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KCAL

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It's true, I don't, I don't want to believe any of what is happening and if I could get 7000 2nd opinions, I would and probably will try to. My husband is 32 and was given a "in my heart, I feel you have MND" diagnosis by a neurologist that we have to travel 1200kms around to see as we live in a rural/remote area in Queensland, this is after being pushed from pillar to post and fighting to see people over a six month period, watching my husband being stuck with needles and hooked up to what seemed to be a power supply for an electric fence and MRI and finally walking out of the hospital with a script for Rilutek and no information on MND, no support links, or the possabilities of what it could be other than MND. Our local Doc has no idea of MND, he thought I was something old people get, which would explain what he was so blarzay about it and is of the opinion that what the neurologist says goes as they are the experts (we're changing doctors).

We have a 16 mth old little boy and a baby due in Feb, I also have 2 teenage children, and 400,000,000 questions I want answered today and every other disease that displays the same symtoms tested and retested for. I't's only been two weeks and I'm already driving our Doc up the wall, however for as long as my butt points to the ground I won't lose hope...... but I need help and suggestions, I'm a quick learner and have already mastered the art of crying in the shower, you just blame the shampoo for red eyes. My head hurts, my guts are twisted, I get mad, sad, panic, I want to hold my husband until his eyes pop out and breath in every last smell of him and not miss a second but deep down I feel something is amiss or something has been missed.......

I guess you guys could probably get really sick of me too, I'm like a pig dog, when I get my teeth into something I won't let go until I choose to, good sometimes, not so good at other times.....
 

CindyM

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We won't get sick of you, KCAL. I promise. You have Wayyy too much on your plate right now for us to lose patience with you! Welcome to the fourm, but sorry for the reason you sought us out. GLad you decided to join us, though. We will help in any way we can. Cindy
 

KCAL

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Thank you Cindy for your welcome. Today is a crappy day, things have just hit home for my husband, and being a strong independant man of the land it's devestating to watch the big man who has helped me up so many times and been a tower of strength, cry in a way I have only seen before when our baby had to be resussitated and I can't do a bloody thing! Except tell him I will not stop harrassing, tormenting or becoming a boil on every doctors butt in Australia and when they run out, I'll start overseas! He did say to me today that he appreciates every thing I am doing (which I don't belive is any more than any other wife would do) and if he gets angry at me for being so persistant to ignore him and continue to be a stick fast flea on the medical world.

I am still not convinced the Doc has it right, I know everyone probably says that, however an MRI showed 3 vertibre in his neck that have degenerated to the point of placing pressure on the spinal chord, this issue has never been addressed as a possability for his drop foot or weakness in his hand, even though the first neurologist was adimant that was the cause and there was no neurological disorder and suggested that surgery be performed, he then sent the report to the referring neurologist and the surgeon and that was the end of it. As I have said we have been pushed from pillar to post and I am not convinced. We have found a Doc who is willing to take us on and start retesting and reassessing and this time I will demand that every test in it's entirety be explained and discussed - WITH US!

All I ask God for is that this be something that can be fixed, well that's not true, a healing miracle would be wonderful, for my husbands sake and our childrens sake.....
 

CindyM

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There will probably be a lot of ups and downs over the next few weeks. We will try to help in any way we can. Hope things level out emotionally, soon. Cindy
 

janf

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Hi KCALS. Frist let me say God Bless You and Your Family . Lean on him he is your father he will give you PEACE. I am an ALS pt have similiar neck problems but the neck does not cause foot drop because thats l- spine and the neck is c-spine. My ortho explained to me. The neck problems could cause hand weakness. I am so very sorry you are going through this my e-mail is [email protected] if you need me. I will help in any way i can . JAN FRANKS
 

kelly

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Hello

Kcal,
I can relate to everything that you said in your message. I also have young children..so I know how scary this is. I also cry...several times a day. Know that you are not alone..if you ever need to chat..feel free to email me. Just take things day by day..sometimes hour by hour. Do you have a good support system? Take care...we are in this together.
 

KCAL

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Kelly, Jan, Cindy - Thank you. I find it truely amazing that the "experts" cannot inform you about things, it takes others who have or have experienced the same thing to help you out, not really what I wanted to hear, but again thank you. Not too bad today, but then again it is only 4am here (the joys of an early work shift!).

As for leaning on God, He has a permanent indentation on His shoulder from me! Good thing He doesn't have email or His inbox would be chocka block - just from me.

All the best for today for all of you and I lift each and every one of you up in my prayers.... :)
 

janf

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You too K-CAL hope we can help one day at a time moment by moment. CALL WHEN YOU NEED US JANF
 

MtPockets

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Hugs For The Hurting

OK, I know I'm weird! But today I just had to give out some hugs to some people who really needed them. (tears and all)
God Bless
Capt AL
 
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liz

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Right back at ya' Capt. Al. You have the knack for brightening my day. :-D
 

KCAL

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Thanks AL, isn't it funny there are times when people go to give you a hug and it's like "DON"T TOUCH ME, I DON"T WANT YOUR SYMPATHY!" and other times, from the right people, it's perfect, I guess the meaning behind the hug is the important thing and that it's not all for show with a "there, there" patronising attitude.....

