it.


I am very Greatful for having you all!

Lorie

[stevef]

Lorie

I am so sorry you are going though this. You are such a wonderful person and I pray for you that things will get better. I also wnat to say Thank You for all you do in trying to gain awearness for ALS please continue to do what you can in the best of your abilities. It is hard to keep the faith when bad things happen to good people but try and know God is there for you and Tim

God Bless
Steve

[paula-jane]

Lorie,

I just don't know what to say. You are only too aware of this disease as you continue to lovingly care for your brother. You are absolutely correct. ALS has to start it's history somewhere...
You are in my thoughts and I hope that you continue to let this forum support you. When you care for others, it's hard to believe that there is anyone left to care for you. I guess you will just have to let them in on your thoughts and fears because you are loved by your family and you are so worthy of their care.

[cukita99]

lorie,
im sorry, why us good persons. i went through all my testing on my own n had never heard about als untill i was dx. my family dont understand what als is. they tell me i dont try to help myself. i hate when they say im lazy n doont try to talk. they think i dont put my part. it is so hard for me. i will try to help u in any way i can like u help me. will keep u in my prayers but i feel like god ignores me. take care. love lupe

[Icanmanz]

Hi cukita, just read your post. Please don't think God ignores you. He loves everybody. He loves you, and we love you, even if we have never met. We are all praying for each other. Bye dear, and God bless.

Irma

[cukita99]

irma, so much has happen to my son n i, that i feel like the more i pray the more im tested. dont know how much more i can take. i still have faith.

[vmd]

Lupe:

Yes, God will test us, but we also need to have faith that He will give us the necessary tools to survive such tests. I'll pray for you and ask you to do the same for me.

[olly]

lorie
i am so sorry i made you cry, like you and vmd i don't discuss my symptoms and anxieties with my family. my family are not very close,i have to rely on my 19yr old son alot but don't tell him everything so i either keep it bottled up inside or i come on the forum. you all probably know more than my family does. i am a very private person but i feel able to express my feelings more to you all as we can understand each other. the love and support here is so overwhelming.
cutikka
god loves you more than you know even though times can be bad and it does not feel like it. we all love you here and know how you are struggling to cope and we are always here for you.
god bless
caroline

[Al]

Hang in there Lorie.
AL.

[rick/Wpg]

Awwww...Lorie. Our thoughts and prayers are with you!
Rick & Joan

[Peg B]

Dear Lori,

Please know you are in my prayers also. Sincerely, Peg

[CindyM]

Hello my friend. DO you see how many lives you have touched? Now you know how much we all care, if you couldn't guess before. TOgether, we will weather this. Hugs, Cindy

[rose]

Lori, I'm so new to this forum that I hesitated to respond to your post. I just wanted to let you know that I'd been reading back through previous posts on this board, and you have stood out to me as someone that is compassionate and strong. I'm so sorry you've got this to face! I hope you know that you're not alone in this. Take care, Diane

[Lorie]

Rose, Your thoughts are welcome. Thank you for caring. I try to accomplish good in everything I do. I have always been that way. I have always put myself at the bottom of the list, by my choice. If I never made it to me, it is ok! I will still be the same person I am.

Cindy, Yes I think I see the impact I have on people here. And ALS its self. It humbles my heart. All I have ever wanted to do is help people. Even before Tim's DX. I am strong but also Human. You know what I mean!


Everyone is so remarkable, if the "Normal" could just see us. They don't know how good they have it. But we have a very good community of Friendship and Support.

Love you Guys/Gals!

Lorie-

ps Don't miss my updated post about the MDA interview for the Telethon. It is on event announcements. We are on our way!

[northerngirl]

Dear Lorrie,
I pray it is not, hang in there. your a special gal!!
Waiting with you for result!

[Lorie]

I feel like I am waiting on a Sentencing hearing. But I vow to remain Strong and Positive. I heard something on TV the other night that makes a lot of since. It is very much how Tim and I are. This is how it was said:

In Suffering-You can become Better or Bitter. I will not become a Bitter person. And Tim has not. Although we all have our moments of despair.

Thank you for your Caring and Support.

