New Question for ALS knowledgable Folks

[notme]

HI

Briefly, I'm in a 'suspicious of ALS" disgnosis--with cervical problems ruled out by MRI neuro "highly doubts'" bilateral ulnar neuropathies.

Here is my question. I've been fighting insurance comp. trying to get the EMG and NCV the neuro said i have to have 'expeditiously'. Not getting real far, either.

I called one place the neuro recommended, and was told I can NOT self-pay for testing if I have insurance--they said it's fraud.

I finally called the ALS foundation and got a referral to a neuro through them. They WILL take self-pay, but it's at least 2k to do so. They are an ALS clinic, thus, specialists. The nurse there told me that the EMG is only as good as the physician obtaining it--and that I am better served by having it performed by an ALS specialist.

So, finally, the question: Is that true? Have any of you with ALS had an EMG improperly performed and had to repeat it with a ALS specializing physician?

I would have to change insurance plans to see this clinic--but am wiling to do so if you folks feel it is in my best interest.

My signs, not just noted by me, but in the referral letter to the specialist are: abnormal reflexes without myelopathic findings. She has obvious atrophy of the hopothenar eminence and the thenar eminence, more pronounced on the left hand

I have no idea what thenar or hopothenar even are--but will look them up. The atrophy I see is between my thumb and forefinger and at the edge of my hands--on both sides. Symptoms started on the left with the fingers just not working at all. I still, after a year, can not use that hand for anything that requires fine motor skills, such as opening a jar, turning a key, spraying af can of something--which is what sent me to the doctor over a year ago. The atrophy didn't show up for several months after that.

I'm having some signs in my legs--by my own observation. Weakness (I've fallen several times) and severe cramps.

THanks for any input

 

[trfogey]

I finally called the ALS foundation and got a referral to a neuro through them. They WILL take self-pay, but it's at least 2k to do so. They are an ALS clinic, thus, specialists. The nurse there told me that the EMG is only as good as the physician obtaining it--and that I am better served by having it performed by an ALS specialist.

So, finally, the question: Is that true? Have any of you with ALS had an EMG improperly performed and had to repeat it with a ALS specializing physician?

It happens. Mostly, it depends on whether the ALS specialist knows and trusts the physician doing the original EMG, how conclusive the EMG findings were, and whether the specialist's clinical exam verifies the findings of the EMG.

Doesn't necessarily mean that the original EMG was improperly performed either, especially if a significant amount of time passes between the first EMG and the initial consultation with the specialist.

I suspect that the nurse you talked to had a little case of "specialist's superiority" going on with herself that day.

 

[Alyoop]

OK, Notme , explain to me before I self destruct, why YOU cant get a neurology appointment when you so obviously need one, and then I read about a person with NO signs at all being given an EMG, JUST to allay their anxiety, with NO other indication at all! If I had the money, I would stick you on a plane and get you to have an appointment and EMG done here. It would only cost $500NZ for the EMG and $360 NZ for the consultation. Oh I wish we had a transportation device like on Star trek. (yes I just watched the film last night)
Your AVATAR should be NOTFAIR, instead of NOTME

 

[Tokahfang]

Man, that's just ridiculous. I don't understand your insurance. When mine doesn't cover something, I just get a bill later. Why can't the neuro testing place bill you after your insurance declines? I was better off than that when I was completely uninsured!

I don't know that I would switch my insurance carrier and pay $2000 on top of that for the tests. It would be worth it if you have something treatable/curable and they found it. But if it isn't, you just payed a lot of money to know there's nothing to be done and hopefully get equipment support from ALSA and the MDA.

Tough choice... I'm sorry.

 

[TedH5]

It is true that the EMG is only as good as the person performing it. Have you tried to have the Neuro call your insurance company? Insurance companies have Dr's on staff that will do consults with your Dr. I would definitely fight the insurance company and see if yout Dr calling or someone on his staff calling could be beneficial.

 

[notme]

Don't know Aly. Guess I'm failing at being *****y enough with them. I've called literally 20 times since I got that letter from the neurosurgeon. I've called my doctors office and my insurance--and am in a holding pattern.


And that's where I'm at. I don't have 2k. I'm already on disability with medicare--but I opted into one of the damn HMO things that's useless. I have already had it confirmed by the neuro that it's not from my neck and it's not some type of ulnar or carpal syndrome. What does that honestly leave?


IF I do have ALS-there is basically no treatment anyway. Aren't I better served not spending money I can't afford for a confirmation of a diagnosed that is going to ultimately be non-treatable?

The thing keeping me going is the POSSIBILITY of it being something treatable. But, honestly, I don't believe it will end up that way. I have a long hx of being largely ignored by doctors until my sx progress to the point where a blind man can see a problem. It took the obvious atrophy in my hands to get to the neurosurgeon. The inability to USE my hand for months proceeding the visual indication were ignored. My heart problems were ignored until I collapsed and they couldn't ignore me anymore. The blood clots symptoms were ignored until my breathing was so bad, the 02 sats showed a problem--thus the studies to find and treat the clots.