Well, a week after we started this journey (all 3 weeks ago!) I made a pact to myself and that was I had to have at least one "win" per week.... what ever I classed a win to be at the time (even if it was only crying 2 times in the day! lol) I thought I would share with you my "wins" so far, they may be insignificant and grasping, even maybe denial to some but each one means alot to me....

Firstly i was appalled that our neurologist had flamboyantly sent my husband on his way with little or no information on her heart felt MND diagnosed and an "i'll see you in about 3 mths", it was then I contacted the MND Qld Assoc, who were more than helpful and contacted the neurologist bringing our next appointment forward by as much as we wanted - Win #1

Next, not happy with the fact that our Doc had no idea what MND was, I embarked on finding a Doc that had knowledge and was will to take us on, win #2 I found one, win #3 was that this doctor is intent on testing and retesting my husband.

With men off the land, when something can't be fixed you shoot it or just let it die. An attitude that I was terrified my husband would take and seemed that way with his expressions of frustration in my obsessive compulsive behaviour with doctors, phone calls and wanting to know how, why and what if's, especially after everything hit home. However after finding some information I had researched and printed out on MND and other diseases with the same symptoms, I found him reading it and softly said " can you now understand my obsession?" win #4, his understanding were I was coming from, we sat and talked about it all, win #5 (he hadn't mentioned the diagnosed indepth up until then), win #6 came in the form of him asking me to help him understand what the doctors were saying and to be with him the whole time (as if I'd leave him by himself!).

Win #7 - I saw my husband smile and laugh for the first time in 3 weeks over the weekend and a positive approach being taken - this one I thank God for from the bottom of my heart.........

Seven "wins" in 3 weeks, pretty good I think. My personal "win" goal - To stay positive, no matter how much corrigation is on the road ahead..... and among the 50 billion other things I ask the Lord, I ask that that one be my strength.......

Have a great day all, and may you have a "win" today, no matter what it is or how seemingly insignificant it is to others and don't forget to thank God for it......:-D
 

CindyM

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thanks for sharing htis, KCAL. My personal philsophy is that it takes less energy to be grateful and psoitive than it does to be all tied up in knots. Here's hoping the "wins" keep coming at you! Cindy
 

KCAL

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I hope I'm not overstepping my mark posting so often, it's great to be able to talk without having to be face to face with someone. I guess I'm avoiding other peoples emotions until I can deal with my own first up.....

I learnt a valuable lesson last night, that being if you know very little about something, you shut your gob as the implications of uninformed, uneducated comments can have an irriversable impact on a person. Last night we were farewelling our neighbour at dinner, and my husband opened up to him about what was going on at the moment, I silently breathed a sigh of relief as I thought this would be a step forward for him, not to be so..... This bloke who is one of those ppl who know a little about a lot, turned around and replied, mate there's no way you want that (MND) you know how bad that is... (here it comes....) I know a bloke who had that and he was just a blob of jelly in a wheel chair, the only thing keeping him up was his spine.....

Do you have any idea how much restraint it took me from decking the guy right there and then! This is he point my world fell around me, my husband who had just gained a positive outlook, turned around to say, "as long as I can hold a gun, I won't end up like that...." Pls somebody tell me how I can rebuild my husbands positive outlook.

To be honest with you, I don'[t believe a word this guy says, you know the type, always knows someone who knows someone who has something...... I think if we'd said MS, MD, CIDP or anything else he would have said the same...... now the seed has been replanted.

I did say to my husband that this guy has no idea and that I was cross (not the word I wanted to use) that he made a stupid uninformed remark like that.... but I don't think it made a difference..... makes you want to go on a quest to educate the world.... even if it is only in sesitivity....

Have a great day everyone, I have a stumbling block to remove... God Bless......
 

CindyM

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Maybe hubby is just momentarily depressed by that idiot. He sounds like too smart a guy to let some doomsayer color his thinking for very long.
 

Icanmanz

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KCAL, Thank God I have never run into anyone that has said something degrading like that! Bless your heart, and your husband's. People can be so rude and stupid. With friends or neigbors like that who needs enemies. If I were you I would take a looooong time out. I'd go to any Walgreen's or CVS and find me a blank greeting card with a nice spiritual pic on it. I would sit down, and think hard, hard and looooong on what to write on that card. Don't get me wrong, I wouldn't write something ugly on it. I would pour my heart out, I would use nice language. I would tell him that if he had a heart, or if he knew better he would not have made that harsh remark, and hurt your husband's feelings to where suicide crossed his mind. I have read many a post, and this si the worst incident. Get you a card sweetie, pour your heart out, bring him to his knees. God bless you and your husband!

Irma
 
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