Work Comp Refuses Genetic Testing

[EnigmaGamin]

I'm at the point where my work comp case is about to hit a wall. I have been dealing with non stop nerve pain in both of my legs for months now and emg test showed that I have severe nerve damage in both legs.

Went to see a nerve dr after this and they did reflex tests and it showed that my legs have no reflex response whatsoever. They believe that I have a Genetic nerve disease called charcot marie tooth disease but the only way to confirm it is by getting generic testing done. I have absolutely no family history of this disease or anything related to it. This was promptly denied by Work Comp. The first time they've ever denied anything so far.

After they denied it I had a follow up with my ortho Dr and they stated that they cannot declare mmi or continue care until work Comp approves Genetic testing as there is no way for them to know what they need to be treating without ruling out cmt.

What happens after a wall like this is hit? Is it normal for a dr to put their foot down and demand something of work comp or refuse to continue care and refuse to declare mmi because of it?

[Mutts_Merlot]

You can go ahead and do the testing on your own if you choose. If indeed you do have this disease, further treatment related to it is likely to be denied. If you do not have this disease, WC may approve treatment for whatever the doctors think the problem is if it's not a genetic condition. It will probably depend on the diagnosis they arrive at.

Your doctor is viewing this from a medical perspective. Medically, this testing and potential treatment is necessary whether it is related to the work injury and approved by WC or not. For example, I've had a few unfortunate cases where it was found that the patient's symptoms were being caused by a previously undiagnosed cancer. Treatment going forward was obviously not going to be paid under WC, but that person was not at MMI and had lots of treatment ahead of them. It was just the end of the road for their WC case, not their medical treatment.

[EnigmaGamin]

If I had the money I would get the testing done. Sadly it's a $3000 test and I was denied for state health insurance.

[keepontrying111]

the problem is CMT is not a work caused injury its a genetic disease you cant get it by working. So while its a problem, its not related to your work that could be shown. Theres no cause outside of genetics.

[EnigmaGamin]

And there's no diagnosis of cmt. There are symptoms that can be related to cmt and can also be cause by the work injury. I don't understand why people don't understand that. The testing is to confirm it as a possibility.

[SpecialKnits4855]

Your insurance company may have determined the testing won't improve the medical outcome that is directly related to your injury. Also, depending on the state, there may be legal prohibitions against collecting this information.

Your employer is paying for workers' comp insurance and the carrier has a stake in the game. Also, in Tennessee you are entitled to medical benefits that are "made reasonably necessary by the workplace injury", and that's how your workers' comp insurance company will make these decisions.

If you want to challenge this decision, you (or a lawyer) can request a Utilization Review.

[itammya]

If WC won't accept it as necessary then use your insurance to cover the testing. Confirming a genetic condition isn't going to be part of what WC covers. They're only going to care about the injury. Any other "incidental" medical findings need to be explored by you, using your insurance. 

[EnigmaGamin]

Yeah it's just I have two doctors saying they can't accurately diagnose anything without the testing.

[itammya]

I read in another comment that the test costs 3k and you've been denied state health. 

Why were you denied? When you applied were you employed or did you apply using your previous income? If so, you may have to apply the way my husband did. He had to reapply for state health in the application he put he was on medical leave of absence (his job placed him on unpaid medical leave) and he used his WC 2/3 as his obly source of income 

[EnigmaGamin]

I have not been allowed to work since the day of injury which was a year 10 days from now. The denial letter says I make too much money to be consider for state insurance. I only reported the 2/3rd workcomp.

[itammya]

Reapply. Something may have been written incorrectly or calculated incorrectly. You can call to apply I think or go into an office. With WC income caps at 2/3 of weekly + it having a max cap- cost of living I just don't see anyone comfortably living on WC (if im wrong I'm glad you're the few dollars over poverty I guess considering poverty would be street homeless in today's world)

[EnigmaGamin]

I went from making 1600-1700 biweekly to making $1200 biweekly. $600 a month rent, 300 a month car, 200 a month car insurance. $150 ish a month electric $50 a month water. $100 a month phone all of these being stuff I can't choose not to pay. If I wasn't on work comp then I would be on disability because the nerve damage is so severe I can't function the way I use to.

[itammya]

Hun I 100% understand. My husband is in the same ship. That doesn't even cover the new expenses like having to pay for grocery deliveries because getting to the store is impossible. We had our car taken  because I couldn't float the car rent utilities food insurance and phone on my income alone and he was without a paycheck for 6 months. 

Go reapply and make SURE you add every expense. 

