The lab results are in, and “everything is fine, except you’re vitamin D deficient.”
Why am I not surprised? Haha. Eek. So now I do have this question: if I have Raynaud’s phenomenon, and hypermobility joint syndrome, and all the symptoms of autoimmune conditions like lupus, but no evidence of lupus or rheumatoid in my blood work, this makes me a zebra, right?
Actually my question is whether being treated with an anti-malarial like Plaquenil, even without evidence of an autoimmune disorder in my blood work, will do anything to help me, or does it have the potential to worsen my symptoms? He still wants to start me on that medication. Ever since trying the soft cervical collar (which was scary and I thought I was going to die! but my occipital headaches have since gone away almost completely!) I’m a little wary of just jumping into any sort of treatment. Especially treatment by a doctor with no background in treating Ehler’s-Danlos or any other collagen disorders. (Okay so I really mean especially by a doctor whose only knowledge OF Ehlers-Danlos came from a 5 minute scanning of the wikipedia page on it – which I’ve read and isn’t exactly up to date.)
I’m sure a lot of these questions get asked in here, and I’m sure the information is on here if I dig around a little and look for it. I wanted to post an update and I do have a lot more research to do in the month before my next appointment with this doctor. I was just hoping to get some leads and pointed in the right direction as far as what treatments I should be talking to my doctor about and what my options are as far as anti-malarials and autoimmune medications.
I know that physical therapy to strengthen the muscles supporting my joints is a big part of treatment, but I do have to go get an MRI for my sciatic nerve pain (and toe numbness) before I let any physical therapist start fiddling with my body.
And I know the best thing for me to do would be to find a doctor in my area that’s at least familiar with Ehler’s-Danlos or even just collagen disorders, but believe me that was my first priority and the nearest one is over 600 miles away, so that option isn’t really an option for me unfortunately. I plan on printing out the research papers I’ve read and highlighting parts, along with possibly writing a paper on myself and my symptoms and why I believe I have Ehlers-Danlos, and then presenting my rheumatologist with all this information and scientific evidence and trying to (gently) let him know that this is something he might want to learn about.
If he continues to keep a closed-minded “I know it’s not that,” attitude, then I will have to fire him and find myself a different doctor with a better attitude.
Again, any help, tips, pointers in the right direction, or answers about what autoimmune medications would potentially do (help or hinder) would be greatly appreciated!
Keep on keeping on, everyone.