Is this enough to finally get off the island?

[asiel1]

I've been in limbo for seven, long years. Recently I went through another slew of tests, and I will get the results on this Wed the 2nd of November.

Today I went to the Physical Therapist after four visits. She sent a report to my doc. When I checked out, I asked for a copy and waited till I got to the car to read it.

After so many years and so many NO's It's sometimes hard to look at results and reports.

I drove home, pulled in the driveway and decided to look.

Her diagnosis was ----
72287-- muscle weakness-general
340- Multiple sclerosis.

Is her diagnosis of my limitations enough to finally be a PWMS? or am I still in limbo til the neuro waves his magic wand?

LBJ

[jazzgirl]

Hate to say it but, no, she/he can't make the diagnosis. HOWEVER, somebody had to tell her that's what she'd be treating! They need to put the ICD9 codes in so they'll get paid.

Hope you get an answer finally!

[asiel1]

Thanks!
I sure hope so, this limbo thing really stinks-- and my probable alternative diseases with an actual "diagnosis" of Mild cognitive impairment and memory loss are very scary.

LBJ

[jazzgirl]

What, if any, other symptoms are you exhibiting?

[Shashi]

Unfortunately (or fortunately - not sure which), no. I'd have been diagnosed years ago if it worked like that. I remember when all my weird symptoms first started, and my doctor gave me a prescription for Provigil, my insurance sent a letter back and said they wouldn't pay for it because it wasn't approved for MS.

A year or so after that, I picked up one of my MRI reports, which read, "This 47-year-old woman with MS..." And a couple of times, my diagnosis on my superbill at my neurologist's office has read, "MS" (which they're not supposed to bill in an outpatient setting unless it's confirmed.)

Then there was the one rheumatologist's office which sent a letter back to my doctor who was trying to refer me to them which stated they wouldn't see me because I had fibromyalgia and they didn't treat fibromyalgia patients. (They diagnosed that from just reading my chart.)

I do hope you get some answers and get off the island soon. Being in limbo is the pits!

[asiel1]

What, if any, other symptoms are you exhibiting?

I have cognition and memory issues, communication issues, balance and motor skill problems- walking into walls, the fabulous foot drop, muscle spasms and pain, vision disturbances, numbness, tingling and twitching, and facial pain that runs from my ear to the top of my jaw.. and my all time fave heat related fatigue.

They all visit for a while and then leave. I usually have two major attacks a year, in Feb-March and then again in July-August- with mini attacks thrown in occasionally for kicks and giggles. The communication, memory and cognition issues are a bad days good days kind of thing.

Each of the symptoms came on a little at a time, with the vision and cognition problems being the first issues I had.

LBJ

[asiel1]

Unfortunately (or fortunately - not sure which), no. I'd have been diagnosed years ago if it worked like that. I remember when all my weird symptoms first started, and my doctor gave me a prescription for Provigil, my insurance sent a letter back and said they wouldn't pay for it because it wasn't approved for MS.

A year or so after that, I picked up one of my MRI reports, which read, "This 47-year-old woman with MS..." And a couple of times, my diagnosis on my superbill at my neurologist's office has read, "MS" (which they're not supposed to bill in an outpatient setting unless it's confirmed.)

Then there was the one rheumatologist's office which sent a letter back to my doctor who was trying to refer me to them which stated they wouldn't see me because I had fibromyalgia and they didn't treat fibromyalgia patients. (They diagnosed that from just reading my chart.)

I do hope you get some answers and get off the island soon. Being in limbo is the pits!

I am beginning to get the feeling that it's only going to get worse with healthcare reform. My eye doc of nine years refused to put Optic Neuritis on my chart b/c he did not want me to loose healthcare coverage.

take care,
LBJ

[mjan]

[QUOTE=asiel1;1328781]I am beginning to get the feeling that it's only going to get worse with healthcare reform. My eye doc of nine years refused to put Optic Neuritis on my chart b/c he did not want me to loose healthcare coverage.

First of all, I am so sorry for ALL you are going through. I too (after years of limbo) saw the DX line for MS so the radiologists reports always stated MS as the accepted diagnosis, instead of RULING it OUT (or in) as the neuro was trying to do.

Unless the Affordable care act (Obamacare) is repealed, you are protected from pre-existing conditons. Not sure why your eye doctor thought it would affect your coverage. Maybe did not want to lock you in with a diagnosis BEFORE you are protected from pre-existing condition.

I do understand why neuros are reluctant to diagnose MS, but then wish there was a category to help. Is it the MS DMDs that wouldn't be covered if you do not give insurance solid proof of MS diagnosis? Maybe others here will know that. I know some do get on DMDs w/o exact diagnosis. There is a "differential" category for most diagnoses..why not one for MS?

Hang in there.. I know its been a long long road. Remember it well~

Jan

[minivanmama]

Being in limbo is a pain. I am praying that you will get answers at your apt. Keep hanging in there.