Lorie

[fiddleplayer51]

Lorie,
In the short time that I've participated in this forum I have read many of your posts and know what a kind and loving person you are. You always have just the right words for others. Hopefully, you will find the support you need here on this forum and I hope too from the people you know where you live. Who can possibly understand why these things happen and why some people seem to get multiple burdens to carry.
Take care of yourself. Try not to get too tired. I know from reading responses to your posts that so many people love and care about you. Try to put yourself first some. Others can pick up the slack and they might actually benefit from doing so.
Blessings to you, Lorie,
Jane

[northerngirl]

Lorie,
I have been following your story and just want to say Stress does horrible things to our bodies. I feel like a bowl of rice krispies with all the twitches I have, forget the swallowing stuff, and the numbness and tingling. After all the Specialists I have seen it boils down to stress (Mom's ALS problems mostly) some tmj and perhaps tendinitis.
I pray this is what is going on for you as well. Has any one else in your family history ever had ALS before? besides Tim. Hang in there, I know telling you to try and not worry won't help. But try and find more moments to laugh.
Luv Laurie

[Lorie]

I would feel better if all my Test had not came back abnormal. The Neuro, himself said it didn't look good. On the other hand, I am hoping is is something else. Something that Tim can be tested for.

Saturday Night, I was honest with my husband and told him I was scared to go to my appt. on the 23rd. He said he is scared to. But he always hopes for he best, but expects the worse. He said maybe it is some kind of Muscular Dystropyhy that can be treated. But we would take one step at a time, and that he will be there for me through anything.

He said he had already seen changes in me before. It just didn't dawn on him. I still say I didn't want to worry anyone. I am Selfless not Selfish and have always put others before me. (my choice).

I have been Blessed with a Wonderful, Amazing Husband. He has helped me so much in the 23 years I have known him. Soon, I am going to Blog some about Tim's and my Lives. Believe me its all true. But here we are, Faithful, and Proud to be a Part of this world.


Lorie

[cukita99]

lorie, im praying for u n tim. i sure wish my sisters were more like u. i sure could use their help. i know they have their families but once in awhile they could come n make me feel better. a little visit..:cry:

[vmd]

You are very fortunate to have such a supportive husband.

[jimercat]

Lorie,

Sending positive vibes your way! Hope you will be able to enjoy your weekend.

We are all pulling for you!

Still wish I had a magic wand and could make all of this go away!

Hugs!

[olly]

i hope you get this message. i just wanted to wish you all the best for tomorrow.
i will be thinking of you and praying it is not als, but whatever happens you have lots and lots of people supporting you 100%. we all love you.
god bless.
caroline

[Shatzie]

You are in my prayers as your appointment approaches. For me the waiting was the worst part. It was almost, in a weird way, a relief to get a diagnosis, even though ALS was the last thing I wanted to have.

[crystalkk]

lorie,

Good luck tomorrow, hopefully it will something else.

[cukita99]

lorie, good luck, hope its just stress. wish i could b there 4u, but im here praying..
lupe

[wright]

We're all thinking about you, Lorie. My money is still on a disc problem. I'm sure taking care of Tim has had a toll on your lower back and could very well have caused your denervation. Our fingers are crossed.

[Steve100]

Good luck, Lorie :)

All the best

Steve

[Lorie]

Thank you! Your Prayers and support worked. The Biopsy was clean. I am very greatful.
Still no explanation on symptoms and test results. Since I do also have the Chronic Denervatrion in my lower back. The only other thing the Neuro. knows to do is another MRI on my lower back. This will be my third in two years. Not including my Head And Neck MRI. I told him I was ready. It will be monday morning. I told him I hope it shows something. I need relief. I cant take much more. He seen the Atrophy in my Ankle. My left calf is obviously smaller. I told him if it came back again not showing anything. I am done again until what ever it is gets worse than it is. But he still wants to keep me under his care. Please keep the support up. I am also going to get Tim a Back MRI. He says he never had one other than his Brain, because of a Brain Tumor he had in 2006. One of those I had done after we brought him home to Alabama.

Again, Thank all of you for the Prayers and Support this has been very hard for me.

For those that want to DX me. Listen....I don't need it. Dx somebody else. I am going to the Doctors like I should. And I am not the kind of person that is a Doctor Chaser. I am dealing with my self, My Helpless Brother and taking care of my Family. You do not have a Clue what I have on my hands.


Lorie

[olly]

i am so pleased about your news, i was so worried about you. i tried to leave a pm but you are full up.
i understand when you say your not a doctor chaser, i too am the same and find i can deal with my illness on my own, ive got better things to do.
i cannot begin to understand the pressure you are under in your life, i know you have been through a hell of a lot and i admire your strength, dignity and compasion for others.
i hope the mri will give you better answers and once again on monday i will be thinking of you.
god bless and tim
caroline

[vmd]

Great news, Lorie. I know prayers work, so please keep me in your prayers.

