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sabdmb

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My Dad has been having problems with his leg muscles for about 4 years now. He has run the gammot of tests and everything has come back normal. Now the doctors are telling him that they feel like it might be PLS. How long can it take to get a confirmed diagnosis? It seems so rare that it is difficult not to be skeptical of the diagnosis. He is very depressed already from all of the years with no answers. It doesn't seem like he will be getting any anytime soon. I would appreciate if anyone out there can possibly explain a little futher.
 

CindyM

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Hello. I am sorry for what is happening to your family but glad you found this site. People here are very helpful and supportive. Unfortunately, there are no tests for MND, so often the DX takes guite a long time. A lot of folks find that it helps to visit here during the waiting time, both to earn what to expect and to find ways to cope with the uncertainity. Cindy
 

Stephanie

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Hey Shannon...it's your sister...guess we're doing the same research. I love you!
 

CindyM

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LOL- It is great when the family decides to join us! Are there any more of you guys out there? :-D Cindy
 

brooksea

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I have burst out crying! Such love and support from two sisters! And to find each other in cyber space!

Y'all may have already read this but here it is just in case might help:

http://www.alscenter.org/about_pls/

Sorry girls about your daddy! Hope y'all can help him in some way!
 

Stephanie

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Well I've told my mom about this forum...and she's said she joined...but haven't noticed any posts from her yet. Might have to go over to the house and make sure she's doing this correctly...she's not AS computer savvy...but she's being a trooper right now. Shannon...maybe we can see about the second opinion at Duke...maybe when we're up there soon when for when that precious baby boy is born! Sounds promising that it's one of the top 10 for ALS research! We should mention this to mom. Talked to mom last night...asked her how she's holding up. She's having a hard time...b/c his attitude is so poor. The nurse called to schedule the first memory tests....which as I understand, this will be done regularly to compare notes and really narrow down the diagnosis. Well our mom asked my dad if he had called the nurse back to schedule the test...and he said "no...they've already given me my diagnosis." We've really got to get him in the "i wanna fight this mode" and he's not close at all. He told my mom the day that he got the diagnosis, that he prays to God everyday that he won't wake up the next morning. I want to start pushing him...tell him all that he has to live for, I want to get him on anti-depressents in hopes that will help steer his attitude in the direction it needs to go. But we don't want to push too soon. Me and my mom decided we'd give him about 2 weeks to soak it all up and let him feel sorry for himself...before we start really telling him how we feel in regards to his poor attitude. He's always cared so much about his baby girls, and would do anything in the world for us...and just has always wanted us to be happy....but what he doesn't seem to understand is that nothing breaks our hearts more than to see him give up like this. Has anyone had to deal w/ this "i give up" attitude that may have suggestions. I read today from the yahoo PLS Friends group that a book called "Augie's Quest" comes out today. It's an autobiography about a guy who was very active, then diagnosed w/ ALS...and goes through his emotional devistation and suicidal thoughts...and how he pulled through...and I'm thinking this would be good for him to read...if he's even willing.

Oh....just trying to stay strong but my heart is breaking right now seeing how he's taking this. Any suggestions or ideas would be greatly appreciated.:cry:
 

CindyM

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OK so wait--which one of you is expecting a baby boy?

Now for Dad's stuff- Mom has the right idea. Give him time to let it sink in. Augie's story is uplifting, so that's a good book to read. Also, a book that helped me was "letting go" by Morie (Of Tuesday's with Morrie fame.) He talks a lot about working with the body you have and enjoying life as it presents itself.

Keep up the good work, ladies. can't wait to "meet" Mom. Cindy
 

Geo

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Healing ones self has to begin within . I personally feel i am a fighter ,at first i was in the Dumps ,but decided ,do i want to live or die .Theres two ways to go about the task you have ,one is to confront him with ,"you know what your attitude is doing to your wife " Hoping this wakes him up because the other is not going to be a pretty site . If he really wants to survive he'll take the Bull by the horns and do whatever it takes to fight .If he doesnt all the Kings Horses cant help .Some times you have to build a Fire under some people to get them off dead center . Teach him to be Browser Literate and GOOGLE SMART .You just type your question in google and it will give you sites to visit based on your search . Geo
 

sabdmb

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How refreshing....

Wow. It so great to have the outpouring of support and from complete strangers at that. I really hope that my Dad will come around and eventually join a forum such as this one. I believe it would really lift his spirits. Of course, I'm hoping that a more immediate distraction will be the birth of his grandson next month. Steph already touched on it earlier. I'm the mommy to be (for the second time in 2 years). I have a beautiful baby girl who always keeps a smile on his face. I wish we could live closer. Steph and I both appreciate everyone's input on getting him through the depression part of this diagnosis. I think we have to conquer that before we can worry about anything else.

