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Twinsmom

Senior member
Joined
Sep 2, 2009
Messages
606
Diagnosis
07/2009
Country
US
State
FL
City
Miami
I know we're supposed to see the positive, but some days, it's just so hard...

I feel like we're living a good news/bad news bad joke-

bad news

My husband's condition continues to deteriorate. Up until now, what was being "experienced" as weakness and decline in function, wasn't really observed in the neuro testing done with the doctor...until this last appt. 2nd EMG showed more "damage" than the 1st (20% -but, we'll see the positive in that...it could just be difference in machine :roll: ) They now "see" the weakness in his legs and arms and notice an abnormal gait when he did the neuro testing at the office. Bucky complains that his legs feel "rubbery". Not falling or stumbling, but just can't keep up with others and looks stiff when he's walking.

He can't hold his camera bag anymore, or even keep his camera held for any more than a few minutes before having to put it down to rest. And for him, this is huge, as his photography is his love (next to me of course! :roll: :(

But... Good news (I think)
Still holding out on an ALS diagnosis, because he's not progressing with his decline at the rate "normally" seen by our neurologists. Bad News...His last EMG showed more deterioration than the 1st one, but again...not awful. They can't decide whether it's just that they started this journey earlier than is typical (thanks so much pulmonologist who pushed us to the neurologist! :confused: )

Even though every test under the sun has been done, and come back negative, (good news!) we are going to re-test for chemical toxins and a couple of "out of the box" autoimmune diseases. AND, since we don't have a diagnosis, let's get in touch with the VA docs up in DC who are doing studies on the soldiers who've served in Iraq and see if they have any insight- Any PALS or CALS have a contact for this? We would like to find the right specialist asap and try to get in for a consult.

I'm not sure what I'm more stressed about...the not having a diagnosis (if it's NOT ALS, but something else, then let's figure it out so we can treat it for G_d's sake!) or...watching my husband become sadder each day he tries to do something and sees that he is not able...I'm trying hard to hang on to the fact that he is still VERY FUNCTIONAL...but my heart breaks each time I see him struggle to get out of the chair. To see him losing his balance at the doctor's office was surreal!

Dear Lord, how do you all survive this? I haven't been posting much lately, because all you PALS and CALS are so brave and courageous...I feel like such a fraud!

If I am struggling to make it through this part...and he's strong still, how in the name of all that is holy, am I going to be able to be strong for him if/when he declines?

Trusting in my Lord right now is out of discipline, not cuz I "feel it"...:(
 
Melody -
Welcome to all our true inner feelings! Your husband's progress sounds a lot like my husband's. Real fast, all tests negative (except cognitive - but that is the FTD), stiff walking (Drs describe it as Parkinson's like - but the spinal tap showed not parkinson's).

I know what you mean about the being fuctional - yet sad. Compared to many in both the ALS and FTD catergories Jim is still pretty high functioning - but everyday you see a little more decline - and the big changes that sneak up to you.

To outsiders I think he can come across as normal or just a little "odd" depending on the type of day he is having - even to friends and family who haven't seen him in awhile. Those who see him reguarly are shocked at the changes.

Greastest strength you need to develop? Reaching out and asking for help. Unlike many "outsiders" everyone on this forum will "get it.":cool:
 
Hi Melody, I am glad you decited to come back to the forum... It does help to talk to other cals and pals.. Don't feel so alone.... We are all here to listen and to help if we can. Sometimes I think it is just to say all the things that are bottled up inside and can't or won't talk to with friends or family members? Anyway thats what it is like for me.... I hope you get all your answers soon. You are in my thoughts and prayers. Hugs, Linda
 
Hi Melody - That is sure a strange turn of events. I don't understand what your doctors are looking for, it does sound like your husband's condition is similar to many of us when we were diagnosed.

I know my wife feels some of the same things you describe, when she sees me having trouble. We know that we both have to be strong for each other. Otherwise I feel bad for making her feel bad, and she feels bad for me, and it gets to be a mess.

It must be very hard to be dealing with progression and all the kinds of challenges that ALS presents, without any clarity as to what lies ahead. At least in our case we pretty much know what to expect in general. Without a diagnosis I'm sure you must have a hope that your husband will wake up one day and be feeling better. Every day that doesn't happen would be a fresh disappointment. We don't have that particular issue.

