Is this normal?

o0talula0o

o0talula0o

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Okay so I honestly don't know a lot of people with serious medical issues in my personal life, and if I do, they haven't readily told me. But I'm having a lot of issues with the system and I figured I'd just post it here in hopes that someone can relate and possibly give me any advice to help me navigate this. Because I'm pretty fed up. Anyway here goes...

So I've had a preexisting condition of Hydrocephalus since birth. But it hasn't been an issue until about 3 years ago. But since the whole start of this process of fixing it, it's been nothing but issue after issue.

At first I was dealing with doctors that wouldn't listen to me that something wasn't right. It's not like I was yelling or crying, or being unruly, but instead of investigating my preexisting condition I was stuck on multiple anxiety medications and was told that I needed counseling on top of my medication. It got to the point that I was scared to even set foot in the hospital because I was scared they would pop me an ativan, refer me to a psychologist, and send me on my way. Finally after about three months of this I lost function of my left side and my friend practically dragged me against my will to the ER.

Well since then, I did get the care I needed, but it seems that things are still ongoing. Because of issues with my insurance, my neurologist couldn't refer me to the right location to get my tests done on my current shunt (the tube that drains the excess spinal fluid from my brain). They decided to get in touch with my primary care doctor to get a referral, but I was basically the one stuck in the middle... and when one of the nurse staff finally contacted me about it, she told me that my primary care doctor didn't feel comfortable getting involved in such, and sent me back to my neurologist. I questioned why they wouldn't just get in contact with my neurologist, and why tell me since I didn't know what to do, and the nurse staff wasn't really helping the situation. When I said this, she studdered, and I finally just hung up on her.

I called my neurologist, and they contacted my primary care physician again. They finally agreed to order the tests. But it's been three weeks. Through all of this, they were faxed my insurance information which was never updated. I had the insurance company fax the information for a second time. ( to top it off, my insurance company hasn't sent my cards... I've been trying for three months) How can they refer me if they don't have my insurance information to make sure it's covered. I found this out by scheduling a routine appointment. Had I not done that, I would have never known because last week the nurse told me everything was fine and that I just needed to wait. This whole process for this appointment started in December. It's now almost March.

I can barely walk, my vision is blurred, sometimes my muscles in my limbs spasm like crazy for hours, and I get headaches that would probably freak out the average person. (No I don't need to go to the ER, I am aware of my condition and when I need serious medical attention) but I have the capability to be healthy. So why does this seem so ridiculous? I am not a difficult person, and I can tolerate a lot. But I don't understand this. Is this normal to go through so many problems with the medical system? Am I doing something wrong, because it seems no matter what facility I go to, they take forever and they aren't on top of things. To me that is kinda scary. Please if anyone has any advice or maybe something to relate, I'd appreciate it. Cuz right now I feel so frustrated and alone.
 
I'm sorry that you're experiencing so much frustration with the medical system. I don't know if it's "normal" or not but I hope you get some satisfaction soon.
 
o0talula0o said:
Okay so I honestly don't know a lot of people with serious medical issues in my personal life, and if I do, they haven't readily told me. But I'm having a lot of issues with the system and I figured I'd just post it here in hopes that someone can relate and possibly give me any advice to help me navigate this. Because I'm pretty fed up. Anyway here goes...

So I've had a preexisting condition of Hydrocephalus since birth. But it hasn't been an issue until about 3 years ago. But since the whole start of this process of fixing it, it's been nothing but issue after issue.

At first I was dealing with doctors that wouldn't listen to me that something wasn't right. It's not like I was yelling or crying, or being unruly, but instead of investigating my preexisting condition I was stuck on multiple anxiety medications and was told that I needed counseling on top of my medication. It got to the point that I was scared to even set foot in the hospital because I was scared they would pop me an ativan, refer me to a psychologist, and send me on my way. Finally after about three months of this I lost function of my left side and my friend practically dragged me against my will to the ER.

Well since then, I did get the care I needed, but it seems that things are still ongoing. Because of issues with my insurance, my neurologist couldn't refer me to the right location to get my tests done on my current shunt (the tube that drains the excess spinal fluid from my brain). They decided to get in touch with my primary care doctor to get a referral, but I was basically the one stuck in the middle... and when one of the nurse staff finally contacted me about it, she told me that my primary care doctor didn't feel comfortable getting involved in such, and sent me back to my neurologist. I questioned why they wouldn't just get in contact with my neurologist, and why tell me since I didn't know what to do, and the nurse staff wasn't really helping the situation. When I said this, she studdered, and I finally just hung up on her.

I called my neurologist, and they contacted my primary care physician again. They finally agreed to order the tests. But it's been three weeks. Through all of this, they were faxed my insurance information which was never updated. I had the insurance company fax the information for a second time. ( to top it off, my insurance company hasn't sent my cards... I've been trying for three months) How can they refer me if they don't have my insurance information to make sure it's covered. I found this out by scheduling a routine appointment. Had I not done that, I would have never known because last week the nurse told me everything was fine and that I just needed to wait. This whole process for this appointment started in December. It's now almost March.