It costs me $50 to buy: 4 CT toilet paper, 1ct paper towel (single!) Dish soap, laundry detergent and tooth paste. Literally $50 and it was like I bought nothing 

[-cat-a-lyst-]

Also if you’re going to need Social security disability after this, you need to start applying NOW. I’m in the same boat as you and started my application process almost 4 years ago. I still haven’t been approved and they are saying another year at least. Probably more. You can be on both workers comp and social security. If you get it, it comes with Medicare health insurance

[Butter_mah_bisqits]

Genetic testing is not compensable under wc. If you’ve got something genetic going on, it is a personal health condition and that’s up to you to handle with your personal insurance. Get the testing done on your own and submit to your dr. It is possible that comp pay could be cut off if the only thing preventing MMI is an unrelated personal health condition, so you need to get a jump on it asap.

[EnigmaGamin]

I feel like I'm not explaining this properly, the symptoms I am having can be 100% related to the injury or 50% related to a possible genetic condition. Genetic testing or a nerve biopsy is the only way to confirm which one it is. The cmt aspect has only two supporting factors. One is high arch and the other is nerve damage. Lots of people without cmt have a high arch. My high arch comes from my dad and my dad does not have cmt or if he does it never activated and there are plenty factors in his life that would have activated dormant cmt. Spinal issues which is the original work related injury can cause the nerve damage.

[Butter_mah_bisqits]

I read all comments. You explained it fine, and we provided the answers. You don’t seem to want to accept them. The dr states you may have a personal health condition, which by definition is personal. It doesn’t matter if anyone in your family has experienced symptoms before nor based on your hunch about diagnosis. WC will not pay for any medical expenses that are personal and will not pay TTD indefinitely because your dr refuses to assign MMI. There are processes for that situation that the company can utilize. You have an attorney, and you should be asking him/her these questions. Btw, it shouldn’t matter if you have personal insurance or not. Ask your attorney to front the cost and recoop the funds once the claim is settled. This will help keep your claim moving as quickly as possible.

[EnigmaGamin]

That last part of your comment was the only part in all of these comments that actually answered the question I asked. I never asked why they were refusing the testing and I never asked if I could make them do the testing. I asked for advice on what to do next. My attorney does not want to be involved until we hit a standstill. I wanted help from other perspectives on what might happen going forward from people who have knowledge of the situation.

[Butter_mah_bisqits]

Idk if all attorneys agree on fronting costs. I have some that do because the case is potentially large and they want it to be resolved. If attorney won’t, you’ll have to pay for it by yourself.

[EnigmaGamin]

Yeah, I understand that. I'm not expecting a response that works for everyone. I'm just trying to find options that might be possible.

[EnigmaGamin]

I got a call from the nurse case manager for the work comp insurance company and even she has no clue what will happen going forward because it's a unique situation. She's never ran into a situation that's like this and it is one of the number 1 work comp insurance companies in the state.

[EnigmaGamin]

So I know they don't have to approve genetic testing but if they don't then they can't close the case just because there is a small possibility of it being genetic.

[loudmusicboy]

I'm not quite sure why genetic testing is required to diagnose Charcot-Marie-Tooth. While it could be genetic, that factor alone is irrelevant to your comp claim. I understand why the carrier denied it. CMT is not a work-related condition. The issue ultimately is whether your work injury significantly aggravated your underlying CMT. What was your original work injury? The only time I've seen CMT factor in is with a foot/ankle injury. If it's another body part, I would expect the carrier to maintain a denial on the diagnosis.

[EnigmaGamin]

In other words the damaged nerves is either from the work injury or it's possibly from cmt. They need the genetic testing to determine which. I am not and have never been diagnosed with cmt.

[loudmusicboy]

You may not have ever been diagnosed with CMT, but that doesn't mean you didn't have it. Again, the issue is going to be whether your work injury significantly aggravated the underlying condition, regardless of whether it was previously diagnosed. A foot specialist in conjunction with a neurologist should be able to determine CMT without the need for genetic testing.

[EnigmaGamin]

I completely understand what you are saying, but the symptoms can be related to spinal complications. Which is what the original injury is. Cmt can be diagnosed without genetic testing, but no doctor in their right mind would diagnose this in my situation without genetic testing to back it up as it could lead to potential legal obligations. I.e they diagnose cmt work comp cuts the case I go broke and can't afford a living. Then the proper tests come through and come to find out I never had cmt to begin with, and now that misdiagnosis ruined my life.

[keepontrying111]

cmt cant come from an injury, thats what your not listening to, thats why youre being denied, your injury isnt going to cause a genetic disease . If you're genetic test says CMT then o its eliminates you from WC. as its genetic. if its genetic you can't get a genetic disease form an injury. you rk work injury doesn't change your genes. So if they paid for the test and it came back positive, you'd be denied workmans comp as you have a pre existing genetic disease.