Lots of ((((hugs))))

[asiel1]

Jan,

Thanks for the kind support. Yes, I agree there should be a "middle" or "pre-stage" prior to diagnosis, or non-diagnosis. In years past I remember reading about CIS or clinically isolated syndrome. I see it very rarely now when I read about MS.

I think the biggest injustice is the that by the time some are diagnosed it has progressed to a point where it is so bad the symptoms are slapping the doc in the face.

I believe in some areas, docs do put people on meds to see if symptoms persist. I think it is a good thing to do in some instances, and I am not exactly an advocate for drugs.

To tell the truth though this summer I would have guzzled fire if I knew it would make me feel better-- and that is with heat related fatigue as my main symptom .


LBJ

[empirerecs]

I'm sorry you are still without a dx. PTs can make a great case for you provided you have a doctor that really listens to them. I've found that a lot of wonderful PTs/OTs can really tell more about what is going on with a patient - physically and mentally - because they are able to spend a lot more time with them than the doc can. Good luck with your doctor!

As for insurance, MJan is correct. The laws which insure you will not get dropped because you have a pre-existing condition are supposed to change for good in 2014, provided they don't get repealed by a new regime in this coming election. Currently, there are insurance companies who will honor the new law. And of utmost importance, if you have continuous coverage through your employer or COBRA you cannot be dropped by an insurancer carrier!!!!!! I believe it is the same for self-insured but I don't know for sure because I don't know if you have to be reviewed each year. Only if there is a lapse can they drop you.

I don't understand why the doc won't put ON on your paperwork, the tests will indicate a problem and he has to legally code things correctly. I would ask him if insurance is the only reason.

[asiel1]

I'm sorry you are still without a dx. PTs can make a great case for you provided you have a doctor that really listens to them. I've found that a lot of wonderful PTs/OTs can really tell more about what is going on with a patient - physically and mentally - because they are able to spend a lot more time with them than the doc can. Good luck with your doctor!

As for insurance, MJan is correct. The laws which insure you will not get dropped because you have a pre-existing condition are supposed to change for good in 2014, provided they don't get repealed by a new regime in this coming election. Currently, there are insurance companies who will honor the new law. And of utmost importance, if you have continuous coverage through your employer or COBRA you cannot be dropped by an insurancer carrier!!!!!! I believe it is the same for self-insured but I don't know for sure because I don't know if you have to be reviewed each year. Only if there is a lapse can they drop you.

I don't understand why the doc won't put ON on your paperwork, the tests will indicate a problem and he has to legally code things correctly. I would ask him if insurance is the only reason.

oh who knows why doctor dann would not put ON on my paperwork. I do appreciate him trying to be helpful. My cognition issues are evident on some days, and I have found it makes many exceptionally kinder/more protective to me than they were in the past. I have been with blue cross blue shield for over five years. I will be fine.

I agree about the physical therapist, my neuro is an MS specialist.. but he's definitely more of a scientist than a people person. I will admit he's been the most detailed scientifically of them all, and I've had a few. My one gripe over this long haul is how quickly many of them say "NOT" MS ( at least in my case) when the McDonalds criteria asks the doc to make a case for diagnosis with several distinct episodes of symptoms over time.

It probably does not help that for a long time I was impaitient with the process, and incapable of being dramatic enough to get attention. -- now my specialist says I exaggerate my symptoms-- WELL duh sometimes the squeaky wheel gets the grease.

take care ya'll..

LBJ

[jazzgirl]

Actually, 2014 is the year they will NOT BE ALLOWED to deny you health coverage for a pre-existing condition. I'm all for that! (although I've been diagnosed forever, so it won't affect me)

Have you heard from the neuro yet, asiel?

[wrest53]

Diagnosis

asile1,

Here is my two cents. Worked in HC for years.

Those are ICD-9 codes--International Statistical Classification of Diseases and Related Health Problems: diagnoses code. They are used for billing. The PT can't get paid without them. The physician is supposed to provide them to the PT. Now, here is a few ways this plays out:

1. The PT got the codes from your doc--and he/she is leaving you out of the loop or needed to give them a code-and because he/she suspects you have MS--used them.
2. The PT asked you why you were there--and you mentioned a work-up or R/O (ruling out ) MS.
3. The PT or the doc made them up to get paid.

Notice on all test (labs, CT, MRI etc) the doc usually puts the codes. It became law a few years ago and they are finally getting used to doing it--but sometimes they don't . You should have a code on every procedure.

The problem here, as your eye doctor was aware of, it is now part of your medical record. Not so much a problem for health care--if as mjan says the HC Reform Act stays intact--which we as a group should hope is the case-- but to apply for life, or disability insurance—once that code appears on your record, they will deny you.

I hope you get some relief this week, if not, you may want to find out why a more generic code--like muscle weakness, which is a billable code, wasn't the only code used.

[asiel1]

Actually, 2014 is the year they will NOT BE ALLOWED to deny you health coverage for a pre-existing condition. I'm all for that! (although I've been diagnosed forever, so it won't affect me)

Have you heard from the neuro yet, asiel?

I have an appointment tomorrow at noon for results. Usually I hear from them by this point with negative results, so this might be a good thing.

LBJ