[asmileaday]

Lori, I don't post much on here but I spend a lot of time reading right now. I just want to say thanks for a link that you posted a while back that has a very good simply explanation of UMN and LMN and ALS.

We go next week and hopefully my husbands DX will be as good as yours.

[MtPockets]

What great news. I am so happy for you. We need you too much around here for anything to happen to you anytime soon. :):):):):):)

[jimercat]

Well Thank God for that GOOD NEWS!:-D

Hang in there. Wish I could do more than offer moral support.

Will be keeping all CALS and PALS in my thoughts and prayers!

[Lorie]

One of my Friends on this Forum sent me this PM today. This is how we are on this Forum. I have so many wonderful people in my life. I am so Blessed even with all the obstacles now and ahead of me and Tim.

So relieved

--------------------------------------------------------------------------------

Lori,
Oh how relieved I am to hear your biopsy did not show anything. As my mom always said, No news is good news.
I can imagine how in la la land you feel, but every day there is better than the alternative. How have you been feeling? Mentally I am sure you are a little less heavy, but physically how are you doing? How is Tim? I always think about what a strong women you are, and am amazed by your spirit and energy.
I think your attitude was the reason for your result, you have given als a opponent he does not like, and it is because of people like you, that a cure will be found. Thinking of you..


I could not have phrased myself better than they did. Although I was somewhat nervous. I didn't get into the gutter. And I want. As for their answer. I feel the same.
I continue to go on. If nothing shows up on the MRI. I will still keep going.
My Daughter and Husband and most definetly Tim and my Friends (all of my friends are right here) my ALS work is very important to me. I still have too much to accomplish.

Lorie

[cukita99]

lorie,
we need u to fight for all of us that cant do it any more. u r great n god will b with u to protect u so u will continue helping us. but u need to take it easy.

[fiddleplayer51]

Lorie, this is such great news. I hope you can rest easier now and it's great you've got a loving and supportive husband to help you through. Tim is so very lucky to have you. All the best to you and your family.
Jane

[CindyM]

Lorie- good news and bad news, huh? Good because they don't have anything bad to say but bad because you are still in limbo. Knowing you, though, you will cope with the limbo just fine.

I believe someday they are going to come up with a name for what is happening to people like you and me.. there are lots of syndromes and conditions that a few years ago they had no names or explanations for. Now we see them advertised on drug ads. So hang in there my friend. We will hang together, lol.:-D

[MtPockets]

Cindy your words brought back to mind something I think Benjamin Franklin said, "We shall all hang together or assuredly we shall all hang separately."
My version of this would be, "We can all hang in there together or assuredly we will fall alone."

For us, here on the forum, there is an inner need, of those with a common bond to share, uphold, and encourage one another, as we pass together through this life.

I say this not for the benefit of the ones who have been here for so long and already know it, but for some of the new ones who may yet not feel comfortable sharing their questions, thoughts, and needs. You and I are not alone in this battle. Yes it is a battle, almost a warfare day to day. Yet if we stand together, side by side, we can and will make it through this together.

This scripture comes to mind:

Ecclesiastes 4:9 Two are better than one, because they have a good reward for their labor.

Ecclesiastes 4:10 For if they fall, the one will lift up his fellow; but woe to him that is alone when he falleth, and hath not another to lift him up.

Ecclesiastes 4:11 Again, if two lie together, then they have warmth; but how can one be warm [alone]?

Ecclesiastes 4:12 And if a man prevail against him that is alone, two shall withstand him; and a threefold cord is not quickly broken.

[CindyM]

Thanks MT. We do have one of the best spots on the internet, don't you think?

[Lorie]

My back MRI came back fine, NO DISC problem or anything else. I go back to the Neuro. in June. I am in Limbo right now. The nurse that called me said he wanted to keep me under his care. Something is going on. Unless something changes before then, I am to call them. There is some change, but I am not worried about it right now. You will know what I mean if you read my post under Caregiver support group.

Lorie

[Lorie]

We're all thinking about you, Lorie. My money is still on a disc problem. I'm sure taking care of Tim has had a toll on your lower back and could very well have caused your denervation. Our fingers are crossed.

Wright, Write me a check!