But still there is as you say a bright side, that there must be some reason the doctors don't want to make the diagnosis. Whatever it is, it does offer a genuine hope that your husband really could get better. I do hope that you will get some good news in the further testing and you will find your way to a better road.
 
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My dearest Melody, I hope and pray for you and Bucky that this is something treatable... but I know it must be so hard not knowing. As far as you feeling like you aren't strong enough, let me tell you that you will be strong enough to handle whatever obstacles come into your path ahead.

You actually don't have all the strength you need right now but you will and as difficult as it is, it is best not to think too far ahead. Just always face what is directly ahead and you will be great. Melody, you have already shown how amazingly strong you are so there is no reason to doubt that the resources you need down the road will be made available to you as you need them. It is a supply and demand sort of deal... it was for me anyway. A year ago, I never would have believed myself to be strong enough to see my dad in a wheelchair, let alone lift him from the chair into his bed but I did that because you know that old cliche, "Love can move mountains?" Well it's true!

I'm sure you have heard of the story of a young mother who lifted a car because her child was trapped underneath. On any other day, that same woman could not lift a car. It's supply and demand... don't worry you will be strong enough to handle whatever comes your way. I have no doubt about you!

Keeping you and Bucky in my thoughts...

Hugs,
Rosella
 
Melody, I hear your anguish. It was like that for me for about 4 months after the doctors told me I had ALS. BUT then they said oh, maybe it's hyperparathyroidism. Seems it can "mimic" ALS. That started a storm of phone calls from friends and family who drove me crazy with their theories as to why I didn't have ALS. And I went from doctor to ultrasound to blood test until finally an endocrinologist told me and my sister that there was nothing wrong with me except I had ALS. No harm, no foul, but I could have killed the neurologist who suggested it might be something else. During that time I lost a ton of hair, had eczema so badly I had to drive 30 miles to see a dermatologist, and I was mad at my pets everyday. Once the diagnosed was certain, the phone calls stopped (too depressing, Iguess), the eczema stopped and my hair loss is in the past.
You are right to follow every lead to prove your husband does not have ALS. All I'm saying is that when I finally accepted it, a huge load of stress was gone. My pets are happier too!
Good luck,
Carol
 
Thank you all, for your encouragement and support. Being reminded that YOU are all "getting through it" and sharing your "confidence in me" really does help!
Peace and prayers,
Melody
 
Melody,
How I identify with your sentiments about trusting in the Lord out of discipline . . . I was so down on myself after my husband was diagnosed because I always thought I had such a strong faith, and yet I was so angry at God I couldn't see straight. I kept trying to visualize the Footprints in the Sand, but couldn't even muster that. One of my friends gave me the book entitled The Twenty-Third Psalm for Caregivers by Carmen Leal, and that book spoke to me. Hopefully the diagnosis will be favorable, but know that you do have the strength to face anything - you just don't know the extent of your strength yet. Prayers and best wishes.
 
Melody, holding you safe in my heart. love. Kay Marie
 
Melody,

My heart goes out to you and your husband. I am experiencing the same thing as your husband - progressing ALS symptoms for years that are either ignored or written up as being a negative exam by all neurologists seen so far. Only one neuro - my sleep apnea neuro - seems to display interest, honesty, and caring about my situation. The last ALS "expert" I saw was telling me I had "excellent balance" even though I could not heel-to-toe-walk normally for him. I was told I could "hold onto the examiners arm" if I needed to during the heel-to-toe walk. Totally bizarre.

Anyway, what we undiagnosed PALS are going through is comparable to a person presenting to a cardiologist's office with palpitations, chest pain, shortness of breath, orthpnea, etc. being told (without any testing) that he/she certainly did not have heart disease or any signs of it.

I would currently rate American neurologists as being below used car salesmen in credibility. I feel like I am in the Twilight Zone when dealing with them. What they put us through with their posturing and pretense is a living Hell far worse than what we would experience if we were given the horrible diagnosis of ALS!

