Medical mystery

Hello I am new to this site. I am 36 years old and my medical mystery started when I was 17. I still do not have a definite diagnosis. I have no idea where to start but I have numerous symptoms and they all vary day to day.

Main symptoms are

  1. Blurred Vision
  2. Double Vision ( started randomly in 2012)
  3. Chronic back pain (between the shoulders and then it radiates to other body parts).
  4. Joint pain in my legs and arms
  5. Numbness and tingling (whole body)
  6. Hands and feet turn blue and white (this is a new symptom that started in the last month or 2)
  7. Headaches
  8. Slurred speech and loss ability to speak with drooping left side of my face. (They believe this was a Migraine with all 3 aruas types at the same time)
  9. Memory loss
  10. Multiple GI issues
  11. Delay in finding and sayong words.
  12. Weight gain
  13. Balance issues

Anyone with have similar experience? I have been trying to figure this out since around 2000 and I have seen so many doctors but no one can figure me out. They say they suspect Fibromyalgia but others say nope. I am so confused and just want answers at this point. Doctors look at me like I am crazy or think I just want pain meds. I have turned down pain management multiple times bc I do not want to just take narcotics and relieve the symptoms. I want to figure out what and why I have these symptoms.

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Have them check for Lyme disease if you can. Not an easy thing to deal with but i have it and took a very long time to have them test me for it. Its a blood test but make sure you have them check a couple times if your able to have them do that for you. Here if i can help as i have Lyme disease

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They have checked for that but it has come back negative. Thanks for the suggestion.

Well thats how mine started out but then they checked it a couple other times and now its showing i have it. They told me when i finely got the positive reading that we can carry it for a lot time before its even detected that we have it. I wish i could help you out but if you need an ear im here for ya wish there was a pm or a way to do one on one chats but know im here for you.

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Have u thought about a brain aneurism, my grandmother had one & so did my mother n law. They both had some or most of the same symptoms. They were both treated & n good health now.

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Thank you.

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I have had either a cat scan or MRIband they did not find any evidence of that but I am sure it is still possible. I also for got to include depression, anxiety, and insomnia in my list of symptoms. I have been referred to a neurologist and I am hoping that I can get in soon. Just waiting on the call

Your welcome 😊

I have a lot of those same symptoms. I have a Nerve and Muscle disorder, diabetic, get major complex mirgaines and I don’t have a thyroid . Best of luck

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Thank you. Good luck to you as well.

It might be two different things. Instead of just one. My husband had 3 brain tumors and he had a lot of those things. He also was a diabetic. Good luck with them diagnosising what ever it is. Wish you a long and happy life. May God bless you and keep you.

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Thank you. You too.

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Have them check for neuron muscle disorders, mainly MS

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I will ask them to test for that. Thank you

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I don’t know which contey belong,which religion you have faith.But guessing you are not from India where multiple therapies practiced.The alternative therapy the health problem is analysed & addressed with different
approached.It marks all pain uncomfort as toxin has set in body.This occure due to climate condion, diet culture & lifestyle.
If you choose alternative therapy like nature cure, ayurvedic where by you will get detoxified to get rid of symultaniously.Find consultant local or internet online & consult them

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Sounds like you may have an autoimmune disorder. You should see a rumatologist, they test for a variety of autoimmune disorders andmay be able to help you.

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Some of it sounds like MS, have they ever checked for that?

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Not sure. I know they did a CT when I what looked like a stroke (no damage left so they think it was a complicated migraine).

My family (my dad, two sisters, and I) struggle with a lot of these same symptoms. Most of us, looking back, realize there were symptoms long before everything fell apart when we were in our 30’s…and since my sisters and I are only a few years apart, it happened within a few months of each other for some of us. But my Dad was in his 30’s when he had his first major flare as well. It literally felt like we had opened Pandora’s box and we couldn’t shove everything back in the box and ignore the symptoms anymore. Life literally stopped for me in 2015. I used to work full time, we went camping all summer, rode 4 wheelers and dirt bikes, went Jeeping, and I kept my house pretty much spotless at all times. Now I am on disability and can’t work, we usually only go camping 1 time per year, I can’t ride my 4 wheeler at all anymore, and can’t even do simple house chores like laundry or load the dishwasher.

I was referred to a Rheumatologist and was diagnosed with Rheumatoid Arthritis last month, but I still think there is something else going on in addition to the RA…so does my GP. My GP thinks its definitely something genetic, but he thinks it’s something that hasn’t been discovered yet. He said that genetics are advancing so fast, but he thinks it won’t be found until the next 5 to 10 years. So at this point…we just wait and handle the things we can diagnose and deal with the symptoms we can’t diagnose.

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I hope you find out soon what is going on with you
To help you with an answer to all your questions