You will likely meet many, many healthcare providers in your search to determine what is wrong with you. And the odds are that you will kiss quite a few frogs, before you find your prince.
You will start with your primary care provider, if you are lucky. If you are not you will start your process in the ER, because you developed a severe headache, nausea and vomiting, visual disturbance. You will probably be diagnosed with "migraine" given some anti-nausea medication, an IV to re-hydrate you and maybe some pain medication. Then you will be sent on your way with a recommendation to follow up with your primary care doctor.
Here's what happened to me. I started out with headaches, head pressure and tremors. I had uncontrollable movements, could not walk in a straight line. I live in an area which has one of the highest incidence of Lyme Disease in the country. Approximately 50% of ticks tested here are positive. I was initially tested for Lyme Disease and was negative. However, 35% of people who have Lyme test negative so I was treated for Lyme Disease, but got progressively worse.
I was worked up for Parkinson's Disease because of the tremors and uncontrolled movements. I had a sleep study to rule out Sleep Apnea, or Periodic Limb Movement Disorder, because if the insomnia and fatigue. I was negative. I was sent to a Pulmonologist (lung doctor) and told that I should lose weight. I had to see an Endocrinologist, because there was a concern that this was a Metabolic Disorder. This was negative.
I finally had a Lumbar Puncture (spinal tap) because my symptoms progressed and became consistent with Meningitis. The test results were negative, but my head felt instantly better. My providers could not explain this. I went to have an MRI, which was completely normal. I then had a list of blood work done that cost in the thousands of dollars, and all came back negative.
I was finally referred to a Neurologist. This process took over a year. And I work in the healthcare field, so this should not have taken this long, in my opinion. My Neurologist ordered a repeat LP, with opening pressure. This came back elevated. And I was diagnosed with Pesudo Tumor Cerebri, also known as Benign Intercranial Hypertension.
I was started on Diamox, we will talk about treatments later. I saw a Neurosurgeon to talk about a shunt. This man did not believe that I had this condition, he also did not know very much about it. So I began the process all over again. Struggling to "prove" that I had this condition so that someone would help me. I finally gave up and decided that I was going to try to give the medication a little longer to see if it would work and have a spinal tap every once in a while to control the pressure.
Over two and a half years later, I finally met a Neurosurgeon who knew about my condition and how to treat it, and I will be having a VP shunt placed sometime in January.
My point here is, you will kiss a lot of frogs, but don't give up. Never stop advocating for your health, you may be the only one who will. You are the only one who knows how you feel. Do not allow yourself to be intimidated by providers who don't seem to believe you. Do not accept that there is nothing wrong with you. If you meet a provider that you are not comfortable with, find a new one. Get a second and a third opinion. This is your health, no one else's. You can feel better, and with the right amount of time and patience, you will find the healthcare provider who can help to make this possible.
You will start with your primary care provider, if you are lucky. If you are not you will start your process in the ER, because you developed a severe headache, nausea and vomiting, visual disturbance. You will probably be diagnosed with "migraine" given some anti-nausea medication, an IV to re-hydrate you and maybe some pain medication. Then you will be sent on your way with a recommendation to follow up with your primary care doctor.
Here's what happened to me. I started out with headaches, head pressure and tremors. I had uncontrollable movements, could not walk in a straight line. I live in an area which has one of the highest incidence of Lyme Disease in the country. Approximately 50% of ticks tested here are positive. I was initially tested for Lyme Disease and was negative. However, 35% of people who have Lyme test negative so I was treated for Lyme Disease, but got progressively worse.
I was worked up for Parkinson's Disease because of the tremors and uncontrolled movements. I had a sleep study to rule out Sleep Apnea, or Periodic Limb Movement Disorder, because if the insomnia and fatigue. I was negative. I was sent to a Pulmonologist (lung doctor) and told that I should lose weight. I had to see an Endocrinologist, because there was a concern that this was a Metabolic Disorder. This was negative.
I finally had a Lumbar Puncture (spinal tap) because my symptoms progressed and became consistent with Meningitis. The test results were negative, but my head felt instantly better. My providers could not explain this. I went to have an MRI, which was completely normal. I then had a list of blood work done that cost in the thousands of dollars, and all came back negative.
I was finally referred to a Neurologist. This process took over a year. And I work in the healthcare field, so this should not have taken this long, in my opinion. My Neurologist ordered a repeat LP, with opening pressure. This came back elevated. And I was diagnosed with Pesudo Tumor Cerebri, also known as Benign Intercranial Hypertension.
I was started on Diamox, we will talk about treatments later. I saw a Neurosurgeon to talk about a shunt. This man did not believe that I had this condition, he also did not know very much about it. So I began the process all over again. Struggling to "prove" that I had this condition so that someone would help me. I finally gave up and decided that I was going to try to give the medication a little longer to see if it would work and have a spinal tap every once in a while to control the pressure.
Over two and a half years later, I finally met a Neurosurgeon who knew about my condition and how to treat it, and I will be having a VP shunt placed sometime in January.
My point here is, you will kiss a lot of frogs, but don't give up. Never stop advocating for your health, you may be the only one who will. You are the only one who knows how you feel. Do not allow yourself to be intimidated by providers who don't seem to believe you. Do not accept that there is nothing wrong with you. If you meet a provider that you are not comfortable with, find a new one. Get a second and a third opinion. This is your health, no one else's. You can feel better, and with the right amount of time and patience, you will find the healthcare provider who can help to make this possible.