This is where I am today. Back when I was in the hospital for the complications with shingles, I saw a neurologist. Since they specialize in nerves, and the disease I had dealt with nerves, that made sense. I told my husband at the time, though, that I felt he was rushed. He didn't really listen to my concerns; he kind of just told me how it was and left.
Two weeks after I left the hospital, with a diagnosis of nerve damage due to the shingles, I followed up with the neurologist. Once again he seemed like what I had to say didn't much matter. He was confident that my nerve damage was typical and sent me away saying that it takes three to six months to recover, and it could take up to a year. If the pain was still there in December, we would talk about the possibility of this being a permanent condition.
In the hospital, the doctor prescribed Lyrica for my nerves. It is an antsiezure medication that is supposed to stop the tremors I had as well as calm the nerves from overreacting. It works. It works well, but it certainly is not the perfect medication. I still have pain in my feet and daily headaches. BUT, if it can stop my body from moving without my consent, it is worth taking.
The problem- this medication is costing me $300 per month. I do not have medical insurance, and the Arizona state insurance is dragging their feet. It has been more than two months since my emergency application was put in for medical coverage, and I have still not heard back from them. For the time being, I am covering all of my follow up visits and medications. I am also starting to field phone calls from the hospital and ambulance collections departments. This added stress is certainly not helping matters any, but the medical bills will get paid when I can. It was the hospital collection department that checked on Monday and found that my insurance application is still in pending status. Grrrrrr..... Ah, I digress. The insurance is a whole different issue.
The Pfizer corporation, the manufacturers of Lyrica, have generously set up a patient assistance program. If one is unable to afford the medication, like me, the doctor can fill out a form that proves he or she has prescribed Lyrica and prove that it is needed. My doctor filled this out, and I got the forms to send in yesterday.
Here's the part that made me blow my top. The doctor included his notes from the hospital as well as from the follow up visit. There is not one part of the description that is accurate. He said that I describe my feet as tingling and like I am walking on cotton balls. Not once during this ridiculous experience have I felt like I was walking on cotton balls. I could only DREAM of my pain being described as tingling. I actually feel like a knife is being put through the bottom of my feet with every step I take. I feel like there are boards stuck to my feet when the pain gets to be too much, causing me to walk like a duck and not bend my feet. This has ALWAYS been the description of my pain, and I don't know how anyone would get COTTON BALLS out of that!
The report says that I deny changes in vision (really? Is that why I haven't driven a car by myself since April 1st and have only been able to drive three times with Daniel in the car?) and that I have no trouble with speech (who was this doctor talking to? I couldn't get three words out without slowing down to find one that had gotten lost in my brain. Maybe he thought I was always that stupid?) even though I was, at that point, so nervous talking that I would break out in a sweat. It also said that I could walk with no assistance. I came into his office using a walker for crying out loud- one that HE prescribed for me upon leaving the hospital!
The one that really gets me? The report says that I am "able to do [her] daily activities with no problem." Are you freaking kidding me? Seriously? Does this guy think I ENJOY sitting on my couch for 13 weeks now, doing absolutely nothing? Every time I think about this I get so sick I could throw up. I am extremely agitated. I feel lost; there is nowhere to turn to get out of this mess.
Here's the official diagnosis:
Headache- General
Herpes Zoster (shingles) with other complications
Paresthesia is tingling in the extremities due to nerve compression or damage. I don't HAVE tingling! I have PAIN, serious stinking PAIN that brings tears to my eyes while I walk through the grocery store.
So, I called the doctor yesterday to find out what this report is all about. Guess what? He's on vacation! He'll be gone from the office until the first of August. I can't see the other doctor in the practice because their rules say I have to have permission of the doctor to switch. Oh, have I mentioned that I don't have health insurance? There is only one other doctor in the entire Phoenix area who will see a patient without being covered. So, I will have to call my general practitioner to find his name and see if we can start all over. I don't want to do that, but I NEED to be seen for the actual symptoms I have. I am terribly afraid that I've been treated for the wrong disorder for more than three months. Excuse me while I go beat my head against the wall.
So, that's my story. I don't know how to get a doctor to listen to what is ACTUALLY wrong with me! My stress level is above my head. I am drowning. This strong woman (according to my husband and you, my wonderful readers, friend, and family) is losing her grip quickly. I am so afraid, angry, and I want to give up. I want to throw my hands in the air and just crawl into a hole. I'm trying not to think about this, yet I need to get the issue handled. I'm off to occupy myself and to try not to scream.
UPDATE: Thank you, Robin, for the name of a neurologist who is willing to see me without insurance. I have an appointment on July 25th. It's another month to wait, but it gives me hope that someone WILL listen to my symptoms. The final outcome may be the same, but it is comforting to know I will be getting a second opinion.
14 comments:
Try a new doctor. Kari Patterson, MD.
