Quitting Work Without a Diagnosis

[bluedog]

Anyone in the US been in the position where you couldn't work one more day due to
weakness and distress but had no diagnosis so you couldn't take FMLA leave in order to extend your health benefits for a few more months?

I need health coverage for 3 more months for a treatment my son is having. And I'm also scheduled for an EMG at the end of August that should seal my diagnosis.
But I literally can't work one more day. Can't fake it any longer. I'm in trouble with just about everyone I deal with at work because I haven't been keeping up with my tasks. And I'm just too weak and devastated now to go through the motions any longer.

Are there options besides just quitting or getting fired? I'm thinking of throwing myself on the mercy of HR, to see if they will let me use my acrued vacation and sick time without going on FMLA leave. I know that is probably exactly the wrong thing to do, trying to deal with HR, but I think it may be my only choice. I don't have enough money to pay for COBRA health insurance if I quit.

If you were in this position, what did you do?

 

[vickim]

Does your son have a diagnosis? Maybe it would qualify for FMLA. Are you the soul provider of the family?

 

[Txgirl]

Correct me if I'm wrong but won't this be your 4th EMG in 5 months? According to you ALL of your EMG's have been normal and every neurologist you have seen has told you that you do not have ALS. You have also said no evidence of anterior horn cell disease. This will be your 6th neurologist. I kinda get the feeling you want to be diagnosed with ALS to draw disability.
I can understand why you are in trouble with everyone at work. You are lazy!

 

[bluedog]

vickim, my son is in drug rehab for 90 days. I guess I could say I need to be with him, although he's not allowed visitors for 30 days. I thought of going that route, but don't know if it would work. My wife works too, so I'm not the sole provider. She doesn't have health insurance thorugh work nor is it offered.

Txgirl, my last EMG showed large motor unit potentials in multiple muscles, with no other explanation than ALS, no matter what the neuros say. Sometimes, when the medical field has reached its limits of care, you need to self-diagnose.

I have been at my job 21 years and never called in sick one day. Worked 7 days a week most years. Worked 12 hour days on average. Wish I was lazy. Then I wouldn't have gotten ALS due to exercising vigorously most days in addition to working long hours each day. Would do anything to be able to work.

 

[Txgirl]

You DO NOT have ALS! 5 neurologists have told you that you DO NOT have ALS! Stop diagnosing yourself!

 

[edwards5257]

I honestly don't know how you have convinced your neuros to do so many EMG s. I asked for one in June (one yr since my last one) and was told no need.

 

[vickim]

I am sure the state offers some type of insurance. I got my son's health insurance through the state (not welfare) until he can get a job and get his own and it was much cheaper than what we had before through our insurance company. You should look into it before you get a diagnosis. Once labeled it will be out of reach.

I believe with the FMLA you would have to get a dr to sign off on you being necessary to care for your son. Look into it.

 

[paul71]

I think because this is an ALS website, sometimes we get caught up in an "ALS or nothing" mindset.

I am in a very similar position to Bluedog - many abnormal EMGs, very weak, impaired function, spasticity, fatigue, pain. But I don't have a diagnosis. But just because Bluedog does not have ALS, this does not mean that there is nothing wrong with him.

In my case, my neurologist faxed over 100 pages of test results to my employer at the beginning of 2013. I got approved for intermittent FMLA. This has allowed me to call in sick 3 times this year when I was wiped out. The rest of the year, I have dragged myself to work feeling worse than I ever have my entire life.

I don't think Bluedog is lazy. He's freaking out because he knows that it's getting to the point where he just can't work anymore. Again - just because he does not currently meet the criteria for ALS does not mean that he has a clean bill of health.

Bluedog - ask your doctors to fax over your medical records to your employer. Even without a definitive diagnosis, you can get approved. And stop demanding an ALS diagnosis. Just try to get an accurate diagnosis. Perhaps your demands to your doctors are turning them off. Tell your doctor that you need FMLA. Maybe if you'd just keep one doctor they would work with you.

 

[JustTrying]

When you say 'devastated', maybe you need medication. Whatever is going on with me (increasing weakness and other als symptoms) is causing me a great deal of anxiety. I decided it was time to get meds to help me get through the day. It sounds like you need something similar. You may find getting the anxiety under control will enable you to perform better at your job. I was just thinking today about how I am going to continue work if this weakness gets worse. Not easy to think about leaving your job in your 30s. Ugh

 

[paul71]

Wish I was lazy. Then I wouldn't have gotten ALS due to exercising vigorously most days in addition to working long hours each day. Would do anything to be able to work.

If you read my previous post, you'll see what I did to get intermittent FMLA without a diagnosis.

But stop insulting all the PALS on this forum by stating that you have ALS! You make these definitive statements like "I have ALS" and that you got it due to exercise that have no basis in fact. Is this how you talk to your doctors? "I have ALS and I need you to diagnose me"?

