"You do not have the right to healthcare"

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DeOly

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Could someone share thoughts?
Nerve conduction normal.
Occasional fascic. present in right FDI, right gastrocnemius and right personal muscles.
Increased insertional activity with fibrillation potentials and positive waves in the tibialus anterior muscle.
Motor units in the Right EIP, FDI, triceps, gluteus medius and vastus lateralis muscles are polyphasic with high amplitude long durations. There is also reduced recruitment in these muscles.
My MRI of lumber not perfect but neurologist did not believe explain emg. A MRI of brain / cervical is referred. As I'm a medically indigent adult, I'm having a difficult time getting the free clinic to simply respond. The title heading was what the RN said to me yesterday when I asked about getting the referral from clinic.
 

Atsugi

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NCV/EMG/MRI are used for many things, so I have to ask:

How about a little bit more info from a different perspective: What can you NOT do? Are you walking, talking, buttoning shirts and eating OK? What indications did your GP medical doctor see that led her to refer you to a neurologist?
 

DeOly

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Another funny quote from my neurologist.
After noticing crazy twitching in legs that looked like small animal crawling under skin, shocked and disturbed, I of course went straight to the research library at Johns Hopkins. Just kidding, Google is so much quicker. I typed in twitching in leg. Bam, faciculations of course popped up. So I went to the usual wiki, then a few others so I understood clearly they were not baby aliens about ready to hatch.
My first visit with my neurologist i mentioned the faciculations and asked what may cause them. He slowly looked away from the computer (which I heard him refer to as a machine) he was busy hunting and pecking on, looking over his glasses and through his eyebrows he said "where did you learn that fancy word"?
 

DeOly

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I'm doing all that, but some with greater and greater issue. Weakness in legs that is progressive, feels as if individual muscles are torn. Wobbly weaknees, tripping over feet loss of balance. Rigidity in what I guess is tendons, especially Achilles, which not relieved by stretching. Mostly my muscles are flacid when relaxed but sometimes they become tight and toned, there is some pain in this, bearable, but become very tired and weak while using. Joint pain also, I assume associated with tightness. Small hand movements have become more challenging, writing, money out of wallet(,not that there is much of that, ha) buttons and a new first, I could not put my belt on without taking off my pants(not overweight). It seems the last 6 months the progression has moved from legs to arms, I have lost muscle and strength. While leg progression slow the spreading to upper body much quicker, with loss of strength making even opening a jar an issue. I can see atrophy, mostly symmetrical, but not total. I do eat, while that also has changed for a number of reasons, but I do try to eat as healthy as possible and at least every day.
 

Clearwater AL

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DeOly, your last sentences...

"My first visit with my neurologist i mentioned the faciculations and asked what may cause them. He slowly looked away from the computer (which I heard him refer to as a machine) he was busy hunting and pecking on, looking over his glasses and through his eyebrows he said "where did you learn that fancy word?"

So... what did he/she say after that?
 

DeOly

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I have no GP. I make to little for ACA and to much for Medicaid, i I'm fortunate like 2 million other in my state who fall in th at no man's land. So after trying my best to Man through it, i was falling, literally and figuratively. I searched out the only free health clinic available. As one may imagine, it's not the Mayo clinic. A RN is your GP, which is fine, but I went through 3 of these because they kept losing them. And what took me a matter of a week or two with insurance took months.

Finally a few months shy of one year i was scheduled with the volunteer neurologist. It wasn't until my third visit with him that I realized he didn't remember me or know how to use the clinics computer to review my records. He had not even reviewed my records! The frustration was unbelievable, a true test of patience. An EM G was ordered, abnormal, with polyneuropathy. I asked the usual questions, what is causing the neuropathy, is this reason for fasciculations, is it axonal or demylinating? answers "unknown cause, let's wait 3 years and see where it goes, your faciculations if you have them are from stress, and an EM G can't determine between axonal and dymelinating.

Over the course of year and half i had a handful of follow ups. Three that he actually touched me for neur o work up, of which he found absent reflexes and loss of reflexes from previous exam. On each of these three exams he ordered a full body EMG. But the RN advised him that there are no neurologists available to them on each occasion. I pursued this, asking why the local hospital neur o clinic was not taking referals, the RN said they simply were not taking charity care.

My decline continued, knowing the Free Clinic was of no help i went to ER. They gave me a referal to the local hospital neur o clinic. In two weeks i saw neurologist who ordered EMG. This is the EM G I posted. She said that the last EM G was incorrect, likely due to a cold room and that was very common. She then referred me to get lumbar MRI, which came back with issues but does not explain EM G results. She wants to do brain/cervical. I did have an MRI almost two years ago, but I assume, this also does not explain and she would like current(me too). To bad a full MRI was not ordered to begin with.

But now I'm trying to get the neurologist at free clinic to approve so that it's covered. Strange that he had wanted a full EM G so long ago, but now that I had one I'm running into a wall. Obviously after so long of battling and slowly losing I'm anxious for help, treatment and answers. This brings it to current, when I was told by the RN " i have no Right to health care". Of which he is sadly correct. Do I read this as a threat that they will no longer see me? There is much more to this story, unfortunately. I wonder if he realizes that even non profit health care entities have guidelines or if he believes its their right to operate any way they will because they serve the poor? It seems the latter.

