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Hello @moxie928, welcome to Mayo Clinic Connect and it's OK to vent ☺ I think it may be the first step to become a better advocate for your own health...which is something I really believe each of us has to do. I do tend to cut the doctors a little slack most of the time unless they really don't listen. I know that there is no way that most doctors can possibly have the knowledge to be able to diagnose every disease and disorder but that's when I would expect them to ask for help or give you a referral to a specialist. That's one of the reasons I really like my Mayo Clinic doctors at the local Mayo Family Clinic I go to. They work as a team and can provide a referral when needed. Of course I have some friends that are the opposite and want one doctor cradle to grave for continuity.
Are you able to ask your doctor questions about side effects and alternatives? Before I was diagnosed with idiopathic small fiber PN my doctor prescribed gabapentin for the numbness I was feeling in my feet and legs. I took it for two weeks and then told her it wasn't working so I stopped taking it. She brought in her team lead doctor who was a little more thorough asking questions about my symptoms and when I told him I didn't have any pain just numbness and tingling. He said that explains it - gabapentin is only for pain and will do squat for numbness. That was one of the doctor exchanges that got me doing my own research and questioning and drugs and possible side effects before I took them.
Hope you find some answers.
John
Replies to "Hello @moxie928, welcome to Mayo Clinic Connect and it's OK to vent ☺ I think it..."
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Thank you, John. 🙂 I was actually referred to an out of town rheumatologist and I really like the doctor I was seeing but for some reason, I saw a different doctor this time. The first rheumatologist I saw knew how I felt about going on a medicine without really knowing what autoimmune disease I actually may have. and knew that I wanted to just watch carefully and see if we can get a little more information before treating an unknown cause. The new guy didn't give very good direction of what to do, other than he wants me to get my eyes examed so he can put me on Hydroxychloroquine, he said it could cause color blindness. doesn't sound fun. He also said its a really mild drug..... but isn't this the same drug they use to treat Malaria? Sounds scary, and not so mild.
So, I have a question, does anyone know if its true or not, or have any experience of their own about a particular type of diet or what to avoid? My first rheumatologist told me to keep eating the way I eat (Vegan) and then I have read somewhere today about a cookbook for autoimmune diseases and it said that all recipes were free from corn, eggs, dairy, gluten, and soy. Can anyone expand on this idea? Or have personal experiences with trying to eat a diet without these types of foods? I eat mostly vegetable but I'm not gonna lie when I get sick of cooking and preparing all my food alllllll the time I will buy processed foods that often have soy and gluten in them.. I've always wondered about Soy whether it's healthy or not and gluten I don't really know a lot about but I know it is the latest fad at least of things to not eat.
I look forward to hearing back from others.
Thank you.