Status
Not open for further replies.

Kathylund

Active member
Joined
Aug 28, 2011
Messages
87
Reason
Learn about ALS
Country
US
State
Ct
City
Middletown
I see so many posting about limboland so thought I would chime in.

I have had symptoms for 1 1/2 yr, pretty much the same, my leg has some atrophy, it's gotten a little worse but not major, no weakness.

My main problem has been with my mouth. The way I would describe it is trying to talk when it's really cold out and it gets a little difficult. I also have feelings of numbness, that moves around my tongue. I feel like I have difficulty talking, but really only during a conversation. No one else notices anything.

I have been to, last year, 2 neuros, 2 als specialists, ent, family doc, emg, MRI, bloodwork and nothing! Not even a lead of what could be going on.

I do not believe I have als, my problem now, is because when I went to these drs I was in a highly anxious state, telling them I believed I had als, so now when I go to my neuro and my family doc, they kinda think I'm nuts! Hell, i would too. I want to find out what's going on, any ideas from you smart people would be great.

If there is a moral here, if you are undiagnosed, dont do what I did, don't go in there so freaked out telling them you have als, let them do there job.
 
Indeed Kathylund.
I definitely been getting scared but scared because i dont have a clue.
People are having trouble understanding me at times.
My own brother had me tell him certain things over and over or like when i was telling him USNS Arctic (a ship I sailed on previously)
I had to say U as in united and S as in state... etc..
Im having trouble with my fingers typing on this phone so i type on a notepad app first then make corections, then copy and paste.
But i try to think positive i do that by leaning on my inner child side which gets me through. Sounds silly but its true for me.
It may be hard at times but i have to think easy fix.
 
I lived in limboland for almost a decade. The most helpful thing I did was accept that I already had whatever I would eventually be told I had, so I'd best start living with it. Me and my wheelchair had tooled around mountaintops and the bottoms of waterfalls, visited some very inaccessible trails, and danced the first dance at my wedding before I was finally told why I was using one! It's a good thing, too, I went quad just afterwards. If I had waited, I would never have had those experiences.

The hardest part of limboland, I think, is that people don't think a condition is worthy of respect based on it's symptoms, but rather on what it is named. Now that's just silly, isn't it? But this is an internalized belief, so it takes a while to break out of it. My friends just called it Beky's Disease until the docs caught up. When it turned out I had a unique mutation, they felt justified in the name. ;)
 
Thanks guys! I guess I have always been a black and white kinda person, and grey (linboland) is tough for me. I did have a app at my neuro today and he is scheduling another emg as my leg has gotten worse. He is thinking it could possibly be from a disc in my back.

He has no idea about my tongue, but it all looks and moves good.

He did a complete neuro exam and everything else looked fine, no weakness, reflexes brisk but symmetrical. I finally felt that he was trying to help find something, instead of thinking I was a nutso, well probably when I went in a year and a half ago, I was pretty much a nutso.

I also believe what I have is fixable.

Life is good, I appreciate every day and I am very, very lucky.
 
Beky, you hit the nail on the head.

Those were the best, most insightful words I have read on this forum. It should go in neon lights.

Thanks
 
I totally agree about how much stock people place on having a name or label before they'll take you seriously... as if someone's challenges and suffering is any less real just because their symptoms don't fit perfectly into any one box.
 
Sure would be nice if we could all step into a machine and come out with a label.
 
Yes exactly about the suffering and labels!
I know im in limbo land but i got to be patient and wait.
You said it all very well.
 
The main thing that is hard for me which i constantly have said here and to family is i dont like whispers of people thinking im an adict or drunk. Im 45 look otherwise healthy so they assume things. But i got to let it go.
 
Becky, you are one smart lady!
 
Status
Not open for further replies.
Back
Top