Don’t worry, I still hate doctors. I just realized I hadn’t written anything about my medical stuff on here in a long time.
I just want to see NEW doctors. I just want another round of talking to people. I will be patient with this, but eventually.
Last time I went to see the neurologist, who is nice enough but tired of working with me (seriously, I just NEED more tests done and they just don’t even want me there), I started thinking about how far back this goes. Like the nerve entrapment pain and numbness in so many areas really disabled me a year and a half ago, but prior to that, I had this same burning feeling all through my legs for probably2-3 additional years, and some much more minor numbness issues (like my feet going numb when working out) and some problems with my hands when writing too much or at work in the lab with too much repetitive pipetting (yes, there are such thing as pipetting overuse injuries, people always make fun of that 😉 ). So I am seriously thinking back 4 solid years of this in a minor way, a year and a half in a major way.
Anyway, I started thinking again about all of this recently. I think because I have started experiencing some so far minor trigeminal neuralgia-type pain in my face that I have never had before. Trigeminal neuralgia can be VERY severe and mine is not (knock on wood), but the pain and sensitivity is along the path of the trigeminal nerve so that is why I reference that. I would not necessarily diagnose it as the traditional form of that condition at all, just saying it relates.
So I am just wondering about more tests and treatments! I have a sort of peace with the fact that many, many medical conditions are never explained. But I just also feel like every 6 months you have to go back and TRY!
What do I want to try? Okay, still have to try acupuncture. But also, just several conditions I WANT to ask about but never do. I want to see a rheumatologist again, another neurologist. So far the consensus is that I have Fibromyalgia secondary to some nerve disorder. Well, I would like to TALK to someone who is really familiar with fibro, just talk. I would like to get tested for Lyme and a bunch of other things. I would like to get another Celiac’s test. MY MRI for MS was negative (of my head) but I have so many symptoms of it, I think it would be wise to do a spinal tap as well. Etc.
- In a large group of patients who present with clinical findings (history and physical) suggestive of MS, the only MRI that is ordered in of the brain. If the doctor fails to see lesions in the brain and then dismisses the patient as definitely not having MS, they are failing at their job. If the brain MRI is negative or equivocal, and the doctor should still suspect MS, an MRI of the spine should be done. This is the recommendation of the Consortium of MS Centers. Many clinics, though, do the spine routinely if MS is being considered. Yet over and over we have to tell people to make sure they get the spinal cord (cervical and thoracic) imaged. A large percentage of patients will have lesions in both places. If the diagnosis can’t be made from the brain alone, sometimes the information from the spine will clinch it (as it did for me.) While only a small minority of patients will have lesions in the spinal cord only, they do exist. The lesions can’t be seen if nobody looks for them.
I really liked my old neurologist before we switched insurance a year ago. I am under my parents insurance, and last year we switched from a PPO plan to an HMO plan with another carrier. While the HMO is MUCH cheaper for my medication, I feel the quality of care was far superior with a PPO and hated switching from those doctors. They both have their strong points.
Speaking of insurance, I am so worried about what I am going to do this summer about it!
I will be 26 years old this summer. I am unemployed. When I turn 26, unless I can figure something out for disability-related cases, I will be terminated from my parents insurance (thank goodness for the federal law that gave me one more year beyond Colorado’s law of 25)! This is really serious. I think it is a serious thing for EVERYONE to have health insurance, and especially for someone with a chronic medical condition (whose only helpful medicine costs $500+ a month out-of-pocket). So I have to discuss this with my mom and figure it out. I guess my options are: pay for my own coverage (without a job), find a job with benefits by then, go back to school and get student health insurance, or get married! I will be in California by then, I am sure, and B will for sure. In Colorado, I am pretty sure we could fill out common-law paperwork, but they do recognize common-law marriage AT ALL in the state of California so that isn’t an option. Hoping to figure this out.