No one has posted to my reply about my MRI. I have reveived a few PM's of support from a few of my friends. I know how I started out. I know where I am. When my daughter gets out of school next week, I am going to have to get on something stronger for the cramping. It is not BFS. My Neuro told me that you can have Fasic's in an EMG with BFS but not PSW's. I go back to him in June to be re-evaluated.

The reason I keep going is the goog "Lord" is keeping me going. He knows I have a purpose to follow through with- "ALS". Just like he brought my brother Dale back to life (with no clinical reason for him to be living). I am not deep into Religion. I am deep into "Faith". I am actually non-denominational.

Thanks you to the ones that have supported me and didn't take it upon yourself to tell me what I have or don't have.


Lorie

[wright]

Lorie, I didn't diagnose you; all I did was give you an alternative point of you. I apologize for doing that if I offended you. I was only trying to help. I have since learned from your comments that if someone doesn't ask for that type of "help" then I keep my mouth shut (which is why I didn't comment on your MRI, by the way). I am constantly being asked by people on this forum what I think about their symptoms, and those are the ones that I give alternative points of view. We are all different on here and therefore bring something different to the table. This forum is a wonderful place because of the diversity it has.

I'm still hopeful, as is everyone else on here, that what you have is not serious. Take care.

[lhagsjr]

I had the same problem with Wright. I feel like all he does is tell people they are OK but the problem is, most of these people are not OK. Me being one of them also. However, I dont think he does it with any harmful intent. Hes a good guy. The problem is the people on here(including us) spend most of our days being told we are OK by doctors, family members, etc when we know we are not OK. We come here to vent, not to be told the same thing..

[MtPockets]

For those wanting to know more about Mr. Wright, from another thread where I asked him about his background:
Wow Captain Al, someone just asked me that exact same question two days ago. What I have done is copied my reply to her and pasted it here for you.

Here it is:

My interest in ALS, you ask:

I've always had an "interest" in the disease, but that interest grew exponentially when I thought I actually had it. I knew enough about ALS to scare the crap out of myself but not enough about it to relieve my fears. I made the mistake of self-diagnosing myself and was then fortunate enough to find this wonderful forum. I came here as scared as the next person and found so much patience and support as I presented my symptoms and concerns. I subsequently saw three different neuros, have had two EMG's (the latest one was very thorough) and have been told with 99.9% certainty I don't have ALS. It's that 0.1% that wreaks havoc with my mind from time to time. I have yet to see improvement in my condition, but I have been told I need to be patient, a virtue I unfortunately do not have.
I have made many friends on here and I simply do not want to leave. I stood in their shoes for a very short time when I thought I had ALS and it was quite frightening. I had the fortune of being able to step out of those shoes, which is unfortunately a luxury they do not have. The people on here amaze me with their courage and their outlook on life. It's ashame not everyone in the world is more like them, because the world would certainly be a better place. They are here helping people . . . people they don't know . . . at a very difficult time in their life. That simply humbles me.
I guess I really haven't answered your question yet, have I. I want to learn as much as I possibly can about ALS because I want to give it a voice. I want to call attention to it and I want to be armed with as much knowledge as I do it. So I have learned from the many people on here and have done an immense amount of research and I will continue to do so. I want to make a difference and fortunately I am in a position to do so. I not only owe it to these amazing people but I almost feel obligated.

That was the end of my reply to her.

You also ask if I have a medical background: I have a Master's degree in Physiology and a Ph.D. in Biomedical Sciences. I was a neuroscientist for nearly 10 years and now I am a professor at a University teaching in the nursing and medical schools. Not exactly a medical background but darn close.

[CindyM]

I have a new doctor to add to my group. She is a pulmonary, and I saw her for the first time today. I ran down the list of things that are clinically wrong and she asked why they cannot give me a DX.

I said sometimes these things are hard to pin-point, and she looked surprised. She said, "We never have that issue in my field. But I have heard that in neurology there can be times when they do not know what could be wrong."

Moral of it all is this: sometimes they cannot say what is wrong with us.

[olly]

"hit The Nail On The Head"

[MtPockets]

Cindy, Right on the money.
I think so many are afraid of lawsuits, that they will not take a risk to tell us the truth. They know or at least have a 90% opinion about what it is, but will never admit it. If they cannot run a blood test or some other test that confirms it for sure, 100%, then guess what, welcome to limbo land, no dx.

I do not have to tell this to most of you that are waiting on a DX. I'm just venting, because it makes me so mad. They should not treat you that way. It is wrong.