I can barely walk, my vision is blurred, sometimes my muscles in my limbs spasm like crazy for hours, and I get headaches that would probably freak out the average person. (No I don't need to go to the ER, I am aware of my condition and when I need serious medical attention) but I have the capability to be healthy. So why does this seem so ridiculous? I am not a difficult person, and I can tolerate a lot. But I don't understand this. Is this normal to go through so many problems with the medical system? Am I doing something wrong, because it seems no matter what facility I go to, they take forever and they aren't on top of things. To me that is kinda scary. Please if anyone has any advice or maybe something to relate, I'd appreciate it. Cuz right now I feel so frustrated and alone.
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To clear up the problems with your insurance company, get in touch with your state's insurance commissioner. There should be contact info through Google under Washington Insurance Commissioner, and tell them the story of your problem. Or maybe you also need an health care advocate, not sure how to contact that program. At any rate, best of luck with all that!
 
Health care advocate? Does that mean they speak for you? I'm assuming that is what it means. As it stands, I have the energy and mental stability to make my own healthcare decisions. But if that is what it is, maybe it won't be such a bad idea to look into because this is exhausting.

Yesterday I had another mix up with the appointment I've been waiting for. My primary care office updated my records and left messages for one of their staff to call me... but they never did. And when I finally followed the instructions that were left for me to call the other office... they had no knowledge of this even happening.

It's left me to wonder if I should start yelling to get what I need. But then again... they might just tell me I need mental help.

Maybe I should have someone step in and speak for me.
 
about muscle spasms in your limbs - is it in your legs? perhaps it's restless leg syndrome?
I am sorry you experience so many health issues, and on top of that, problems with medical care. I agree having someone who could speak for you is a good idea. I hope you'll find somebody.

Fuzzy
 
Audiofuzzy, thanks for the concern. That's really sweet of you. But no, there is a formal diagnosis. The spasms are a symptom of my condition. And I tend to get the spasms all over in random places of my body. Basically what is happening is...

I had a shunt series scan done in December at the ER after I was complaining of a strange headache. This means that they did a series of scans from my head to my abdomen which is the length of the tube. After scanning this, they found that there were sections of the tube that were not showing up in the scan.

The ER doctors wanted to set me up with a neurosurgeon right away but since it wasn't a life threatening emergency I didn't feel comfortable with them passing me off to one of their people without consulting my neurologist. Cutting into someone's head is a kind of a big deal.

So I got in contact with my neurologist and he wanted to know exactly what was going on with the tube, so he wanted to set me up with someone to insert some dye into the tube to see exactly what the tube is doing. But because of issues with my insurance, he had to pass the assignment off to my primary care office to help obtain the results. And dealing with them has been a nightmare.

All of my symptoms are classic symptoms of my condition, nothing new. But just like my neurologist, I want to know exactly why these things are happening, before I let someone cut me up. :)
 
it when read things like this i thankful i in uk have nhs..it appualing how they treating you and would thought they treat you as urgent,i hope you get decent care soon as possible
 
Yeah I'm kinda wondering if Obamacare is responsible for this. I'm not entirely positive, but it has been in the back of my mind.

It just makes things challenging for me, since I am technically single, my parents are most certainly not rich, and I've been independent since 18. When I am healthy, I make more than enough earnings above the poverty level, so applying for any sort of financial assistance is extremely difficult. So I'm left to figure it out for myself, and when they aren't prompt, it continues to eat into my finances.

Right now as it stands I should probably be at home, but I am working for about 4 hours every day so I can continue to make ends meet while this whole thing gets sorted out.
 
o0talula0o said:
Yeah I'm kinda wondering if Obamacare is responsible for this. I'm not entirely positive, but it has been in the back of my mind.

It just makes things challenging for me, since I am technically single, my parents are most certainly not rich, and I've been independent since 18. When I am healthy, I make more than enough earnings above the poverty level, so applying for any sort of financial assistance is extremely difficult. So I'm left to figure it out for myself, and when they aren't prompt, it continues to eat into my finances.

Right now as it stands I should probably be at home, but I am working for about 4 hours every day so I can continue to make ends meet while this whole thing gets sorted out.
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no it has nothing to do with obamacare. what it sounds like your health insurance is simply sloppy. perhaps you should consider changing to a different one.

who is your insurance carrier, if you don't mind my asking.
 
I hope everything get resolved in your situation. Having to deal with this medical situation can be a nightmare. I hope they can make corrections and get you to be healthy once again and be happy with yourself. :)
 
Ambetter Balanced Care through Coordinated Care, research it if you like. I'm curious.
 
my mum in hospital and I been told they do Liverpool pathway States do aswel...I will fight like hell that don't happen.
do American doctors do as relatives ask if say don't want Liverpool pathway do you have chose
 
caz12 said:
my mum in hospital and I been told they do Liverpool pathway States do aswel...I will fight like hell that don't happen.
do American doctors do as relatives ask if say don't want Liverpool pathway do you have chose
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It seems that Liverpool Pathway is what Americans would call hospice care.

Unless the British system is quite different from the American one, I'm not sure what your objection is.

What part of their services do you object to?
 
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