back and thinking clearly

[CaptainPlanet]

Hello, my last post was fueled with post diagnosis anger I guess if you could call it that.

I had just been diagnosed with bulbar and respritory involvment by dr Mazziota of UCLA

I've since booked my second opinion at the ALS clinic at Sedar Sinai (if that's how you spell it) because still to this day my symptoms (in my mind) just don't fit any of the experiences i've read here or elsewhere....denial? maybe...

The EMG and my slurring of speech + breathing issues seemed to spell it out in spades for my dr but some things have gotten better and others worse since then which was one month ago.

ALS DOESN'T GET BETTER!

I needed a cane in sept for my right leg foot drop and that has healed itself! Unfortunately my breathing has only gotten worse. for Instance

THe most prominent complaint I've had since day one are these breathing episodes. Not gradual weakness although overall the weakness has been gradual BUT the weakness is SUDDEN then passes then leaves permanent weakness behind in it's wake.

I've learned to be able to predict a drop in the strength of my diaphragm. Sounds crazy right? Doesn't sound like ALS to me.

My diaphragm will first start to twitch hard, then jerk, then spaz, and then it's like my diaphragm DROPS and i'm stuck in a 3-5 hour long episode of labored breathing that lasts. My neuro put me on a heavy duty dose of xanex, colonopin, and ativan, plus a time release of seraquil and haldol to keep my brain in a permanent state of 'non excitement' so that he could completely rule out any chance of the attacks being anxiety.

So for me when my diaphragm acts up and drops out and I can't breathe, I don't even care which is a good thing but also bad because it rules out panic from being the culprit.

The body wide twitching is still there mostly in my stomache muscles and diaphram.

Again though, 27 years old with resp onset. Impossible I say! and the closest ALS clinic to me is in beverly hills which is quite the drive and Sedar Sinai is not in my network which means It's going to have to come out of pocket which also means a mortgauge on my house. Oh well....sometimes in life you need answers and when you live in the land of the free an the home of the greedy, it is what it is right gray beard?

Moderator note: for those who find this thread in a search please be sure to read the last post in this thread. This person fortunately does not have ALS

 

[Tokahfang]

Hello, my last post was fueled with post diagnosis anger I guess if you could call it that.

Fair notice - that post has you skating on extremely thin ice, you were an inch away from being banned. If you find yourself having another fit that drives you to make abusive posts, just walk away from the computer. You don't have any leeway left.

 

[CaptainPlanet]

I realized this which made me very nervous to come back here in the first place.

I'm sorry to all that I offended with my angry post. ALS is such a hard pill to swallow and I guess being so young I lacked the maturity required to hold myself back from venting my feelings for certain members here who continually insisted I was a hypochondriac during my 'limbo' phase.

There really not much else for me to say. I really only periodically check the GM604 news every couple of days and follow some threads here and there so I will tread lightly and not make myself visible too much.

That being said, I admit I've found a wealth of irreplaceable and priceless information through this site and will contribute where I can but I know that when I try to contribute it aggravates some. So what can a guy like me really do in this situation other than ask for a pass since i'm officially a PAL now?

Hopefully those that don't like me can see me in a different light and give me a pass for being a 27 year old 'be it childish one at that'

I hope those PALS that I have rubbed the wrong way will wave me over to their side because i'm officially one of you/them.

 

[cheerleader]

Anyone with ALS gets a pass from me! Good luck- maybe the 2nd opinion will be a negative one. Hope so for your sake. Donna

 

[Atsugi]

CaptainPlanet, be sure to let us know what your final diagnosis is. Yours is quite different.

Uh, you don't get a pass for being "young" at 27. At 27, I was 8 years into flying intel missions around Communist countries that were shooting at me. Time to grow up and accept responsibility for your posts.

As for "contributing" I think you mean "participating." We need to be very careful about whose advice we follow when lives are at stake.

 

[azgirl]

> I needed a cane in sept for my right leg foot drop and that has healed itself

Never heard of ANY case of ALS where this happened.

 

[CaptainPlanet]

aannnnd.... Now my left foot dropped....

Last night when I got up to use the bathroom.

Tripped while walking down the hallway. This time there was NO warning. No weakness in my left leg ahead of time (there was in my right). There were fascics but I have fascics body-wide.

