Chiari Online Support Group

Should I see my NS or some one else?

Lately, my arms and legs have felt pretty numb. Well, my whole body really. I can still feel but just barely. I’ve been dizzy and lightheaded, faint. A week ago I was having debilitating migraines. I couldn’t do anything but lye on the couch. I get pain in my legs at the end of the day. Maybe it’s blood pooling? It happens in my arms sometimes, too.

I don’t know if this is my chair or not. I thought maybe it’s something else associated with it? Maybe vitamin b12 deficiency even though I eat enough meat and dairy. Maybe my body isn’t absorbing. If it’s that, should I just request blood work from my GP? Is this too weird that I should just make an appointment with my NS? If anyone could tell me if I might be experiencing something they think sounds familiar that isn’t exactly charity and what doctor I should see, could you tell me? Or should I just see my NS? I haven’t seen him since 2010 which is too long anyway but any advice is appreciated.

Being that I’m in Australia our systems may work a little different. To see a neuro here you need to have a referral from a GP anyway. The GP (usually) does all those tests blood tests and scans prior to referring you to the specialist neuros. The radiologist would make a report on the scans and the GP would decipher all of the jargon from the radiologist, then make the relevant referral/s. You state that you haven’t seen the neuro since 2010, here most referrals must be less than 12months old to still be valid. So I wouldn’t be able to see a neuro without seeing a GP here.
And I think that’s what I’d do, go see the gp and if he deems necessary get the tests done, then follow those results up.

Merl from the Moderator Support Team

Being in America odds are you don’t need a referral to see a neuro. The problem is you haven’t seen one since 2010 so you’re not established any longer, he may not consider you a patient but it’s worth calling the office to see.

I assume you’re using insurance, 97% of the insurance plans in America don’t require any sort of referral, it’s considered a time and money waster to have a GP “screen” you to a specialist. I’ve worked in the health insurance industry for 25 years, there was a brief period of time when referrals were required, not so much any more. Unless you have Med D, that’s a different system because it’s a government plan. Some offices require referrals but that’s an office requirement, not an insurance requirement.

Call your neuro and see what the office requires to establish you as an active patient is my advice. And I advise getting in sooner rather than later, new symptoms should always been checked.


Thank you both for your advice. I’m on my mom’s insurance plan but am turning 26 next month. I’ll be able to keep the coverage until the end of the year but am rather afraid about what I’ll do when I no longer have coverage. I’ve not been able to get a job. So because I don’t have much time left, I’m trying to get things done now. I’ll try calling my neuro’s office and see what I can do.


Various forms of ObamaCare are still available in some states (some states have none, though). The thing is, it’s not cheap, and it’s hard to find doctors that take it since it’s generally bad plans. But, you’re dealing with a chronic condition so you don’t want to be without coverage for more than 67 days. You go without coverage for 67 days or longer and it’s considered a pre-exsisting condition by many commerical/private plans which means they won’t cover it for the first year you’re on the plan.

Basically, you must have some sort of coverage to avoid long term costs going forward. You may need to take a j-o-b as long as it has insurance just to get by.