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Recurrent episodes of intense symptoms with no answers - I Need Help
Brain & Nervous System | Last Active: Aug 8 6:52am | Replies (18)Comment receiving replies
I very much appreciate everyone's comments. I finally went to a new doctor (my family doctor left the country and apparently isn't coming back) and she watched me move my hands and immediately told me she was sending a priority referral to a neurologist. To be quite honest it was such a relief to be listened to that I almost cried, haha.
I'm wondering if anyone has any advice for meeting with the neurologist, or if I should make another post. I'm a bit afraid that what happened with the hematologist (extremely dismissive, wouldn't even let me tell him my symptoms) will happen with the neurologist. I'm afraid of ending up "outside of the loop" again and having to start from square one or wait until things get worse. I'm really frustrated with having one doctor tell me that something is awfully wrong with me and then have the next tell me it's probably a red herring or false positive.
I've heard a variety of things about mentioning illnesses that match up with your symptoms to doctors. I've heard that it can help them get an overall picture if you're experiencing a lot of different symptoms but I've also heard that doctors can push back pretty hard because they're sick and tired of patients trying to self diagnose, which is very understandable.
I'm almost wondering if I should take a stance that I want to rule everything I possibly can out.
Thanks again everyone, I really appreciate it.
Replies to "I very much appreciate everyone's comments. I finally went to a new doctor (my family doctor..."
SS?
My neurologist and my Rheumatologist want me to go to specialist as I'm abnormal in a MS test from Mayo Clinic, but bands are within normal range. I had a MRzi without contrast and my white matter is not right and I'm showing infracts and have always had low blood pressure.. MS can cause those.. I also have limited scleroderma with all those symptoms going strong. It can cause infracts as well with damage to the vessels and it can cause small vessel disease.. They both feel they weren't knowledgeable enough and has referred me to that specialist . I'm now waiting to getting an appointment with her. I am having lots of MS symptoms as well. I'm wishing you luck!!
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I can't help you with your question but maybe in another way. Many if not most of us on here are in need of special people. Just because someone graduated from medical school and calls themselves a doctor means very little. Each of us must search out the real healers within our individual orbits. Don't give up. The ones that ignore you or are sarcastic or unhelpful are because they have a diploma but no real knowledge. I have a list of 100 doctors and maybe 15 of them are really good. It doesn't take a high IQ to pass medical school it takes a lot of money. I spend hours on the internet every single day because I have symptoms that are different from what the book says but they are real. Each of us is slightly different even if we have classical parkinsons symptoms or in my case "brain syndrome" that's a really broad bucket of worms. Please don't give up but take command and go from there. I start with google because they have a spectacular search engine. I am learning chatgpt4 because it is also a powerful search engine and you can ask the same question in 10 ways and get incredible results that have nuanced differences. Bless you.