There seems to be so many unanswered questions surrounding this diagnosis. It sounds like it is rare to even confirm it or similar diseases. All we can really do at this point is read and do research. I'm so torn right now because I want my Dad to know that I completely sympathize that he has been confronted with this, but at the same time I want him to know that I'm angry and disappointed that the man that has been a rock in our family's life is willing to throw in the towel already. He has only been a grandfather for a year now and I don't understand how he can attach his entire livelihood to his ability or inability to walk.
 

brooksea

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My husband went through this phase. It may take more than 2 weeks to come out of. Your Dad is angry and in shock. I'm sure his mind is reeling with all the hopes and dreams he had basically being dashed upon the rocks. Not trying to be a downer, just trying to show what may be going through his mind. He needs some space, but at the same time your mom will have to take over and make sure he does what the docs want, since it looks like he has momentarily given up. This is what I did with my husband. I just took over.

He probably feels guilty and terrible that this has been visited upon his family at such a time when all should be happy about the arrival of a new little one. Don't be too hard on him...when he sees that his world has not really caved in, and love is more important than any diagnosed, he will come out of it.

Good luck!
 

Stephanie

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Yeah I hope I didn't sound to harsh when saying we're giving him two weeks before we start talking to him about his attitude. I can only imagine what all is going through his head....and that makes this so hard. Don't know the right things to say or do. My mom has kind of taken over as you mentioned. I'm going by there tonight...he has his spinal fluid test today to rule out MS, etc...which I'd imagine is quite painful....so I'm going to bring him an ice cream treat or something like that. And I told my mom that ya'll want to "meet"' her....so I'm going to get her onto this Thread so she can talk to ya'll as well. I think it would especially be great for you to talk to her since you've been in her shoes. Thank ya'll so much for all of your kind words and support...it's so nice having you guys to talk to. :(
 

Geo

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Steph the spinal tap is not a cake walk ive had 2 .My first one they had me lay on my side and acrh my back so the needle could go in between the vertabra , the second one was a feasco .My doc sent me to the Hosp to get it done .I laid on a Metal table face down in a cold A-- room for an hour waiting for the idiot to get to the hosp. ,then he refused because of not enough info so i waited 2 1/2 hours more on that metal table until my doc. sent the right info .He used a Xray machine so he could see where the needle was going in so he wouldnt hit a Nerve root . He hit the Nerve root ,which sent a shock into my groin like 220 volts ,then had the nerve to ask me" hows it going " Incompetent and uncaring Medical personel have a HUGE impact
on sick people .People mishandling spesimans,doing the wrong tests treating patients like cattle . The key word is CAUTION someone has to be an advocate for the patient and make sure they get treated in an appropriate manner .They always give a soda afterwards ,it replenishes the Glyconutrients and helps get rid of the headache you'll get after from them removing the CSF cervical Spinal Fluid . Geo
 

Stephanie

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Geo...that sounds horrible. My dad actually had somewhat of the same problem when he went to have his on Tuesday. He said the guy was under thirty...and poked him 3-4 times and still didn't get the test done. He said something about the scar tissue from his back surgeries being in the way. So he's suppose to go to the hospital on Tuesday to have it done. Lord I hope it's more smooth than yours went, and I don't mean that in any way rude...so I hope it doesn't come off that way. That just sounds horrible what you had to go through...and I hate you had to have that happen to you!
 

CindyM

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When they asked if I would be willing to get a spinal tap I asked who would perform it and how much experience the doc had with that particular test. He said he would do it himself and had done over 100. He said in his experience the only folks who had headaches afterwards did not lie flat for an hour after the test was over.

I think you make out better in a large teaching hospital but that's just my guess. I will say I did not have any trouble afterwards but I followed his directions carefully and even took it easy the next day, just in case. I hardly knew the test was being done. Let's hope your Dad is lucky, too! Cindy
 

Al

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My first time the guy was a resident or whatever. He tried 5 times and couldn't get it. Finally my wife said enough but not before he nicked the cord but didn't know it. I sure did the next day. Headache so bad for 4 days I couldn't believe it. Finally called Neuro and they said come to emerg. 2 hour drive so I waited till next day and it was gone. 3 weeks later had it done by real doc under x-ray. Piece of cake. Laid still for 1 1/2 hours and felt great afterwards.
AL.
 
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