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jen12 (@jen12)

Desperately Trying to Get Diagnosed

Autoimmune Diseases | Last Active: Dec 1, 2020 | Replies (75)

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@matttheschmatt

If it isnt Lyme Disease you might look into dystonia – (hemidystonia). This is a good description of the types:
http://brainfoundation.org.au/disorders/dystonia

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Replies to "If it isnt Lyme Disease you might look into dystonia - (hemidystonia). This is a good..."

Thank you for the advice– however, I have had 2 EMGs looking fo dystonia & they didn't see any, so I don't think this is it. Good idea though, thank you!!

I've suspected CFS/ME for months, but every doctor I mention it to tells me, "I don't know anything about that, so I can't diagnose you with it," so I stopped mentioning it. Maybe if I go another few months without a diagnosis I'll search more aggressively for a doctor in my area that knows literally anything about CFS/ME to see what their thoughts are. Thank you for the suggestion though!

John. My kids expect me to go to Dr have a quick diagnosis have prescriptio. And go back to being mom. It is quite frustrating. I think I will add a therapist to long list of doctors. If they go to appt with me, they act more knowledgeable than Dr and refuse meds on my behalf. Now I go alone and had talk with my almost lost RA dr. I cannot mention a new pain here or there due to their overly belief that mom will live forever. Now that cancer is mentioned, there is no discussion. Wait awhile and it will go away.
This is anything but Love. It is causing g serious problems. Have you ever heard of this. Now I quietly go to Dr without announcing it. So now they know I am well.

@oregongirl — Kids can be frustrating especially when they don't know what to do and are trying to help. I too wouldn't want my kids refusing meds on my behalf but I might like their advice if they have data to back up what their reasons are and help me have an honest discussion with my doctor. I think most doctors are open to discussing a medication and it's side effects and your need for the med. In my humble opinion, I think the fact they want to go to the doctor with you is because they love you. Cancer is scary and I'm sure they don't know what to say. It might help to get them together and have an honest conversation on how you feel and how they can help you.

@oregongirl are your kids open to discussing your situation and how it's affecting you?

Hoping you find some answers.

John

Don’t go to Mayo for ME/CFS. They are way behind on the research. They still believe it to be like a psychosomatic disorder and ‘dysfunctional syndrome’. Stanford is leading the research. Dr. Sarah myhill’s website and YouTube videos are great as well as her book. You may be able to just improve from her treatment. Mayo doesn’t do the tests they are using for research. They’ll just do the rule out testing for all the other similar diseases like MS and MG. Good luck!