Update time
 

Hello everyone,
It's been a while since I've posted. I check in every now and then to see how everyone is doing. I still seem to be stabilized to the point where I can function with breaks and restrictions in activity. I can do light housework if I pace myself. I can drive the kids around and run errands, cook meals, etc. Everything hurts and I do have flares during the day/night, but they usually pass and I'm left with a baseline of pain and neurological symptoms. It's not easy.

For those who know my story, know that my children are affected as well (thankfully not as severely as I). Our symptoms go back to about 2012. I have what I am desperately hoping is some good news! I took my little one to a rheumatologist. He looked at my blood work, diagnosis, her blood work, asked many questions, and was interested in the symptoms of the rest of the family. He said it must be genetic- sounds like environmental exposure. This is what I suspect and have had no curiosity or help from any doctors about my kids and how absurd this is. Anyway, because of this doctor, a scientist from Columbia is working on our case and putting together a team of specialists to analyze this situation. It will take a while, but they will have access to all of our files and then determine what genetic testing we need. I am thrilled to be finally getting someone to see this as one thing! It will take time for them to get all records transferred and get us in, but this is what I have been desperately trying for.

Now thats my news. How are all of you doing? Updates?

Hi there! I haven't been on in a while also.

I really hope something comes up!! Good luck!

As for myself, I'm still plugging along. The neuropathy has switched from painful to mostly losing sensation to touch all over my body-head to toe. It feels so odd to be touched-I can feel it, but it is weird and muted.

Finding the cause for me is basically at a stand still and I've accepted that, because it is most assuredly due to autoimmune activity of some kind-so I try to just be healthy and live. I do ok with it-and I can enjoy life this way. I hope I stay this stable.

Oddly, I had a second nerve issue recently. A disk in my neck herniated severely (not sure why-genetics in my family predispose us to bad backs and loose joints), and it was half into my spinal cord and also crushing my C7 root. I lost strength in my tricep. I was operated on at Hospital for Special Surgery a month ago, and the symptoms are much better. I hope to make a full recovery from that-but we'll see.

Hope everyone else is doing well. :)

Did you ever look into Ehlers Danlos syndrome? I understand that it involves joint instability, can run in families and go undiagnosed. It can cause nervous system problems. I will be asking the geneticist about this. I also have hernations at c5-6-7 and it's no joke. Mine aren't worth operating on though. I'm glad you got some relief from the surgery. Always still hopeful for healing.

I've looked into EDS-I have been told by several docs that I might have a mild version of it. It is something that is part of the picture for me, but outside of exercise and posture control, not much can be done, so I do my best to keep workout out my core and strengthen muscles around the joints. I get compression nerve issues easily (things fall asleep quickly in some positions).

It explained why I own a brace for every joint in the body haha

I am thrilled to hear your news.:D

Great News, Healthgirl
 

Hi Healthgirl,

I am thrilled to learn someone is helping your family in this way!
I hope it turns out to be truly helpful.

We just never know when someone might cross our paths with some additional insight and with resources which enable further assistance.

I am hoping this is truly helpful to you and to your family.

Love All Around,
:grouphug:

So glad you found someone trying to help rather than just shrugging!

Hi Healthgirl

Glad you finally got someone to take you seriously. All the best for the scientists finding some answers and meanwhile minimum pain and patience for you and your family while the wait continues.

Healthgirl: Best of luck with this new study, I hope you find some answers. And, I hope those answers include an effective means of treatment. Keep us updated.