[Healthgirl]

I'm at wits end right now. How do 4 people in the same family get neuropathy with in a close proximity of each other? Doctors are finding it interesting but have no idea what to do.
Everyday I am thankful that their symptoms are not as bad as mine, but I am scared because they are children. All of us are having malabsorption with out stomach pain. 3 of us are having poor circulation and the levido neuro vascular rash. It all happened with in the same time period. Every day I try to figure out what we could have come in contact with.
I'm trying not to let it drive me crazy, but when I see the rash and when my daughter tells me what she is feeling like, I get so upset.
Could it really be mold? Is that realistic? Why wouldn't mainstream med be aware of something as timeless as mold if it could cause this kind of injury? Just venting. It is a miserable mystery.

[northerngal]

Maybe you have already written this somewhere and I missed it.....do the symptoms you are all experiencing get better in a different environment ? Might be interesting to see what happens if you are away from the place where everything started. Do you have pets, and are they healthy?
Are you in a position where you could be someplace different, even if it was a camper in the summer months, just to see if any of you begin to feel better once away from your current environment.

[madisongrrl]

Originally Posted by Healthgirl

Could it really be mold? Is that realistic? Why wouldn't mainstream med be aware of something as timeless as mold if it could cause this kind of injury? Just venting. It is a miserable mystery.

I don't know how true this is or where this data was pulled from, but I've heard docs who are into mold say that generally 25% of the population has a genetic issue with mold. And generally it's only one person from a family who gets really sick due to mold, in their clinical experience.

I think about your situation often and I'm sorry that I don't have better ideas to offer. I have several pub med searches set up for neuropathy that are delivered into my inbox every week and will share them if I run across anything that could be helpful.

[Jomar]

Maybe mold, bad water, bad pipes, some other toxin like radon??

Old house, new house?
city water, well water?
was the place built on a old dumping ground or low land that was filled?
Or high power lines nearby?

If a family in a home is having health issues , I'd check the inside & local environment for any type of cause.

If renting ask landlord about testing, or city/county health department, if landlord doesn't follow up..
How long have you lived in the place you are at?

[Littlepaw]

Healthgirl,

Are the doctors concerned about your children's livedo reticularis and think it from neuropathy? The reason I ask is that livedo is benign in many, many people and isn't always a sign of underlying pathology. It's just how some people are wired, self and son included. Are there other circulatory signs or pain? If not and there aren't biopsies coming back abnormal then maybe the livedo is a reaction to environment, temperature and stress? My son's is always prominent if it is cold in a room or if we are waiting at a doctor's visit. I can count on his coming up quickly anytime he needs a vaccination.
Sorry, if you have gone over this already and discussed the kid's results on another thread. It's awful you have to be going through this.

I too, am curious if y'all do better elsewhere.

Hoping you get answers soon,

[Healthgirl]

Originally Posted by northerngal

Maybe you have already written this somewhere and I missed it.....do the symptoms you are all experiencing get better in a different environment ? Might be interesting to see what happens if you are away from the place where everything started. Do you have pets, and are they healthy?
Are you in a position where you could be someplace different, even if it was a camper in the summer months, just to see if any of you begin to feel better once away from your current environment.

I began having clearly abnormal autonomic symptoms in Sept-Oct 2013, however they were not causing my life too much difficulty and were easy enough to deal with. My blood work was good so I didn't worry too much. Then over the summer of 2014 and into the fall, I became debilitated with severe neck, trap, and shoulder spasms and full body polyneuropathy with extreme worsening of autonomic problems. This lasted for about 6 months and then I began to have small improvements. This was all in the same house. We moved 4 months ago and I am not better, so now I am not sure it was the house. Although I don't know how long it would take to recover if there did happen to be mycotoxin exposure.
We do have a cat who is healthy, but I wondered about the possibility of catching something from her or one of the dead rodents she brought in.

[Healthgirl]

Originally Posted by pinkynose

Watching your children and not being able to solve it must be horrible. I wish I had something to add. I agree that if it has effected your entire family the home and surroundings would be the most sensible places to look but I feel like you've been doing that. If it doesn't appear to be getting better I would also try out a temporary change of environment if that is possible.

We moved 4 months ago. I was hopeful and thought maybe it was the house, but it seems like 4 months is a long time. I guess my daughter telling me about the cold wet spot the other day made me lose some hope. Still not lost yet though. Healing can take a long time when the damage is deep.

[Healthgirl]

Originally Posted by Littlepaw

Healthgirl,

Are the doctors concerned about your children's livedo reticularis and think it from neuropathy? The reason I ask is that livedo is benign in many, many people and isn't always a sign of underlying pathology. It's just how some people are wired, self and son included. Are there other circulatory signs or pain? If not and there aren't biopsies coming back abnormal then maybe the livedo is a reaction to environment, temperature and stress? My son's is always prominent if it is cold in a room or if we are waiting at a doctor's visit. I can count on his coming up quickly anytime he needs a vaccination.
Sorry, if you have gone over this already and discussed the kid's results on another thread. It's awful you have to be going through this.

I too, am curious if y'all do better elsewhere.

Hoping you get answers soon,

None of us ever had this reaction in our lives- in hot or cold. It happens when we are exposed to sunlight on the thighs. We all have a thinning of our skin and more prominent veins since the onset of this. It all happened at the same time. I was told by the team of doctors at Columbia that they suspect some type of vasculitis, but they had no proposed treatment and that was before my children were visibly affected, so I wasn't able to bring that into the picture. Now no doctor knows what to do.

[northerngal]

Originally Posted by Healthgirl

I began having clearly abnormal autonomic symptoms in Sept-Oct 2013, however they were not causing my life too much difficulty and were easy enough to deal with. My blood work was good so I didn't worry too much. Then over the summer of 2014 and into the fall, I became debilitated with severe neck, trap, and shoulder spasms and full body polyneuropathy with extreme worsening of autonomic problems. This lasted for about 6 months and then I began to have small improvements. This was all in the same house. We moved 4 months ago and I am not better, so now I am not sure it was the house. Although I don't know how long it would take to recover if there did happen to be mycotoxin exposure.
We do have a cat who is healthy, but I wondered about the possibility of catching something from her or one of the dead rodents she brought in.

It certainly is a strange case, hopefully you get some answers soon. I was asking about pets being healthy, just because I thought if it was environmental they might show some symptoms too.
So this happened in 2013/2014? no symptoms increased in anybody for 12 months in 2015? But, still no improvement...right? then a move 4 months ago, again no improvement? Just making sure I had it right.
So was there anything at all you can think of that changed in 2014? So hard when you have no idea what it could possibly be.

[SylvieM]

Hi NG,

Have you heard of or been evaluated for Ehlers-Danlos Syndrome? It is a genetic disorder that can cause peripheral neuropathy and Livedo reticularis. There are different forms of EDS and symptoms can vary widely in type and severity...it can often be very mild and difficult to diagnose. Needs a genetic test.

It is often an underlying cause of POTS and other autonomic disorders. *..lots of posters have it...including a number of mothers whose kids also have it.

I'm on my e-reader, so can't cite sources....but Wikipedia has a good description and just Google "EDS" and "dysautonomia"*

Just a thought.....I hope you are soon able to identify what is going on!

Best,

Sylvie