Karen,
with the hospital bills you want to talk to someone in billing and request a paydown---that you will pay something but because of not having health coverage you would like to talk to someone about assistance--sometimes they will decrease the costs based upon what you can pay--is the hospital a state run facility?/?. The hospital may have a customer service or center of excellence that deals with complaints and resolution.....I'd also call there. As far as the doc...call your internist----request to speak to a nurse when you call---not the front line people....tell the nurse specifics about your pain, your issues with your needs not being addressed and ask for advice about how to get treatment in a timely fashion. Ask if your doctor can call and get the other neurologist to work you in.....a call from a colleague often works wonders....if your symptoms get worse or the pain is not improving...there is always going to the ER...there at least you'll get connected to someone......
email me on BF if there is anything I can help you with.....Pam
Are you offering Kari? I'm being serious. I have run into the problem that no neurologist will see me because I don't have insurance. I don't know where to turn.
Robin, thank you! I called, and she DOES take self-pay patients. Now I just have to come up with the money to see her. It's quite a bit more than the other doctor, but I REALLY appreciate the referral!
Pam,
Thank you for your advice. Fortunately the hospital has already given us a discounted rate- 75% actually. It's a heck of a nice thing to do. Unfortunately even with that discount we are looking at $6000, and I haven't even gotten a bill from when I was admitted. I'm not worrying about that stuff right now. Honestly, I'll deal with the collection calls as they come and make small payments as we can. Right now I just want to focus on getting better. Unfortunately my regular doctor doesn't seem to have any pull. This is definitely not an emergency room situation since I've been dealing with it for 3 months now, but it's frustrating to find out that I've been treated for the wrong symptoms since the hospital. I just want to get better!
File a suit against the doctor. That will get his attention.
And by the way... Who came up with this stupid expression of walking on cotton balls?!?!?!?!?! I bet it doesn't hurt at all! I bet walking on cotton balls feels quite pleasant! Gees... Anyway, you may want to consider doing something with that bogus diagnosis you got from this joke of a doctor and here is why. If, for whatever reason, you will need to apply for social security disability or something like that, that diagnosis can bite you in the ass. You need to get that doctor to change it when he comes back from vacation. Threaten to sue him, even, if that what it takes cause his carelessness can totally bite you in the butt later. Just thought you should know... My mom had the same thing happen to her.
I hear you, Mira. Those were all my same thoughts, too. I was especially concerned about him saying that I could participate in my daily activities. My life is NOTHING like it was on March 22. March 23rd was a changing point, and I have not had a "normal" life since then.
I agree with you about the cotton balls, too. That would be very nice, wouldn't it? I thought the same thing when I read that. Who would complain about that?
I will be seeing the 2nd neurologist next month, and once I am safely in her care I will figure out how to handle the first one. The problem is that I can't burn bridges too fast because of my insurance situation.
I'm still so frustrated I can't see straight. Oh, wait... I couldn't do that before anyway. Ha, ha, ha. Okay, seriously, I need to calm down.
I can't believe that your doctor went on vacation for 6 weeks and didn't leave anyone to cover his patients. Very unethical.
And to imgine that there are legislators in your country who insist that you don't need universal health coverage for all.
Good luck with the new doctor.
They're supposed to have patients queries routed to someone else! All healthcare professionals have people covering for them when they leave. How very callous!
He's mixed up files. It seems likely. I remember that when I worked in a facility, doctors and others would very often forget to put the patients' name on top of the form. This led to enormous confusion just before health department visits which was the time that they would carefully go over files. There is nothing similar between walking on cotton balls and knife twisting in the foot. Is there someone you could approach, for insurance purposes, and ask them to find information with your symptoms? You're going to have to say that the symptoms listed do not even remotely mirror your own.
I get upset just thinking about some of the stuff I've seen. Cotton balls indeed!
Also, Karen, you can ask to view your original medical records. Just to put things together. They are required to show you the papers if you ask. It would help if you have the old records (no matter how distorted) when you go to see the new doctor.
Hugs and prayers, Anne
Thank you Heather and Anne. I talked to the doctor on the phone today. He was very set that he knows exactly what my issues are and that he wrote what he saw. Apparently I am going out of my mind. That's what I felt he was saying, anyway. I will be hanging in there until we see the new doctor, but it is going to be a long wait. In the meantime I will also be putting together what I can to show the new doctor. I've done a lot of blogging all along, so even that information should help. This situation has really gotten to me.
I hope the new doc can help you. The old doctor doesn't sound right. Can't go imagining that people are narrating such opposite symptoms. Take care and hope that you have some answers.
Thanks Anne. I hope she can help, too. We'll see what happens. It's going to be torture to wait another month to get in, but what's another few weeks after the three months I've already spent trying to get well? I'm excited but trying not to get my hopes up. The reality is that I most likely have the nerve damage I thought I did, and nothing may change.
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