Freaking out. New results back
 

For those of you who know me and my story, I just need to briefly freak out. As you know my daughters and I all developed symptoms at the same time. Because there is no cause found for my nerve damage, I decided not to get them biopsied because I know they will be positive and what would the point be when there is no treatment or solution and only nerve symptom drugs.

I took my little one to a ped gastro for yellow stool and diarrhea and she did a thorough workup.
I just got the results back for my 5 year old and she has positive ANA 1:160 speckled and Positive histone AB.
I am just completely freaking out to the point that I cannot even process this yet.

HOW??? How to 3 people in a family all of a sudden get autoimmune disease that targets the nervous system?

WHY??? Don't any doctors want to figure this out and help us?

For those of you who don't know me, my journey thorough this nightmare is in my old posts.

I'm sorry, I don't have any answers but I'm really sorry you are having to go through this. It's bad enough for us adults to deal with these unknowns, and I can only imagine how difficult it is to have your girls affected as well. I hope you find some help soon. Since the gastro ordered such a good workup, is there any chance she could be of some help?

I have nothing profound to say, and can only pass on a hug.

:hug:

I was thinking the same thing. This gastro seems to be conscientious and may be able to help - especially since you all three have the same symptoms.

I'm wondering if a virus triggered an immune response for a shared hereditary problem, but for the life of me I don't know if that is possible or what the problem could be.

I wish you nothing but good news, or at least useful news, so you can keep your family safe.

Healthgirl, I understand your worry about your daughter.

There are two parts to an anti-nuclear antibody (ANA) test.

The first is the titre - the larger this number, the more anti-nuclear antibodies are present in the blood. Your daughter's titre (1:160) is slightly high. The second is the staining pattern of anti-nuclear antibodies in cell nuclei - that is what "speckled" means.

An abnormal ANA test (and also an anti-histone antibody test) suggests but is not necessarily diagnostic of an autoimmune disease. False positives (abnormal test results with no autoimmune disease) are quite common.

It might be an idea if you arranged for your daughter to see a specialist rheumatologist. A rheumatologist will be able to do a more detailed assessment of her.

With care and concern.

the viral theory is the one that my neurologist has, so she supposes it is possible.

I will definitely be taking her to the best I can find. I am pretty sure they won't be able to do anything though. They checked me up and down and can only come up with meds to mask the pain and symptoms.
My poor little girl couldn't empty her bladder last night. She has had this occur several times of which I hoped were all coincidentally similar to my problems.

All of our symptoms are neurological.
It was extremely upsetting to me, especially after seeing her blood tests, but I just told her it was ok and tried to keep smiling as I try to do when either of them tell me about the tingling or other issues. Then I put her in the bath and she thought she was peeing. Her legs were tired and "bothering" her and she felt hot and cold at the same time. This is just maddening that no one can figure this out.
I contacted John Hopkins, so waiting to hear what they say.

I'm sending positive energy, prayers and hugs. I wish there was more I could do.:hug:

Healthgirl, I've followed your story over the past months, and can only imagine how horrible it must be to see your children going through this - while trying to take care of yourself at the same time. I truly hope you can find the reason behind your family's problems, and an effective treatment.

Did you hear back from Johns Hopkins?

I'm really sorry to hear your kids are affected by this. I just wanted to mention that I remember reading a case where a whole family was afflicted with strange neuro symptoms including the children. It was a case of ciguatera poisoning from seafood here in Australia. Just thought I would mention it too you.

I do often wonder about something like that. I have asked many doctors if they think this could be linked to all the camping and lake swimming we do. They just shrug.