Why is it so hard for them to diagnose ALS? Years ago ALS diagnoses came much quicker than they do now. Years ago our US government watched as many diagnosed ALS patients died before they could reach the end of the 2-year waiting period required in order to receive disability. Then a reporter brought this to light, shaming the govt. into changing its position to deliver disability to a PALS "as soon as that person is diagnosed". Got the picture? If you don't think the US govt can and does influence medical care in this country, then you are living with your head in the sand. It's all about money.

Weakandfalling
 
Melody,
What they put us through with their posturing and pretense is a living Hell far worse than what we would experience if we were given the horrible diagnosis of ALS!


Weakandfalling

really?:confused:, worse than a diagnosis of als

good golly weakandfalling, if you end up with als after all, you should thank your lucky stars for such slow progression...boy i wish my progression was slow enough to confuse those neurologists.
 
Melody,

I forgot to add that there seems to be a trend to withhold ALS diagnosis in older, disability-eligible patients until they are at death's door. I am aware of far too many people who had significant ALS symptoms for years and were finally diagnosed with ALS about three months before they died. Hey, look at the money that saves our government - it didn't have to pay any disability at all to those poor PALS thanks to the help of participating neurologists! Just a $200+ death benefit. What a deal! What a way to help balance the budget!

Weakandfalling
 
they don't pay money to stay at home mom's either...maybe that's why my diagnosis was so quick.......really? you've got to be kidding me!
 
Paleshia,

Dear Jen,

I am in no way diminishing the terribleness of an ALS diagnosis when I say that being kept in limbo (when we actually in fact DO have ALS) is worse than being given an ALS diagnosis outright. Let me explain.

For me, it is better to know for sure, than to not know. I agree with the statement "the truth sets you free". Knowing is critical because it allows us to quit wasting money on testing and to start planning for the present and future. And if we do indeed have ALS and they are just covering it up (far different from their just being confused about the diagnosis, mind you) it is a horrible mental torture for us - because we, the patients essentially know, or strongly suspect we have ALS - but without an official diagnosis we are not entitled to services and support groups to help us deal with this horrible illness. We live with our worsening ALS symptoms set apart from other PALS in our communities because we don't have that "official diagnosis." We use canes and walkers, we fall, but we have no answer to give when people ask what is wrong with us. Like you, we have ALS and are suffering, but we are not "legit" and are not included in the hands-on ALS support network in our communities because we have no diagnosis. How would you like to be suffering ALS isolated, without the support of PALS in your community?

As for slow progression being better than rapid progression, that is not necessarily true. It depends on the person. I kind of feel like a fly having my wings slowly pulled off. And I can't even get recognition from the neurologists that this is happening! Sometimes faster progression could be better if it eliminates prolongation of suffering. Is a fly taken out fast by a fly swatter worse off?

Whether fast or slow progression, ALS is always bad news and every single person suffering from ALS should be given a diagnosis as soon as possible. However, this is not happening very often in our country today and I think it is deplorable. As stated earlier, three months before death is a common time to receive an ALS diagnosis. Believe me, the duplicity I have experienced in my attempts at a diagnosis has saddened and discouraged me. This needs to be brought out in the open so that things can change for future PALS.

I'd be willing to sign away my right to government disability payments in exchange for a diagnosis if that's what they want. Just make it official and end this horrible isolation and suffering once and for all! At this point, for me an ALS diagnosis would be a relief not because I want ALS, but because I know I have it and it is going unrecognized. Anyone in this position knows the sheer Hell it is!

I truly hope your progression slows down or better yet, that your ALS spontaneously disappears! It is a horrible diagnosis indeed, but anyone who has it, should have the right to know.

Weakandfalling

Weakandfalling
 
Melody, You are not a fraud! Sometimes I feel like a fraud for keeping the brave and cheerful face on when I really want to scream, or cry. It was a full year after my diagnosis before I really felt I had reached "acceptance" and even then there are still days that absolutely suck. I can't imagine the frustration of not having a diagnosis; in a way I felt the months of uncertainty before my diagnosis were the most stressful. I am praying for you.

You are a fierce and loving advocate for your husband. I know it is hard to be strong. I see how stressed my husband is and yet his loyalty raises me up. Know that just by hanging tough and being there you are doing more for your husband than any doctor ever could. Hang in there Melody. God is with you.
 
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