Finally a little good news

[notme]

Hey Guys,

As some of you know, I've been fighting insurance and doctors for weeks now to try to find out what exactly is wrong with me and if the neurosurgeon I saw is correct.

Someone here suggested I contact the ALS society--which I did. Their counselor called me and put me on their list. Due to my inability to get anywhere--she said she'd call and get me in to the ALS clinic in Tampa herself.

Just got off the phone with them ALS clinic in Tampa. I'm going in sometime in May. So, finally, I will have my answer, hopefully. Both doctors there are neuromuscular disease specialists.

I'm still hoping that it's something else--but at least I'll know one way or another. I can start looking at other things if ALS is not the cause. The nurse told me not to bother doing an EMG/NCV here because Dr Vu does his own. So, the suggestion of waiting that the ALS counselor gave me was apparently a good one.

Does anyone know anything about the South Florida University ALS Clinic? Just curious.

Whatever is going on--at least I won't be in this limbo land too much longer, hopefully. I think the unknown is scarier than actually knowing what is wrong--at least it has been for me.

I actually did call the neuro office my insurance finally decided I could go see for an emg of ONE limb--I wanted to see if he was familiar with ALS. The person that answered spoke such broken English I couldn't understand him--but the gist of the conversation was "yes, yes, he very good with MS, he knows all" Needless to say, I won't be seeing them.

Is it very strange that after a year of this--that I'm the calmest today that I've been in almost a year? Crazy, right? It's entirely possible this doctor is going to tell me I have an incurable disease--and I'm finally calm. I don't deal well with the unknown. I've spent a year in a state of almost constant frustration at being generally ignored. I did explain that to the nurse. She said ALS being misdiagnosed for other conditions was very common.

 

[Tokahfang]

I don't think it's strange at all. If you have something that not just bothers you, but actively disables you (in your case, losing all use of your dominant hand), it is a relief to know that there was a cause for all that grief. It is a relief to know you did your due dilligence and checked for curable conditions, and that you don't need to be doing anything special.

When you know what you have, you can wrestle with it emotionally. For me, even if they found a way to stop progression, I won't ever walk, jump, sit up on my own, drive a cool manual wheelchair, swallow my favorite foods, yell, etc again. Those things are gone. When I was losing those abilities without knowing why, I couldn't come to any kind of emotional acceptance. The chance they'd find something curable someday or something that could go into remission kept me from bein able to settle. I worried that my lack of insurance had made it too late to fix something fixable. Instead, I was diagnosed with UMN disease. There was nothing they could have done earlier, no early intervention to have missed. I haven't been making worse (outside overuse damage on my joints).

That gives me freedom to just live my life, whatever my life ends up looking like. I can accept that this thing sucks, and that it always will. I can just be me, no false hope of a different life lingering in the back of my mind. I can invest in equipment, knowing I will need it for the forseeable future. I can plan around what will happen if my progression speeds up again, and what I'll need to deal with.

And yet, the first thing my doc asked me after he diagnosed me was, "Are you depressed?"... I almost laughed. It was a month before our yearly vacation to the mountains. Plus, I had just gotten my shiny TiLite, and I was eager to see how it would burn rubber on some of those hills, and what feats I could do with my new cog and tight front angle. An incurable neurological disease? That didn't impact my schedule or demand anything of me other than to do what I was doing: live life to it's fullest, right now.

I know my mom saw it as vindication for years of needling questions from family, when she could pass out information and shove the reality of the situation in the face of some of them. Then they were all, "I'm so sorry about your illness"... hello? I had been in a wheelchair 3.5 years already.

Ultimately, the me that left the doc's office was the same, just as sick or healthy or disabled as I was before I came in. But I could know things, label them, explain them, plan around them, and understand them. If you have something life altering, how could not knowing what it is be better? What's the point of pretending things are ok if they're not, wasting time if if turns out your time is very precious?

I could definetely see and respect where any PALS can disagree with me, due to the fast progression, facing mortality, etc, and I bow to them on that. An ALS diagnosis would and should cause grief... but relief in a way isn't as weird as it sounds at first.

 

[notme]

I honestly don't know how people deal with not knowing what's going on. My blood pressure is generally sky high--and I've been in such a state of stress that just finally having someone validate what I've been trying to show them for over a year helped.

But, the problem is that I'm trying to be practical and taking steps to be sure I'm being diagnosed properly--which is upsetting my daughter (she's 28) who thinks I should see the laser spine surgery center first--and have them fix the issues we know are in my neck, though the neurosurgeon says it's not the cause of my problems. She thinks I'm overreacting by going to the ALS clinic. She's lived with me since I had the blood clots and stroke in 2007. It's upsetting her that I'm trying to discuss the issue at all--and said she's happier not knowing because she can stay in denial.