I have recently discovered the term, medically indigent adult, MIA's, where you are treated as sub human and there is no concern if you fall before diagnosis, treatment or cure. S o here I am, trying to research, search and hopefully find some helpfull, knowledgeable advice not from health care providers but from the other side.
 
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DeOly

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DeOly, your last sentences...

"My first visit with my neurologist i mentioned the faciculations and asked what may cause them. He slowly looked away from the computer (which I heard him refer to as a machine) he was busy hunting and pecking on, looking over his glasses and through his eyebrows he said "where did you learn that fancy word?"

So... what did he/she say after that?

"They are caused by stress"
 

KimT

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First, I'm so sorry you don't have access to quality health care. I'm ashamed of what our Country's health care has become. It's not right that I can get an MRI scheduled within two days and you cannot get one at all.

I see you're in North Carolina. Why not write a letter to Richard Bedlack at Duke describing your situation and see if someone on his staff can find you some kind of help. Also, you can start a Go Fund Me account and get some money for medical insurance. I'd advise to use the donated money to get a policy rather than to pay for testing.

How old are you?

I would write letters to local papers and call local radio stations. Sometimes, stories such a yours get media attention.

Meanwhile, eat right, stay hydrated, try to reduce stress by getting enough sleep and exercise. Keep doing gentle stretches and you might want to stay away from all forms of caffeine.
 

DeOly

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I'm 47. I know, I need to reach out, try some begging, but that not only takes dignity of takes a lot of energy. But hey, maybe that's it. I have thought about buying a one way ticket to Finland and when I land request and request asylum on grounds of fear for my life. I believe Health care is human right in Finland. Wouldn't that be embarrassing for USA.
I,m in a pickle, even if I could get into chapel hill there is no way I could get there. I did call to see if they would be willing to do appointment via Skype, since this seems to be a new trend in health care, and a simple good idea, but some things slow to change. "Science changes with funerals" hopefully not mine,ha. Funny you mention coffee, I'm originally from the Great Northwest, we put down coffee by the pot, but today I can barely finish a cup, I guess your body knows. That stretching is tricky, I have to be extremely careful not to injure my back muscles. Maybe that's why I drink less coffee, fear the weight of mug will pull my back!
Cheers
Thanks for kind words
 

lgelb

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Whatever your source of funds for care, you have the right to the EMG report. Just go to the Radiology or Medical Records department and sign the form. Then post it here, and we can be more helpful.

Having worked at "non-profit entities that serve the poor," I can assure you that precisely because of the politics/PR involved, if not professional ethics, there is no institution-wide preconception that "anything goes." Again, you always have the right to file a grievance through the appropriate department such as Patient Advocacy or a consumer ombudsman, if you feel your care is substandard. Sometimes a simple, concise, dignified letter restating the indication for the MRI, with a copy of the EMG report attached and the order from the local neuro, can work wonders.

Best,
Laurie
 

DeOly

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I started this thread with the EMG. That's really why I'm reaching out. I was hoping to get some advice/info from the patient side from people who have been to a few rodeos.
Strangely the Clinic was unaware of hipp a law, but after 2 months i did receive my records. I ha nd delivered the neur o report and EMG. Trust me, I'm trying to do everything to make it easier for them and me.
No, I don't believe it's industry wide, but certainly there are some bad apples. My experience has been horrific, and these few stories i have shared are barely scratching the surface.
But I do stay as positive as possible, it is what it is.I'm reaching out for alternative help by experienced people from another view point. As many people know being undiagnosed leaves you unable for assistance. The snail pace at which my health care is moving is slower then the progression of my issues.
I did call the ombudsman, but they said they did not handle these issues. If you have any other ideas where I could reach out that would be appreciated.
It's about patience, if the next few months don't move forward then I will look for assistance regarding sub standard care. Remember though I was just told by Clinic RN i had no Right to health care. I was shocked, and not quit sure how to take that.
Thanks for responding
Take a look at that EM G if you have the time
 

lgelb

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Um, no, you started with an EMG summary snippet. I was looking for the part with numbers.
 

DeOly

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Sorry for quality. If unreadable or wrong page let me know
Thanks
 

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KarenNWendyn

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DeOly, was there a written conclusion or interpretation at the bottom of the EMG report? Those are very helpful to us.

I’m sorry the nurse said you do not have the right to healthcare. That must have felt worse than a punch in the gut. Unfortunately in our country, healthcare is treated like a privilege rather than a right. One has to be very creative about accessing free clinics, sliding pay scales, and programs with grants to help the indigent. It can be done, sometimes, but many fall through the cracks, and the care is not always optimal. I’m sorry for that.

I wish you the best as you seek answers.
 

DeOly

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Like your icon, I have a Welsh terrier(terror).
It was labeled as results.
I'm obviously hoping for disc issues. MRI of lumber shows herniated discs, which I can feel, but neurologist said this was not causing what was on EMG.
This is my concern because I can feel the disc issues in lower back but I do not feel pain in cervical area. Neurologist said that whatever is causing issues is from cervical or north.
 
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