My Journey

[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 MRI

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]

My MRI

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]

Lorie & Wright

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]

cindym

"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 diagnosed.

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

 

[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]

No more office visit fees

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