I'm trying to get a diagnosis and keep hitting roadblocks!

[Nik2881]

Hi there:) I am having an awful time right now and I don't know what to do. A little about what's going on...3 years ago, I started having horrific headaches. They started out small and periodic, but quickly grew into a 24/7 problem. I found myself taking loads of over the counter drugs to try and combat them, but nothing ever worked. I have a full time factory job and 3 kids, so I couldn't be out of commission so I decided to go to the doctor. Now, I've had a migraine before. I know what they feel like. These are NOT migraine headaches. But, my doctor kept insisting that they were migraines and prescribed me migraine medication that did nothing but give me nasty side effects. I continued to go back, every couple weeks, pushing for an answer. I was prescribed narcotics. They didn't help either. Then I was prescribed anti convulsants. All they did was make me woozy and sleepy. I nearly lost my job from not being able to stay awake. Forget that. I quit taking them. I also started noticing other problems. I was having dizziness, weakness in my arms and hands, also tingling. I also tried to tell him my headaches were coming from my neck, NOT my head. The headache intensified if coughed or laughed. When I would get a cold and started coughing and sneezing, forget it! The headaches were unbearable! I went through this for 2 years. Soon, more symptoms started arising. I started having chest pain and heart palpitations, along with tachycardia. He put me on a beta blocker and did and EKG and blood work. My heart is perfect. Again, no answers. I also started having problems with my hands turning blue and white and going numb when they're cold. Even if I hold a cold beverage. I cut out sugar and caffeine from my diet, as well as gluten and that didn't help either. Finally, at the end of those 2 years, my dad, whom I love dearly, was diagnosed with lung cancer. I was crushed. Of course I sobbed, and POW! The headache! My doctor then decided that my headaches were due to stress of my dads diagnosis. It was at that point that I sought out a new doctor. I was appalled by that statement. I found an amazing doctor! She listened to me and took tons of notes. She asked me loads of questions. She actually felt my neck and shoulders. She touched me, something my other doctor never did. She told me that she suspects I have chiari malformation and ordered an MRI. Well, I find out today that my insurance company denied it. My out of pocket cost is met for the year as I had foot surgery on both feet this summer. I was so happy to be on the road to a diagnosis and start feeling better. Now I feel defeated. I don't know what to do. I drive 30 minutes to work everyday at 5 am and it's getting scary with the dizziness and pins and needles in my hands and arms. I'm struggling to cope with doing my job everyday. I've been dealing with this for 3 years now and it's only getting worse. If I lose my job, I'll lose my insurance...and my house. I NEED to figure this out! Has anyone else ever ran into a problem with their insurance company? I called them today and they said I didn't meet the criteria for the approval and that was all she would tell me. I would think that 3 years of SEVERAL appointments and lists upon lists of medications would be enough. Ugh

[selmaS]

  LOL...yup....slow and steady with a little patience on the side....

When I went to a Chiari specialist none of them worked with INS so you had to pay out of pocket in cash or check to even be seen.....the surgery was covered but not the initial visit....can't remember the exact amount but I think it was 500.....so I do understand the financial end of all of this...

Driving is scary.....I no longer drive due to issues with vision disturbances and depth perception....I also no longer work....I used up all my FMLA time and lost my job....not being able to drive has be one reason to not get another one.....so I am trying to find ways to earn an income from home.

[selmaS]

  Hi and welcome to the Chiari forum.

When does your new year with your INS start again?......I had a similar issue with INS and just getting appointments with Chiari specialists can take time so I was lucky in that it worked out that I was at a new year of deductibles.

I know it seems like you can not wait longer to get answers or relief...but you can....and you will....one thing we all learn is patience as we hurry and wait for more testing and answers....so waiting on an INS company is not too much more.

Once I had my MRI and a confirmed Chiari DX I went another year b4 I get into a true Chiari specialist. I was going to Drs since I was in high school with symptoms when I was very young...and my Dx was at age 48.

So I know how you feel, I also had to work...and I was doing 70 plus work weeks....somehow I got thru it....hang in there, you are not alone.

[Nik2881]

Thank you for the welcome:) It's all just so frustrating. Come January, I will have to meet my deductible and out of pocket costs for my insurance. Meeting all of that this year for my feet surgery was a nightmare. So much burden financially. These high deductibles are awful. My doctor is trying again for the MRI. It is being submitted again tomorrow. She told me that they are having an awful time getting patients pre-certified for tests. My husband told me to just do it without the insurance, that we would get through the bills. But the problem is that they want up front payment. I understand why, but that's just crazy. If I had that much money laying around I would be fixing my house! I'm just worried that I'm going to end up losing my job due my sickness. It's getting so hard to cope and function. Some days I can barely walk, let alone get out of bed. I wake up feeling like I was up all night drinking. I'm wobbly, can't walk straight and I walk into the walls. It lessens the longer I'm up, but it never goes away. Driving is terrifying. I guess all I can do is be a patient patient!