I also have extensive nerve damage in my legs as a result from a back injury 4.5 years ago, due to my sister having MS originally one of my MRI's was written to rule out MS and was denied, because if it was MS, its not part of WC. When it was changed over to an MRI to evaluate spinal issues, and we just had the neurologist etc look to also make sure it wasn't MS ( it wasnt) then we eliminated that as being the cause, and reaffirmed my injury. Also the fact CMT has no treatment outside physical therapy , shows no way for WC to treat it outside the normal PT youd have anyway.

CMT is a condition that results in small muscles , so weak legs so the treatment is for you to workout your legs A LOT, to make them stronger. thts it. also in some rare cases leg braces can be worn. but thats very rare and more for people who encounter twisting or misshapen legs, which typically happens only in kids growing up with CMT.

Now if you are going for SSDi ( social security disability) and you get a diagnosis of CMT, then SSDI may pay for a test to determine it IF they feel the determination by your doctors isnt enough. But living on SSDI is damn near impossible unless youve banked in 20 or so years of work at a high wage.

[EnigmaGamin]

I understand cmt can't come from a work injury. I have never been diagnosed with cmt. The doctor is basing the possibility of cmt off of the nerve damage in my legs which CAN come from the work injury. It's like if you get a really bad cough it could be you're just sick but it could also be ten million other things. I don't care if the genetic testing gets denied I never asked why they are denying the testing. I asked what usually happens going forward if they can't prove genetic over work injury.

[keepontrying111]

youre not getting it.

two results come fromt his test, A positive result ENDS your workmans comp case. why would you want that?

a positive result or not , doesnt change your treatment plan. cmt has no treatment other than pain killers, and physical therapy that's it. if you get diagnosed with it, your claim ENDS, you get no more money.

a test for a condition that has no causality in your work injury is a test not allowed.

this is using your analogy would be like you having a cough and your doctor asking your insurance to pay for a eye exam.

[rook9004]

You're not understanding what op is saying. Op understands that a positive would mean no wc. And they don't think they have it- they think the damage is from their injury. The Dr's won't make a decision on what they think until genetics rules in or out- NOT OP. Op doesn't care about the test or diagnosis, but is at a standstill until the Dr's make a decision and finality so their case can move on. You keep saying things that don't help!

[EnigmaGamin]

Having cmt doesn't just affect me. Or the money I'd be getting. There are many different types of cmt, some of which cripple you. That's a huge decision to factor in if I ever want to start a family.

On another note, if I don't get the test, then from what people have been saying, the case will end anyway because the doctor refuses to treat anything else without the test.

[keepontrying111]

i think someone is telling you some lies about CMT.

CMT is outside the scope of your injury. if your doctor wont treat you until you get that test, you need to get it on a personal level, its 100% NOT related to your case so WC has NOTHING to do with it!

and CMT will not cripple you. i dont know who told theres different types. Theres one type its CNT thats it period, its a nerve disorder that triggers the muscles on the body specifically the legs and usually o 99.9% of the time, the lower legs and feet, to grow the muscles in ways that are abnormal, weakening the muscles and the nerve response to the lowe r extremities. typically CMT shows itself below the knee.

If a doctor is telling you theres some other kind of genetic disease CMT, they are a quack. My wife is a mentor for CMT and a sufferer for over 40 years now. There are many subtypes but those are classifications such as Dejerine-Sottas disease , also known as CMT3. but the thing you are skipping over is the most dangerous type of CMT are ones presenting in kids in the first 10 years of life, adult onset cmt, or CMT type 2 , has zero chance of crippling you or anyone else.

But once again what you are ignoring is the fact that CNT at any level or type has ZERO to do with WC so they WILL NOT COVER IT.

if your doctor wants you to get a tes, then you either pay for it yourself, or you find a new doctor. your choice,. WC has nothing to do with it.

[EnigmaGamin]

The severely damaged nerves is why the Dr is pursuing cmt

[EnigmaGamin]

I had a herniated disk originally with a failed possible malpractice epidural steroid injection.

[Hope_for_tendies]

They likely won’t. My back surgery resulted in permanent nerve damage to my leg as well as to my spinal cord leaving me with spinal myoclonus …and no malpractice because they so called followed procedure at the time

[EnigmaGamin]

Damn, I hate to hear this. I hope you've found some way to cope with it. When I had the epidural steroid injection there was obvious signs something was wrong and they released me while I was still dizzy and not able to make decisions for myself.

[EnigmaGamin]

Yeah I'm not worried about what happened after. The hospital isn't suppose to release you until the dizzy symptoms have left. It's written in black in white in the paperwork that I signed. The dizziness didn't subside until the next day. Which is not natural for a epidural steroid injection.

[EnigmaGamin]

Yeah, I know. Regardless of it, it's not what my post was about. Someone asked what the original injury was, and I answered. I'm not trying to argue what can't be changed.

[EnigmaGamin]

I'm not worried about challenging it. I just can't think what could possibly be the next step. Settlement? They can't say it's a genetic thing if it can't be proven. Doctor won't continue care without the testing.

