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Mar 26, 2016 10:05 AM

I am new here and would love some input from anyone who might have it.
I had my daughter December 7, 2012 and started having joint and muscle pain 6-7 months later. It started with shoulder and hand pain. Because of the area I lived at the time and because of insurance stuff it took a couple months before I got into a rheumatologist(& had to drive 3 hrs to go there). I was tested for lupus, RA, tick borne dz panel, urinalysis and basic cbc/ chemistry. The only thing that came back abnormal was that my vitamin D level was slightly low. He had Mr try a short course of steroids and boy did it make me feel great! At that point the pain had progressed to all over my body so I hadn't felt better since I was a teenager. Of course I wasn't going to stay on steroids. He then started me on Plaquenil and gradually got me up to 200mg twice daily which is a fairly low dose. It helped quite a bit but didn't take all the pain away. My rheumatologist was content to say I have "myalgia" & "arthralgia" but never really give me a diagnosis although he spoke to me about fibromyalgia. I continued to see this Dr and voiced concerns that I still had times that my pain got worse and almost unbearable. I also voiced concern that my urine smells odd after physical activity. He said since nothing showed on the previous urinalysis, he wasn't concerned. Fast forward just over 2 yrs and we have moved t of Virginia due to my husband's military transfer. I FINALLY got into a rheumatologist after a year of being here. He did the same types of blood work and urinalysis and it came back the same; only abnormality was low vitamin D. He wanted me to incorporate exercise into my routine (along with taking care of 2 households, 3 cats, 2 dogs, and a 3 yrs old while working nearly full-time by myself all while husband is deployed. I work as a Licensed Veterinary Technician and one day myself and a couple other co-workers had to go running after a couple loose dogs. I ran full force about the distance of a football field. Again I had the weird smelling urine after that and I was terribly sore for about 5 days after and sore in places that didn't make sense like my biceps. I communicated this to my rheumatologist and he told me to stop the Plaquenil and to go see a neurologist. Unbeknownst to my my PCP had left so in order to get a referral to the neurologist I had to have a "meet & greet" with my new PCP. My new PCP was really nice as ND listened to me really well. She wasn't quite clear on why the rheumatologist wanted me to go to the neurologist so from the exam room she called the rheumatologist and spoke to him and the agreed on 2 new medications to replace the Plaquenil.
I went to the neurologist and again he listened very well & gave me a very extensive neuro exam. The only thing he said was a little off on was on a test where he asked me to name as many words as I could that started with the letter F in a minute but it couldn't be a proper noun or a number or repeat anything with the same root word. He said I did well in the first 30 seconds but then I slowed down a lot which indicated mental fatigue. I recently found out that I have a relative with Pompe dz. I mentioned this to the neurologist and he just sort of brushed it off. He did say he wants to do an EMG test on me. Upon the urging of my cousin who's daughter is the one who has Pompe dz, I sent a request to my PCP to see if she would do the free testing for Pompe through Duke University or if she would refer me to a geneticist to do it. I got a message back denying my requests because she didn't think it was necessary. So now I'm stuck with Dr's telling me I have unspecified muscle & joint pain & to continue with medications that aren't really working, without pursuing all other possibilities. My husband and I have contemplated driving to Duke as it is only just over 3 hrs drive but I'm concerned about the costs that may be incurred. Does anyone have any insight in how to get my Dr's to at least try to check other avenues for answers to my pain instead of just saying I have pain and throwing drugs at me that don't work?
Sorry this is so long. I just don't know what to do... thanks in advance for any help.

Mar 26, 2016 12:06 PM

As someone going through the diagnostic stage right now, I think the biggest thing is to advocate for yourself. I have a great PCP and she told me to track my symptoms. As I tracked my symptoms she was able to get a better idea of what is going on. She's done a lot of tests. The first neurologist I saw told me I have chronic migraines. The second neurologist I saw specializes in neuropathy. He said I have small fiber neuropathy and sent her even more tests to do to determine the underlying cause. However sometimes it can be idiopathic (without a known cause). If you don't have answers, ask your PCP what the next steps are. I'm sure some of the others will have more advice for you as well. Welcome!

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