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My parents are the best 💜

Apr 17, 2016 12:54 AM

So I just wanted to share this because it made me happy, not less pained, but happy.

I've been experiencing symptoms since I was a teenager, but for most of that time I've simply pushed through it and not talked about it. I finally talked to my parents about it this year because it's started to interfere with my work and classes. They live hundreds of miles away from me, so they're not able to help me as much as they'd like, but even so, they're still doing so much. My Mom has been doing research and trying to help me find supplements and things that might help (unfortunately nothing has yet) and my Dad is always worrying about me. He said he was going to talk to my Grandpa (who is a Doctor) to try to get him involved, since I was too afraid to broach the topic to my grandpa myself (he's a bit like Dr. House).

Anyway, I was terrified that my parents wouldn't take me seriously or believe me when I told them, but the've been nothing but kind and concerned! I wish, so much, that everyone could have parents like mine. I'm the third person in my family to get a mystery illness that upsets life, so I suppose some part of me felt that I was doing something wrong by being sick, like we haven't had enough hospitals and sickness in our family, but of course it's irrational to think that way. And my parents have really helped me to realise that this isn't any fault of mine.

Apr 17, 2016 5:18 AM

That is a lovely statement about your parents, you are very lucky 👍👍

Apr 17, 2016 5:26 AM

It's good to see you're getting support and understanding, it's such a help. Yay!

Apr 17, 2016 8:27 AM

Hey Arvid, it is nice when you come to see that your family will support you with anything even when you have your doubts. It makes you feel even more loved than you had before. It also makes you realize just how loyal they are to you, kind and loving. It sounds like you have a very special family. That is a gift today. There are many people today who don't come from ideal situations as far as family is concerned. They don't feel safe or loved. I am glad that you do. Best wishes on getting the assistance you need for your mystery illness.

Apr 17, 2016 8:29 AM

I'm so glad you have people there to support you! It's so important!

Also keep in mind that if there is a pattern in your family, there are plenty of genetic explanations that could help you understand what's going on. Genetic sequencing in a medical setting is quite inexpensive now, and we know more and more every day. (I'm in the field so I can tell you how much it has been helping people these days!!) If nothing else, this could help you eliminate some of the options and help you focus on getting better.

Family history is hugely important and "mystery diseases" are getting less mysterious every day as we learn more and more. Who knows, it could be fun to figure out what percent of your genome is Neandertal and where your distant ancestors lived! (Make sure you do this through a medical professional, and not just through a website. Huge difference in the information and goals.)


I wish you all the best and am so happy you could share how supportive your family is!! I'm dealing with the opposite with my dad right now, while my mom is super supportive, so I've been wishing that I had the solid family support that you do!!! Know that you're very lucky!!

Al

Apr 17, 2016 8:29 AM

***Not sure why it says Al at the bottom of my message. I assure you my name is not Al. :)

Apr 17, 2016 1:15 PM

Loki, by 'mystery' illness, I really mean mystery. My Dad ended up with one of the rarest types of tumours in the world and it took years for him to find a doctor that was able to figure out what was wrong with him. My mom has had several types of cancer, which were less of a mystery, but my symptoms don't match either of theirs.

My family does have a history of RA on both sides, but everyone else was diagnosed in their 40s or 50s and I'm 20. My symptoms seem more in line with fibromyalgia, but then again, I still need to see a doctor to really figure things out.

Apr 17, 2016 1:18 PM

Wonderful that you have the gift of family support. I'm happy for you.

Apr 17, 2016 4:32 PM

Arvid-

First and foremost, go see a doctor and try to get a professional differential diagnosis, if not many. It's important to start doing tests and eliminating options as soon as possible.

With respect to rare disease diagnoses, there is a federal initiative through the National Institutes of Health (NIH) that funds efforts to identify causes of undiagnosed disease. There is a grant given to several top notch hospitals and research groups called the Undiagnosed Disease Network (UDN). Depending on where you live, and based on your family history, you may be a candidate for genetic diagnosis of rare undiagnosed disease. I would go see a doctor and ask about testing and diagnosis options if they are actually stumped.

I don't want to give you the wrong impression: absolutely work with your PCP and a good diagnostician before jumping to conclusions. That being said, please know there are many more options these days than in the very recent past, and genetic diagnosis of "orphan" diseases (those that affect only one or a few individuals) is a major push and a prime example of how cutting edge research is being applied to help patients who haven't been able to find options within the standard medical system.

If you would like more info, please let me know. I'll try to find a link based on where you live.

Don't assume the doctors can't help you figure these things out. There are a lot of smart people thinking about how to make you feel better, even if you're a rare case. They want to help, and often can!


Feel better and take advantage of the support from such a loving family. All the best.

Apr 19, 2016 8:38 PM

What a blessing to have understanding & supportive family. Hugs & prayers your Grandpa will have ideas or connections to help you! 🙂💕🙏🌼

Apr 19, 2016 9:48 PM

Thanks Flappys! I hope so too. I'm going to talk to my Grandpa this weekend and see if he has any insights

Apr 19, 2016 10:09 PM

Have you heard of CREST syndrome disease? I had not until I was diagnosed with it. It took 41 years for a diagnosis from a lifetime of pain. I was born with it & the first symptom for me was the hip dysphasia. Then the endless symptoms that were ignored due to lack of knowledge back in the 70s & 80s. My symptoms relate to lupus, fibromyalgia, etc. but there was always a disconnect. Good luck! I know now more than ever is the best time to be correctly diagnosed. 🤗

Apr 19, 2016 10:18 PM

I've heard of it, but I don't ever get rashes and I don't have hip dishasia, just hip pain.

Apr 19, 2016 10:25 PM

You don't have to have hip dysplasia, or skin rashes - every person can be affected differently.

Apr 19, 2016 10:32 PM

I've read a little about it, but not much. My Grandma has renaud's syndrome and cold sensitivities, but I don't. If anything I'm sensitive to heat and hot weather.

I've been trying to read about different conditions that could be causing my symptoms and so far fibromyalgia and ruematoid arthritis come closest. My pain seems to fit closest to descriptions of pain that I've heard/read for Fibro, but then, I'm not a doctor so I don't necessarily want to rule anything out either

Apr 22, 2016 11:24 PM

Well good luck! Keep us posted to what you find out.

Apr 22, 2016 11:36 PM

Will do 💜

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