Obviously, I won't be discussing my concerns with her anymore. I don't want her upset, obviously. It's been just her and I against the world for a long time now. We have no other family at all.

I wish I could make her see that NOT being able to talk to her is not helping me--I'm a person that needs to talk to someone--and right now, I can't do that.

I can't afford to live in denial--and kind of like you, I've been thinking that my crappy doctor was going to cause me to miss the chance of being fixed by not doing referrals. I'm still hoping that's the case--something fixable. But, I'm pretty sure what's lost already is lost forever. I doubt I'll get my left hand back, and that upsets me. My hands are my livelihood. I teach nursing assisting--very hands on training--and I write. It's very hard to type, though I still can--and my daughter has had to take over much of my classes because I can't do things like button shirts or file nails--no dexterity to do them.

I'm so tired all the time. Just exhausted. A trip to the scooter store to have my scooter fixed wore me out. I am not in bad enough shape physically to GET that exhausted from a two hour trip--but I am.

I'm thinking about things like getting life insurance before I have a diagnosis--and getting insurance that will pay for assisted living if I need it--what I'm thinking are responsible things--but she wants me to pretty much do nothing til I KNOW--by then it's too late.

Sigh--sorry to ramble. Just a lot on my mind today. I've got to go try and teach a class in 4 hours and I'm dreading it--because it exhausts me--but it's our source of income.

 

[Tokahfang]

I'm sorry, it's a bad situation.

I did want to let you know that there are a lot of writing solutions. You can type 30 or 40 wpm with just about any part of your body you've got, using the right softward. I'd recommend Dasher, it's what I used, but there are plenty of other options. Even just having the ability to twitch a muscle can give you slow typing.

 

[olly]

hi notme.

does'nt beky give great insight and advice.

just to add,i was in limbo land for 7yrs with possible this or that but all tests coming back normal even though my neuro exam was so abnormal and it was obvious something was wrong.
i too dont like the unknown...........i'm a fighter and like to know what i am up against so i can go at it all guns blazing.
when i finally found out what was wrong it was in part a relief,researching and becoming more aware of mnd also helped me understand how this desease is effecting my body so i can manage daily life according to symptoms and progression ect.

i really hope you can be seen at the als clinic real soon and get a more definate diognosis.............hopefully not als.

take care.
caroline

 

[Al]

I'd try to get Ins. before you get to the clinic. It may already be too late. If you get the proper assessment they'll tell you whether the problems are related to the cervical problem. That would be a good thing, at least it's fixable. Good luck.

AL.

 

[cukita99]

when i started it was 2003 on lft leg. in 2004 m ri showed cervical cord compression disc. had surgery but problem continue. next was my rt. leg, hands n speech in 2006 n then 2007 i got diagnosed with als

 

[BarryG]

Generally with life insurance if you have seen any doctor about symptoms of an ailment that turns out to be fatal it is too late, a diagnosis is not necessary. The time to take out a life insurance policy is before you tell anyone or ask anyone, even posting questions here could be considered evidence of a pre-existing condition invalidating the policy.

Not trying to scare anyone but be sure to read the fine print carefully.

 

[momofsixkids60]

Barry is right about the insurannce. I wass deneide covergae from the strart. I told muy husnabd to increaser mine but becuase it was connecvted to our helath care covcerage, they knew what tesrting was being donne. Good luck to you!
Kimberluy

 

[notme]

Thanks all. I was mostly concerned with coverage that would pay for some type of assisted living and pay to bury me. At least I got the health insurance that the ALS place will take.

I'm still hoping that they find some other cause of the problems--but whatever they find, you all have been great with tips and suggestions.

I found some Senior Life Plan that doesn't seem to ask any health questions--only pays like 8k, but better than nothing. Just have to decide if I can afford $70 a month.

Thanks for the writing tips. I can still type--just getting really frustrated because I'm used to typing 80wpm--and now, I can't make my fingers go where I tell them.

We won't even talk about simple things like brushing hair. I realized today it's likely going to have to get cut--it's to my waist, and my arm is starting to not want to lift above my head to wash it.

Thanks again everyone

 

[BeautifulWreck]

About life insurance.... We will be losing some of ours this year bc a physical is required for renewal of the policy based on the last four months.

Kim

 

[notme]

Wow, I can't believe they can require a physical once you already have the insurance to keep it!