I can't get help. How does a family get neuropathy?

Healthgirl · 03-07-2016, 10:31 AM

Quote:

Originally Posted by 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

No I haven't been checked for it. I've never even heard of it. Thanks. I will definitely ask about this. Is there a special doctor who does genetic testing. My neurologist doesn't seem interested in that... just likes to pin everything on random connective tissue autoimmunity, but with out a cause, there is no treatment.

SylvieM · 03-07-2016, 11:10 AM

Quote:

Originally Posted by Healthgirl

No I haven't been checked for it. I've never even heard of it. Thanks. I will definitely ask about this. Is there a special doctor who does genetic testing. My neurologist doesn't seem interested in that... just likes to pin everything on random connective tissue autoimmunity, but with out a cause, there is no treatment.

Hi HG,

There are a lot of sites on this disorder and I just took a quick look.....apparently any sort of doc can send in samples for genetic testing. I think the best thing for you to do is find an EDS foundation/organization that can refer you to an appropriate physician.....especially if your neurologist seems hesitant to pursue this.

You can read up on it in the meantime. Just don't get scared, for there are about 10 types of this disorder and some are serious.....others, as I sad, can be very mild ....so mild they defy detection until tests are performed. Google and learn!

By the way, I'm neurologist shopping now....I feel like I'm dating again... have an appointment at 1pm today. Two more slated. Let's hope this one's Dr. Right! (I'm still trying to figure out why I'm so sick too).

My best to you and your kids....

Sylvie

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