You need an ACCURATE diagnosis, not an ALS diagnosis. And some sort of anti anxiety medication would probably help you. That's not an insult. You will physically feel better if you get your anxiety under control. It has helped me. It's nothing to be ashamed of. Just do it, for yourself and your family. If you get your anxiety in check, you might be able to continue working.

 

[Jwh1]

Check with your state social service offices, each state has their own programs for people in need especially children in need of health benefits. That said, I don't believe working out will cause als, you know as we get older we can't do as much as we used to today as we did yesterday, I don't think it means there is something wrong, see somebody for your anxiety and listen to your doctors, you won't have a diagnosis without them. And just be happy their not saying you have ALS.

 

[ruthiep]

Bluedog.....Are you absolutely flipping insane or just a nasty filthy troll (perhaps both)?

I quit following the forum or posting as frequently due to people like you. Tonight however, I think I'll make an exception....

I went back and re-read your previous 33 posts and let me re-cap some of the absolute insanity you've posted:

You started developing UMN symptoms in 2002. February 2013 you saw an ALS specialist, had a normal clinical exam as well as a clean EMG. March 2013 you saw the head of an ALS clinic as well as 2nd neuro. Again, a normal clinical exam. March of 2013, you saw an ALS specialist at the Mayo Clinic. Again a normal clinical exam and clean EMG. April 2013 you met with the Mayo neuro again who said they were 100% sure you didn't have ALS. In later April or May 2013 you met with a neuro at Barrows resulting in a normal clinical exam and no diagnosis of ALS. On 06/25/13, you stated you had seen 5 neuros in 4 months, one of whom you described as "completely insane". Your 5th neuro appointment and EMG resulted in nothing new, however, in you own words, your neuro referred to you as being "delusional and psychotic" DESPITE ALL OF THAT HOWEVER, you stated on 07/07/13 that you obviously had ALS. You are now waiting for another EMG at the end of August that should "seal your diagnosis" MY QUESTION IS THIS----a diagnosis of what....complete insanity?

You know what, I'm not having a bad day or night....I'm simply calling a spade-a-spade. Your posts are incredibly insulting and offensive to me and likely to other PALS and CALS. My husband has ALS and is dying. You sir, DO NOT HAVE ALS. I wish with every fiber of my being that I could give you my husband's ALS diagnosis as you are damn sure hell-bent on wanting this beast of a disease. However, even as much as I despise the tripe you continually post, I could never wish this disease on anyone, not even you.

Do yourself a favor, go see as many mental health professionals as you've seen neuros. There is medication available to treat your morbid fascination with this disease and other issues you are apparently suffering from. Continued posts on this forum aren't the answer.

Ruth

 

[bluedog]

Thank you for the useful suggestions. I have clonazepam and Celexa and will probably start taking them.

The thing is, during my last EMG, the dr told the Fellow, "That's spontaneous activity. There's a lot of cross-talk." To verify, I then asked if he detected fibs and psw. He said he'd have to examine the results afterward, that it could be that someone just kicked the EMG table.

Well I didn't kick the table. I was elevated and lying still off to the side on an examining table. The med student was standing by the door, out of range of the EMG table. If the Fellow kicked the table, I'm sure the dr would have jumped down her throat. And I doubt the dr kicked the table. Maybe someone snuck into the room when no one was looking and kicked the table. I'm really not sure of anything anymore.

Because the report said no spontaneous activity, I put in multiple calls to the dr's office asking how he determined that there was no spontaneous activity after saying that there was. And I'm hearing nothing but crickets from their end.

So either the analysis revealed a table kick, which is highly unlikely because he would have let me know to get me off his back, or he never recorded that portion of the test for analysis. The latter is more likely since the dr said to the Fellow that he records the testing when ruling in ALS but only listens when ruling out, which he said he was doing in my case.

It seems like something is amiss here, which is why one of my other neuros agreed to repeat the EMG.

So the absurd notion of a kicked table is the thin line between "no evidence of anterior horn cell disease" and "large mups with spontaneous activity, indicative of anterior horn cell disease." Kinda hard to sleep on that one.

So now instead of being knee-deep in residency in Oregon, its back to work until the end of August, with people wondering why, overnight, I have only half a face and sound like Brenda Vecarro, and never leave my office anymore, and choke periodically during the day, and am generally incompetent after being such a high performer. Although most don't get past the half face thing. It's not like bring your daughter to work day. There isn't a half face day. So it's a big deal when you show up with one.

I don't mean to offend anyone.

 

[Barbie]

Where is Dr. House when you need him

 

[skipper66]

You don't pick up any type of disease by working too hard. That is the dumbest thing I have ever heard in my life.