ALS or whatever this is (still in denial before 2nd opinion)...seems to be have been trying to find a place to take hold for quite some time now.

It's always so scary when something new goes. Having my breathing be affected so harshly (almost on bipap full time) I have a taste of what's to come yet at the same time I feel I have NO Idea.

ALS is a monster that needs slaying. I just try to take comfort in the fact that there are tons of researchers out there that went to school for years in medicine that go to bed every night with ALS and PALS on their mind.

I don't know.

Be well everyone.;

Bless.

 

[skipper66]

BTW. I'm not a CALS either. I am not the caregiver for my dad. He lives far from me. I'm just a daughter watching my dad get crippled more and more everyday from this damn disease. I personally don't have a clue as to what he really goes through everyday except for what he shares with me and what I see when I visit and my brother/sister tell me. I try to be supportive of him and everyone else who has to deal with this disease. But, no I don't truly know how bad it really is them or my father.

 

[Atsugi]

CaptainPlanet,
I haven't badmouthed you yet.
This board welcomes those who contribute well, and honors PALS and CALS. Once in a great while someone will piss on the board and need to go away forever. Yoiu have the opportunity to stay and benefit from the board, and contribute to it, but given your history, you'll need to back up a bit. This board is unlike any other you've probably seen before. It's exclusive with a high ticket price.
Take some advice. Step away from the keyboard when you see a fight coming on.

 

[CaptainPlanet]

@Atsugi Duly noted sir.

 

[Tokahfang]

Captain Planet,

This community is very special. It has to be supportive enough to help people, but elastic enough to hold up under the strong emotions that dying and caring for the dying inspire. It is a place where those who are going through the worst or have seen a loved one go through it guide those who are still healthier than themselves in these matters. We put up with a lot in the form of emotional outbursts amongst ourselves and constant, wearying worriers from the outside. Moderating is a hard enough balance most days.

The simple fact is that you don't come across as very believable. I would hope that you can see that in your own posts, but if you can't - just trust me on this point. Being believable is a big help in a trust-based, ephemeral location like this one, and it is a help you don't have. That puts you on a very shaky foundation. People on a shaky foundation should step carefully.

Now let's say your story is true. If so you, you may not have ALS at all. There may not even be a name currently for whatever you do have, or it may be a unique variant of another disease. There may not be a community that fits you better or aligns with your experience better, but that leaves you as a squarish peg in a roundish hole here. This should also inspire you to step carefully.

People with more substatiable and sensical claims than yours have been booted because they just could not keep themselves from attacking other members. People with even less ALS-like descriptions of their supposed ALS have been peaceable and accepted members for a year or more. Some of them got good news and moved on to their post-ALS thoughts lives, and I hope that you do the same.

This thread is going to be locked. The next post you make should NOT be starting a new thread about yourself, that has obviously not gone well. Instead, read, learn. Participate by making a helpful post that isn't about yourself and your symptoms in someone else's thread. Refrain from posting in the PALS and DIHALS subforums until I let you know that you may.

If you have any questions about what you are allowed to do, PM me first. Forgiveness is not better than permission in your current position.

 

[Tokahfang]

Captain Planet got back to me on his progress in a visitor message. Nikki and I thought it would be good to append it here for those reading later:

"Hey Beky, just wanted to let you know that I am leaving this for good, not for an angry reason but for a good one. Just came back from UC Davis and was undiagnosed. She basically said she doesn't know what is wrong with me. She couldn't find any ALS in me despite me clamoring for a needle EMG of my tongue (because of the slurring). She did an ultrasound of my diaphragm and did find fatty infiltration and enventration (atrophy) yet me FVC was 100%. She said by now I would have had UML/LMN signs elsewhere and could not find them. She also said my hypperflexia is true but untrue. She said it was symmetrical and put me at a +2 but I have a negative hoffmans and plantar. SHe said i'm better off going the PCP refferrel route and getting to the bottom of this via the slow way because she does not see ALS in me whatsoever. The previous DOC saw 'irritation' of my nerves and also the atrophy in my diaphragm as well as the partially paralyzed hemi diaphragm but today that has gone away.

Anyways this forum has taught me a lot of about the character and suffering of ALS yet I respect and am aware I have no Idea." - CP

Good luck on your journey, Captain Planet. I hope that you recover fully and lead a long and pleasant life.