It is enough to drive you crazy, like my cat here. :-D
http://i160.photobucket.com/albums/t172/ShakeyMarble/Animations/bunny-128.gif

[happy]

In my case Wright was right. I do not think it is a problem for Wright to state the facts. Most of the people on this forum are asking him for an answer. He can only go by what he is told. although, there may be something wrong, he goes by the symptoms and the statistics of als. I for one am grateful for his input during a time when I was having great stress and illness. Looking back on all of the things he mentioned, based on my posts, he was right. And thinking back, I am grateful for the opportunity to have different things to research that took my fears off of als. Wright, thank you for all the time and research you have done. And thank you so much for giving me hope when I was so down.

[ZenArcher]

I'm so happy to see that self reported symptoms without the need for examination and statistics have become a means of diagnosis. That means I won't have to pay the $15 copay for an office visit. If that is sufficient to tell some one they don't have ALS or more than likely have BFS then it should definitely be able to handle mild things such as pneumonia or flu.

No one can diagnose you across the internet. No self respecting medical professional will make any claims based on self reported symptoms only. Anyone on a forum telling you that you do or don't have ALS should mean absolutely nothing to you. Statistics are meaningless unless the data behind them is solid and guess what the data about ALS is worthless.

The requirements for diagnosing ALS are quite clear. If you meet them you have it, if you don't you don't. If you want to spend months worrying about it the choice is yours but the only people that can tell you anything of worth about your medical condition are those that have seen you and reviewed or conducted the tests. If you chose not to believe them then seek another doctor or psychiatric assistance.

[MtPockets]

Jeff, Thank you. You said it so much better than I could.

[CindyM]

MT- I don't think they avoiding telling us what is wrong for fear of lawsuits, although they run the risk if they are not careful. I think some things cannot be tested, like Alzheimer's and ALS.

They can do an autopsy to prove or disprove their suspicions but they will have to do that over my dead body, LOL. :-D

[crystalkk]

Cindy,

They know how to cover themselves, they say I don't think you have ALS or I think you might have ALS but get a second opinion. Like you said and autopsy is the only real way of proving it was exactly ALS.

[northerngirl]

Autopsy you say? I have a questions I flew from Canada to a spin institute in Hudson fl. they did a MRI that showed the atrophy in Mom's spine. They said they were not neuro disease specialists but..... they showed us 3 spots in her spin that there way truly spinal cord problems. It looked like a hour glass. Then follow up EMG's it was ALS.
I think most Dr. Know but but if it is only 99.5 % sure , do you really want to give the diagnosis? Mom had that "99.5% is is ALS", "Almost sure I think it is", to her face "It is not", but in the Dr. report it "probable is." She went to scripp's on California, Neuro said it was and the neuro surgen said it wasn't. 12 specialists later.....

Lorie, I think when people say on here they don't think you have "it" I don't think they are trying to diagnose someone. I think what they are trying to say is "OH my god I hope you don't have it and I hope it is something else" You are an angle, and your life must be incredible exhausting some days. I wish you happiness because you have earned it.

[olly]

in my research i have found most mnd patients have a normal mri. however those who do have abnormal mri's show the exact"hour glass" image. this is definatly an indicator of mnd,besides a emg .
as for autopsys, my neuro said the same. he will only know for sure when they look at my brain with a microscope, but by then it wont matter to me anymore.
take good care
caroline:)

[olly]

i must appologise,i tried to find the article but could not.
but basically a hourglass shape would indicate atrophy/neurone loss of the corticospinal tract and is seen on diffuse tensor imaging mri. it can sometimes be seen in other mnd's
i am not an expert it is only what i have read in articles.
take care
caroline:)

[MtPockets]

I went to an ALS clinic in Louisiana, and was told by the ALS Neurologist, Dr. DeAlvare, that he had a patient, just a few months before I came, that he ran all the tests on and told him he did not have ALS. Negative EMG, negative NCV, etc.

His patient then went to John Hopkins and got the same Dx. Three months later he died and the autopsy showed he definitely had ALS. The Doctor was confounded and said sometimes, you just can't DX ALS. The textbooks sometimes do not have the answer.

I know many here hate to hear of things like this, but it is a fact of life. Only God knows sometimes what is going on with our bodies. Man does his best to guess at it, but ALS is so elusive, almost like a criminal hiding in the bushes.:twisted:

[olly]

thanks for the story, i don't think anyone will trust a neuro again after hearing that................only kidding lol:-D
take care
caroline:-D