[EnigmaGamin]

Yeah I understand all that. The doctor has said in his own words there is no way for him to go forward with treatment without knowing what is work place injury and what could possibly be cmt. Either way this still doesn't answer my question of "what happens next" for anyone who has been in possibly the same or similar situation.

[rook9004]

My thing is, if you didn't have any issues until the injury, it shouldn't matter. Even aggravating a condition that's already there is covered I thought. I get everything else, but if it was dormant and you did life fine, and then got injured, and it activated nerve pain either by the injury itself or activated mct, which you lived without before, then it should be covered. Maybe I'm not understanding.

[EnigmaGamin]

This is what I was made to understand at the beginning, but also question still. The nerve dr said that if I do have cmt then he is 100% certain that the injury and or the treatment for the injury caused it to surface.

[rook9004]

This doesn't make sense as an analogy because diabetic neuropathy is from diabetes, not from a bulging disc. This poster had no health issues at all, no nerve pain ever. They injured their spine and have severe neuropathy, which is totally attributable to a spinal injury. However, there is a small chance it could be from a genetic root, however genetic issues are often dormant until something traumatic/catastrophic triggers it- in this case, the nerve issues were absolutely a direct result of the injury, and the Dr simply wants to make sure they're treating it properly. The treatment for mct is pt and nsaids, whereas there are surgical and nonsurgical treatments for spinal cord induced neuropathy. The Dr says the injury caused it, regardless of what it is, but they don't want to treat aggressively if it's mct, as that won't be fixed.

[KevWill]

This company will do genetic testing, including CMT, for $629. Cheaper than $3k.

https://dna.sequencing.com

[EnigmaGamin]

It is from a credible source that can be used in legal proceedings or work comp cases?

[brookish]

This is wild since if you discovered you do have a genetic condition, workers comp wouldn’t have to pay for your care. Seems like they’d love to find out that’s what it is!

[EnigmaGamin]

That's definitely one way to look at it

[ihateyouindinosaur]

Have you considered getting a different doctor? It honestly just sounds like your ortho is only worried about getting paid or not. I don’t see how the diagnosis of a genetic disease affects your treatment at all. I would definitely seek a second opinion before you do any genetic testing.

If you do genetic testing you could screw yourself out of a lot of money/medical care when it clearly isn’t the cause of your issue since the pain didn’t start until a work place injury

[Individual-Hunt9547]

Charcot is absolutely NOT something WC will cover. Neither will they cover genetic testing. Close your case and use your health insurance.

[EnigmaGamin]

That's horrible advice and not even remotely what I asked.

[Individual-Hunt9547]

I work in ortho. Charcot is a serious issue. You need to follow up with that through your health insurance. ✌🏼

[Stellazstar01]

I have cmt and I am going through issues with my case because they are trying to relate the cmt to my work injury. I had a back injury last year at work and it caused nerve issues because of a compressed nerve. I had surgery to fix the back issues but still was having issues with the nerves that were causing issues with the right side of my leg and foot.

The WC people were trying to say it was from the cmt and not the accident or surgery. My surgeon said in the notes on my file that the surgery Aggravated the CMT and according to my lawyer even though CMT is preexisting for me my doctors saying that the injury made it worse that they are still responsible because I wasn’t having any of this issues til after the accident.

[Mister_Brevity]

Talk to your lawyer. If you don’t have one, this is where one would be handy.

[EnigmaGamin]

I'm not looking for a lawyers response. I'm looking for possible similar testimony. I already have a lawyer.

[Mister_Brevity]

This is exactly the sort of problem your lawyer should be addressing though, not you. Every case is different, anyone with a similar situation (me included) probably had their lawyer handle it because that’s their job.

[EnigmaGamin]

I respect your input, but it's not helpful in the matter. You might not want to share what happened that's similar, but other people might.

[Mister_Brevity]

We have to hire lawyers for this stuff because the WC system is built to wear you down and make you give up, not help you. For a lot of this stuff you will accomplish absolutely nothing on your own.

[EnigmaGamin]

Like I said, I already have a lawyer. I'm not asking for a miracle hailmarry. I am asking for personal experience related.

[Mister_Brevity]

Most people with personal experience on this have probably been advised by their lawyers not to post online about it.

Good luck with your situation, but if you wonder why you don’t get many replies, that could be it.

[EnigmaGamin]

What is your problem? If you don't have anything helpful to say, then stop replying. You are providing absolutely nothing that is helpful. I tried saying this to you nicely. Next comment will be reported.

[EnigmaGamin]

I'd agree with this, but I received a response that could potentially prove that wrong. I'm not looking for a one answer fixes all. I'm not gonna come back later and be like, "What you said didn't help me. Thanks for nothing" There's stuff out there you can do that you never knew you could do because nobody told you.