I've been doing downhill ever since. IF I have ALS--I also have something else going on. From my reading of all you folks--I shouldn't be feeling as bad as I do with my only real ALS symptoms being only in my arms and possibly weakness in my legs.

I can swallow--but I'm chocking a lot. I'm having breathing issues--but then, I have asthma.

I honestly don't know what to do. None of you really feels "sick" with this, right? Mostly just weakness and inability to do things? I feel sick. I have absolutely no energy at all. Walking up my steps exhausts me.

I drove yesterday for the last time. I am having trouble lifting my foot--it's like it's not listening to me telling it to lift up off the pedals. I tripped in the store I went to. Would I REALLY be this weak at this point?

I know you all tell all us "Do I have ALS" crowd to talk to doctors--but that's simply not working for me. Were I someone you loved--what would you tell them to do at this point?

the ALS clinic seems to think I'm better off being seen by their doctor--and I tend to agree. I can change insurance, but the prescription plan on the other carrier is awful--my rx's are over 1k per month--I don't MAKE 1k per month.

Ultimately--if the indications are strong for ALS--do I really NEED to have that confirmed? As I've read--there are really no treatments.

I read in the PALS forum somewhere that ALS isn't painful. I have a lot of pain. But is it from my back or my neck or? Morphine isn't helping a lot--but then, my dosage hasn't been raised in a year.

Most of you aren't on any pain meds, right? The only med I take that helps is the valium they gave me for all the muscle spasms and cramps. THAT helps--but it also knocks me out.

Ok, done whining. Thanks for listening.

 

[notme]

HI Ted

Yes, the neurosurgeon office DID call the insurance company=-and they faxed their findings--to the insurance, to my GP, and they mailed a copy of that letter to me. He's out of it now--it's not my neck or back, so he can't help me--and he doesn't do any testing in his office. His specialty is neurosurgery.

I don't even think going to an ER would help--I'm not in any type of immediate danger, so I doubt they would do any testing there, either--which is what the insurance company rep told me to do. Why would they pay for a specialist and then refuse his orders? It makes no sense to me at all. I'm afraid I lost it on the phone with them and ended up hanging up on them.

My temper is just a tad short right now. In this country, it just shouldn't take visible atrophy to have gotten me to the neurosurgeon. The inability to use my dominant hand SHOULD have been enough. I think part of it is I have so many medical issues going on that I'm too complicated for them to figure out.

The atrophy is worsening. It's become visible slightly on my right hand by my thumb and forefinger, and more so on the pinkie side of my hand. The fasciculations aren't painful--but they are constant almost. The doctor saw them, and noted them in his report. He told them about the reflexes. I'd think anyone doing an EMG would be able to see what nerves to test based on the visible signs.

I am kind of surprised so many with nothing but twitches are getting right in within days of symptom onset. If I knew how, I'd upload pictures of my hands.

I'm compensating for a lot of the hand issues with my arm itself. I can carry things with my arms. I use my arm to support my cup that I drink out of. I mean--I really can't hold a mug of diet coke--why isn't that making the doctors say "We need to diagnose this".

Maybe my pain doc can do something--though I'm afraid to tell her what the neuro wrote--because I don't want to lose my pain meds.

If I haven't said it before-- I definitely appreciate you folks taking the time to read and respond to my rants.

 

[Northern Dancer]

Why in heaven's name aren't people fighting for universal healthcare in the United States?

Last month I was informed that I require a medication that costs $12,000 a year and I will have to take it for 2 years. I HAVE to take it. Happily, the government of Quebec is going to pay for all of it. I can't imagine the stess of having to beg an insurance company to please, please pay out each and everytime I am ill. Isn't being sick demoralizing and stressful enough? Being ill just isn't a choice.

I must say that I feel sick each time I read that someone has to fight to get the help that we in Canada take for granted everyday. Like Aly, I wish you all were here.

 

[notme]

I used to live in Canada. I'd love universal care here. The problem with it, from what I found when I was there--is that it takes forever to get anything done. When I was there--people were waiting months for an MRI, for instance.

Here in the US it's more that some insurance is better than others. No docs here will bill for anything. Hospitals will--but they won't even test for things that aren't considered potentially life threatening.

Last time I was in the hospital--with blood pressure of 210/135---they came in wanting $200. My blood pressure sky rocketed immediately as I became more and more agitated--and my daughter kicked them out of the room.

I'm a horrid patient--and I freely admit it. I was kicked out of the last hospital I was in--literally--at 5am because I refused to let them put on the cardiac electrodes that I'm severely allergic to. The doctor told me to leave. That was a year and a half ago--I haven't been back to a hospital for ANYTHING since then. My chest had taken MONTHS literally, to heal from the previous time I'd worn the electrodes. Heck, I didn't even KNOW they could kick you out of a hospital. They had the audacity to bring security to my room and demand that I sign an AMA (against medical advice) form -- and I refused--I didn't leave against medical advice--I was TOLD to leave. So, here I was standing at the curb at 5am waiting for someone to come pick me up. That won't happen to me again.

