Breaking free of the cotton candy web of denial...

[Lola]

Yes, he does believe they are Wegs related.

[moyan]

Moyan, you make me laugh...you got a great sense of humor!

Ditto, elephant!

[Sangye]

Lola, I can't emphasize enough how serious CNS Wegs is. I used to belong to another support group and there were 2 people with it. It can progress very quickly and become life-threatening. Also, like Wegs anywhere, the damage caused is often irreversible. Blindness, paralysis, loss of coordination, loss of speech, mental impairment, etc...

Please, please get a Wegs doc involved immediately. Once they know you have CNS Wegs they'd be on the phone the same day. It's that bad. There is a different protocol for CNS Wegs.

[Brooke]

What is CNS wegs?

[JanW]

Wegs in the central nervous system.

[Brooke]

Thanks Jan, what symptoms would that be?

[JanW]

Ironically, I communicated with a woman who had this variant the day before I had my surgery (scared me to death, I tell you). For her the first symptom was blinding, searing headaches. She had been in remission for several years and avoided thinking about her symptoms. When she went to the emergency room for the pain she had tons of lesions on her brain. She quickly became disabled (she's a writer but she couldn't even do that, or get out of bed). She eventually lost her hearing (permanent) and acquired a saddle nose (although she initially had sinus involvement so that was probably related to that). I would say that if a Weggie starts having weird neuro symptoms (tripping, loss of balance, unexplained weakness) they should totally get that checked out. It's rare, but probably not much rarer than SS, I'd bet (15 percent of WG patients).

[Sangye]

(Jan, good timing for that conversation! The day before your surgery....)

In addition to those symptoms: dizziness, vision changes, confusion, memory problems, etc.... With Wegs we can never think "Nah, it's so rare it won't happen to me." I'm a walking collection of rare complications. Gotta thoroughly check on anything that's out of the norm.

[JanW]

I know, right. Turns out that my surgeon had been her ENT at one point so there's that...but her story was extremely frightening and brought home to me how we can never be in denial even if we have been in remission for a long time. Her headaches went on for months before she sought help.

I think WG is one of those things where when the doc says, "anything at all, give a call." -- You do.

[Lola]

OK, now I'm getting scared. I just talked with my husband - how does one have a visit to JHU, for instance, paid for by their insurance co? Will ins. pay for a non provider like that? I've been reading the posts, but don't recall answers to these questions.

Also, does anyone know what the protocol is for treating CNS Wegs?