Where can I go?

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lhagsjr

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Im really not doing well. I see my body wasting away. Im 28 years old and Im scared. My 2 biggest supporters in my life are my wife and mother. They dont want to here it anymore because the drs say no neuromuscular problem, but the problem is i feel so sick and continue to get worse. Where I can turn for support other then here? Work is almost impossible at this point, I have no idea how I get through the day...
 
ALS Clinics

can u just get an appointment? Do u need a referral? I definitely wont be able to get one because this ALS docs says there is nothing wrong with me neuromuscularly. Do u need insurance? again, I dont think my insurance will cover it because my docs says NO.
 
Lou,

We are in the exact same boat. I'm wasting away, i hurt, i'm miserable, my tongue is messed up, i'm loosing my butt by the day, my shoes don't fit, twitches are bad, i've got alot of saliva and you name it.

The docs actually have made life much more difficult on me, by telling my wife and mom that i am 100% neruologically clean. My wife doesn't want to hear it, she says i look the same and nothing is wrong and my mom falls into shambles when i tell her i'm not doing good. I tell you, if that doc was wrong, i will give her a piece of my mind.

This may be ugly, but i told my wife that she would be real sorry if i got diagnosed with ALS or something close b/c of the heartache she gave me. I think she just loves me and doesn't want anything to be wrong.

rgds,

jamie
 
Same thing...

ive told both my mom and wife, they will feel like shit if i eventually get diagnosed with a muscle disease...
 
Lou, you can't give up. There were times when I felt I reached the end for help, but think, make phone calls and get your own appts. You can find a way to do that. If it weren't for my persistence I wouldn't have any kind of diagnosis, even if it is wrong, to work with. At least now the docs have to listen to me. When I hit the end with a doc I would think about where to turn next. I have made appts. with rheumo, endocrine (which worked out very well for me), 4 neuros (I did 3 of them on my own), infectious disease doc, and even a general surgeon to talk about the lumps that no other doc could explain (inflammatory myopathy!). Think Lou and make your appts. Try infectious disease....you wouldn't believe the tests these other docs can think of that might just find it. Also, make an appt. with a counselor. Not only will it help you when the docs say it's all in your head, but it will give you someone to discuss different options with. My counselor has actually helped me look up clinics and docs. Also, there isn't any reason your general doc can't prescribe some aqua or other physical therapy for you. If there is supposedly nothing wrong, but you are suffering weakness, that's a great way to start building it back up. I go 3 times a week and have increased in my strength by 2 points since my diagnosed in July. If you want more suggestions I will think of them and give them to you. Just let me know. I just can't say enough that I don't want you to let it slide and deteriorate without an answer. Advocate for yourself.

And one other thing......even with a diagnosed my family acts like nothing is wrong. My mom actually said today, so what did the doc say, that you have some kind of mild myopathy or something. This is the woman that was with me at the appt. after my biopsy. I guess maybe she is a little attention seeking or something, maybe not wanting to believe, but either way I was really turned off. The feeling of being in this alone is overwhelming, isn't it.
 
Maybe they can create a KUU KUU house for us?
 
Im really not doing well. I see my body wasting away. Im 28 years old and Im scared. My 2 biggest supporters in my life are my wife and mother. They dont want to here it anymore because the drs say no neuromuscular problem, but the problem is i feel so sick and continue to get worse. Where I can turn for support other then here? Work is almost impossible at this point, I have no idea how I get through the day...

Wow, lhagsjr! I don't understand! Okay, you say you are not doing well. You are watching your body waste away, which I do not doubt, because I watched my son's body waste away before my very eyes! You said your 2 biggest supporters are your wife and your mom, and yet you say they do not want to hear it anymore, because the doctors are saying no neuromuscular problem. How can they be your supporters,, and they don't want to hear it anymore? What is going on? God bless you!


Irma
 
Irma,

It's hard to explain.

Did you, at any time your son told you about not feeling well, sort of question him? Probably not, as you seem like a wonderful caring mom, but if you ever just for a minute thought it could be psychological, then, lou and i are going thru that full time wiht our spouses / moms.

Not to say they don't belive something is wrong, but, they don't want to hear about our muscles any more.

I told my wife, i feel like i am on an island, alone!

As far as us saying they are our best supporters, they support us in wanting to make us feel better, but just as we can't get away from this disease, they can't get away from us. It's hard on everyone.

We / I know mine loves me with all her heart and i keep that in mind. I know, the reason why my wife does this is she 100% listens to the doctors. I can't blame her and when the doctor tells her i will be ok, that is the best option for her and she does everything she can to make that true, including, being hard on me to feel better....if that sounds right.

hang in there yall, we all need each other here.

rgds,

jamie
 
Irma

in addittion your son has a definitive diagnosis.
 
Jamie that was a great synopsis.

I will let you all know when I get the results. They did tell me that it seems like I have an intestal problem- with all the IBS, and UTIs I have been having. They think the yeast in my body may be out of whack post-pregnancy. Who knows.

Thank you Annmarie for the well wishes. To all of those out there who have lost someone to neurological disease - I am truly sorry. Sometimes it is harder on the survivors- as we are kind of talking about on this thread. My dad died 6 years ago today . . . Oh how I wish there was a magic cure.
 
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