IF my ultimate ALS diagnosis is ALS or some other UMD--I will never let them put me in a hospital for any reason. I spent 30 days in hospital from blood clots--and was treated very badly by them because I insisted on knowing why everything was being done. I won't blindly follow ANY doctor order--I want to know why--side effects, etc. They don't like that mentality, it seems.

other than my pain doc--i hadn't even gone in for the monthly blood work I'm supposed to have when on blood thinners. I am just sick of their attitude. I hadn't been to a doctor at all since last August when my meds needed their refills done. I was blown off the December before when I went in because I couldn't use my left hand. No tests--just blown off. Other than listening to my chest, they don't even TOUCH patients any more. How can they diagnose us when they don't touch us? My GP never checked my reflexes--not ONCE--thankfully, the neurosurgeon did.

Part of me just wants to say to heck with it and just wait and see how I progress--I'd almost do that if it wasn't for the fact that my symptoms are scaring my daughter to death.

Now, even after all the time I haven't gone in for anything--once more, they are blowing me off. When I choke on something, or fall down the stupid stairs--maybe they will do something to ALS diagnosis me. In the meantime, i think I'm going to be stuck at their mercy with regard to diagnosis. I've tried to be proactive and am not getting far at all.

Edit to add new update: I just got off the phone of a diagnostic center here in Orlando. They do EMG/NCV--and apparently are willing to do a payment plan. I made an appt. Question: They said the test is done by a physarist (sp?)- not a neuro--should I wait and keep fighting for a neuro to do it? From their website, I gather this is some sort of a pain clinic--but i'm at a loss as to where to go. I tried the two hospital systems on my plan, too. Neither does EMG/NCV apparently. I'd have to drive to Jacksonville--a 3 hour drive. I can't handle that long in a car.

 

[Northern Dancer]

I can't say that I have shared your experience with long waits in Canada. I had one day of double vision, saw my doctor that day and was immediately sent for a brain scan and seen by a neurologist.

I happily waited 6 weeks for an EMG. It wasn't urgent. I didn't think that was excessive.

My son in law only waited for 3 weeks after his brother died of a brain aneurysm (in his sleep) to have an MRI to rule out the possibilty of a familial weakness. The whole family was tested. My son in law was found to have an abnormality in the same part of his brain and was seen immediately.

Should I have to wait in line so that someone who needs a test or treatment more urgently than I do can get it done before me? Yes. In medicine the most critical should be seen first.

We do have the option of using private insurance to have any test done immediately even if it isn't urgent. No waiting for permission. If the doctor orders it- it's done.

No system is perfect. Humans are in charge. But the injustice is that in countries without universal healthcare, you may not even get to stand in line. That makes me feel sad.

I truly hope things improve for you.

 

[Tokahfang]

Look at it this way - with all that atrophy, you're not exactly a finicky EMG to do. If the phsyiatrist one does show something, that will more ammo to shoot at the insurance company.

 

[HelenL]

We need to have a better health care system in this country. I am very lucky to live in Massachusetts (though I complain about the taxes!) where we have a universal health care plan. I'm paying a nominal amount for health care coverage here (its called Commonwealth Care, or MassHealth if you can't afford to pay anything) and it paid for ALMOST everything I need. My problem is finding providers in this area who take the insurance, but all the hospitals do. The only other problem is they won't pay for Rilutek (still working on that one) which costs $1K month... again, it is ridiculous for the drug companies to charge that much.

Notme, have you contacted your State Senator's office for help? I would go and make some MAJOR noise about this insurance company. This is a medical procedure, not one you're doing by choice, and they should be paying for it. I would call the local and the Washington office of your senator and get them working on it.

 

[notme]

HI All

Latest update: No, didn't contact state senate--but did get in touch with the ALS society here in Florida. They are going to help me get into the ALS clinic in Tampa.

I read the letter of findings to their counselor today--she has recommended AGAINST my doing the self-pay EMG/NCV with a physisarist (sp?) and that I wait til I can see someone who specializes in MND rather than someone who does not.

She signed me up with them today. Apparently the neurosurgeon's opinion is enough to get on their rolls--and now needs either a confirmation or a diagnosis of WHAT MND I do have. I'm taking her advice. I'm going to get into their clinic as soon as she can get me in. She also has told me to sign up with MDA--again, I will do so.

Our power was out all day with electrical problems in my building--but I'll be playing phone tag again tomorrow. She also told me that they have a lending closet and will help me with anything I might need.

If she can't get me into their clinic with my insurance, she said that the MDA would get me into theirs--she contacted them for me. So, it looks like I will be getting my tests--just not today or tomorrow.

So--apparently, the EMG IS only as good as the doctor giving it--she also told me that the clinic here would NOT take the one done privately as "golden" and would want their own--she said it wasn't an extremely painful test--but not comfortable and that I don't want to have it done more than necessary. I'm with her there--I wouldn't have it at ALL if they could diagnose me without it.

So--do I have ALS? Who knows--but apparently it's very likely to be some form of motor or muscle disease--as the MRI has ruled out neck issues and the doctor doesn't believe it's bilateral neuropathy of the ulnar nerve.

I guess I'm going to try to think positive--but to be honest, I'm not feeling real positive right now. All bloodwork they have done is normal.

She sent me a list of questions I should ask the neuro, too.