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What should I ask for?
After 3 years of being docterless, my former doctor (Dr Brent Goodman) has returned to my area and I have an appointment to see him in the coming months. At the time we had no definitive diagnosis although Sjogrens or sarcoidosis were the top suspects. I was and still am on LDN plus a ton of supplements. The next steps if and when the LDN was not enough was to try Plaquenil and then high dose steroids (1g/day). LDN hasn’t been enough unfortunately for a long time now.
Should I advocate for yet another round of testing to try and get a definitive diagnosis? If so, should I stop the LDN and supplements to get the best chance for something to show up? That scares the crap out of me. Should I just try and get the Plaquenil and see if the Sjogrens treatment helps? Any other suggestions?
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Hello,
I’m really sorry about what you’re going thru.
I would definitely connect with a doctor before stopping or starting anything. The effects can be very bad. Since our bodies react differently to different things even with having the same condition, I feel it’s very important not to be hasty and connect with your doctor, off course provided you have a good one.
I wish you the best.
Take care and have a serene rest of your week,
gus
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3 ReactionsHello Aaron @aaroncush, Sorry to hear that you are struggling and haven't had much success finding something that helps. I found one of your earlier posts that did a good job summarizing your journey. I wonder if it might be good to take a list something like what you have been through so that you can discuss what you have already been through to see if the doctor can come up with some additional testing that may help with a treatment. Here's the post you made back in Dec 2022 - https://connect.mayoclinic.org/comment/780532/. Not sure if you like to plan your conversations with your doctor but I have found on occasion that it has helped me. Here's some suggestions from the Patient Revolution site - https://www.patientrevolution.org/tools.
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4 ReactionsI just took the advice by people on Connect to see a podiatrist. I did that and told him all my symptoms, even though some are in my entire leg after anterior total hip in 2023. He is sending me for a new EMG as he seemed to not like the one done at another clinic. That guy was a freak, not doing the entire leg, couldn't get the machine to work and jumping around like a kangaroo. He actually examined my feet and calf, which gets terrible cramps. I'd suggest that route if you can. I didn't ask my doctor for a referral. I was able to schedule him online without a referral. Good luck.
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3 ReactionsI have had multiple EMGs done and am confident my issues are small fiber. I am currently doing PT on my affected side due to an injury and strength is not an issue. I hope you get some answers.
Thanks John - yeah definitely need to plan my visit. I am just conflicted on pushing for answers vs pushing for better quality of life - ideally I would like to thread the needle and do both. Dr. Goodman is no longer at Mayo so I suspect time with him will be more limited.
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1 ReactionAre the emg tests as painful as I've heard? I hesitate to have one done.
No, an EMG isn't painful - it's a series of small needle pricks which show how the the nerves react. It's worth doing it
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1 ReactionThe first EMG I had back in the early 90's was painful - I had to have a driver available for after the test as the clinic wouldn't let you drive after. Modern EMGs are not painful at all.
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1 ReactionI've had 3 EMGs performed over the last couple of years. I found each one to be extremely uncomfortable and painful. I do not look forward to needing a 4th.
That's what I thought. My doctor ordered one for me and I ended up canceling it. I had just gone through a total hysterectomy and just didn't want to deal with it at the time. My pt had told me what to expect with that test, and that's all I needed to hear.