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lynster

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Hi,

My husband is at the stage with lots of testing going on - we know that he has MND, but do not yet know which one. He is able to get around, even though he gets tired quickly. This all started with fatigue & daytime sleepiness, followed by a sleep study and being fitted for a CPAP - which caused him to stop breathing because he was so oxygen deprived! A trip to the hospital, transferred to a large hospital and home, he was put on a BIPAP, which has helped his breathing immensely. However, after a first diagnosed of Myasthenia Gravis, it was found that he did not have it. He does not have the antibodies, nor does the medication for MG work, so...

My point here is that I had not intended to post until I had questions, but I find that I cannot read all the posts and see the pictures. I really need this support system, even though I do not yet have much to say.

What can I say? I am in shock, I am distressed and I come here for information and support. How can I get privileges to view all posts?

Thanks for listening.
 

brooksea

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Hey Lynster!

Sorry you've had to seek us out!

You should be able to view posts. You just can't private message(PM) until you've been a member and "conversed" for a while.

Cindy or AL can answer your question about privileges. (moderators)

I wish you and your husband luck and hope that he does not have ALS!
 

Al

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Hi Lynster. I've sent you a private message.
AL.
 

CindyM

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Hi Lynster. Glad you decided to join us. You have already made a few friends here, in case you are not aware - jimmercat PM'd me on your behalf and I see Al has emailed you. but if you still have questions post them here and I will try to help too.

Quite a few of us here know what it means to be in limbo-land. Stick with it and we can help each other out! Cindy
 

lynster

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Thank you to all that contacted me. Yes! I am glad that I found you all. I still do not know what to ask, but I will continue to browse, and will ask the questions when I know what they are! It is fortunate to have you available to all of us. I don't like having to be here, but what else can I say? I will keep you informed as we travel this path that we did not know existed...
 

freddiesnetty

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You will soon call this 'home" Welcome aboard! These folks are all very helpful. I couldn't get through soooo many things without these friendly folks here! So ask away, no question is dumb....I know because I am sure I have asked some dumb ones and they haven't booted me off yet!
netty:mrgreen:
 

fiddleplayer51

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lynster,
Sorry you had to seek us out, but you've definitely come to the right place. We help each other out throughout the day. Anything at all that you need to ask or share is most welcomed and encouraged. Most of us could not navigate this path without this forum.
All the best to you and your husband as the diagnosis becomes clearer.
Jane
 

lynster

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Still waiting

Hi All,

So, guess what? I now have a question!

I am still waiting for test results for my husband. What a pain in the you-know-what! Besides dealing with deltas that have no clue and/or a care about what you are going through, trying to get all the info to one place is so frustrating!

Mike (my husband) is not working right now, and seems to forget that he was going to do a task during the day while I am working. Is that unusual? He says that he will do it, then when I get home, he says: "Oh, I forgot!" Is that a crock, or is that really a part of any MND?

He was always a bit absent-minded and could get lost in a book very easily, but it seems more than that.

Thanks for your help.
 

CindyM

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I forget things when I am over-tired, low on oxygen, or in pain from doing too much. Could be a number of reasons, I suppose!
 

sisgldnhr

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forgetful? or not getting the message

Mike (my husband) is not working right now, and seems to forget that he was going to do a task during the day while I am working. Is that unusual? He says that he will do it, then when I get home, he says: "Oh, I forgot!" Is that a crock, or is that really a part of any MND?

Lynster,

We went to the ALS Clinic in March and that was one of our questions to the MD. My husband will be sitting at the kitchen table and in his mind he plans on getting up to do the dishes. However, 2 hours later he is still sitting there looking at the dishes. Dr. Nash says that it is part of the disease. My husbands muscles/nerves are not responding to his brain/thought pattern. He finds it to be very, very frustrating.

Sis
 

mayNsky

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CALS
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4/2008
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we were told my wife has ALS in april of 2008...just last week the dr told us 5% of ALS patients get ALS dementia....guess what we fall in to that 5%...my wife has had trouble organizing things around the house we have two kids 6 and 9 and she was anal to a fault about their appreance ... well i thought it was just the idea that she has been told she has this terrible illness...but she was allowing the kids to wear the same clothes day after day... and my daughters hair was not getting brushed like it should of ...
so their is a form of dementia with ALS...
 

CindyM

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He Maynsky- welcome to the forum. I am really sorry to hear about your wife. You have a big journey ahead of you, considering that your family is so young. Please keep in touch with us! Almost all topics are welcome and folks around here are great about offering support. Cordially, Cindy
 

lynster

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Test results

Boy, am I glad I was never in the army. All this hurry up and wait is driving me crazier than I already am. To catch up on my husband, all his blood work came back negative (you know, no Lyme disease, etc.), the CT and MRI are unremarkable, and now our neuro wants to do a DNA test for Kennedy's disease. Mike does not know alot about the maternal side of his family, so this is a distinct possibility. His clinical findings fit within that diagnosis, so now we wait some more. I can only hope and pray for it to be so, since it is one of the least aggressive of the MNDs.

I really appreciate being able to browse the posts, and learn what I can about this junky bunch of diseases. Thank you all for being there. My turn to rant may come, but not today!

Thanks!
 

lynster

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Sounds great, but...

Hi All,
I just re-read my latest post and realized that I sounded really optimistic. I have to tell you that I am not. I am on antidepressants, and am having a hard time making it through each day. I love my husband so much, and sometimes I just want to crawl in a corner and cry. However, I see all of your posts and know that I can make it through this, too.

Thanks for all your support.
Call me Lynn.
 

fiddleplayer51

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Lynn,
I just want you to know that I'm thinking of you as you suffer through this waiting period. I think not having a diagnosis is harder than having a diagnosis even when the diagnosis is bleak.
Even though my PALS husband has bulbar-onset ALS and is progressing rapidly, I believe I can handle this knowledge better than if we were still awaiting a final diagnosis.
I'm so sorry for this seemingly interminable wait and for the pain and difficulty of your day-to-day existence right now.
I know what you mean by just wanting to crawl into a corner and cry. Lately, I've been much more tearful than just a week or so ago. It is so painfully sad to see the love of your life becoming visibly weaker and thinner, to have such difficulty trying to interpret what they are saying, to see them struggling to eat.
I'll keep you and your husband in my thoughts throughout the coming days as you await further word and I hope with all my heart that the final diagnosis can offer you some encouragement (i.e., turns out to be one of the less aggressive MNDs).
Incidentally, you have a great sense of humor. That alone will carry you far through all of this. Hang on to it whatever you do. :-|
Best wishes and try to enjoy the 4th of July holiday.
Jane
 
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