Would it be worth seeing a LLMD?
 

Hey all - will try to keep this short and sweet. I'm looking for some advice on what to do next.

Background info: 31 F, neuropathy started around the time I was diagnosed with rheumatoid arthritis. Neuropathy cannot be linked to RA. Sjogrens negative, no PAIN with neuropathy, just a lot of tingling feet, legs, hands, burning in feet, legs, and mouth, numb feet. No weakness, purely sensory symptoms. Everything is worse as the day progresses.

I saw a neurologist the other day that I waited 3 months to get in to see and he told me I didn't have neuropathy, that I had anxiety and I hyperventilate. You can imagine how devastated I was by this because now I have wasted MORE time while I have worsened, just to see yet another doctor who won't help me.

I've never had lyme ruled out and I do have a dog that I take into the woods often for the past 5 years. We have plenty of ticks here in central Minnesota. My mom thinks I should see a LLMD and I did find one down the street from me that is supposed to be very good, but of course she's expensive. My mom isn't worried about the money, but I honestly don't feel like wasting money if it wouldn't be worth doing.

With my RA diagnosis and positive ANA (which I have read can be associated with lyme) I just don't know if there is any point in going down the avenue of lyme disease. I also don't know what else to do because I can't find a neurologist who takes me seriously. I would love to get IVIG but I can't find anybody who wants to take the time with me to figure out if this is autoimmune mediated or not.

And of course, I can get in to see this LLMD within a week. So, you guys are more educated on this topic than I am - is it worth doing? The money I would have to sink into this to even get the igenex testing AND see this doctor would be almost $2k.

Thank you!

How was your RA diagnosed? RH factor or anti-CCP? Lyme can raise that ANA and RH factor but anti-CCP is highly specific to RA.

You can find cheaper LLMDs. Contact ILADS.org to get a list of doctors in your state. Else, I'm in Wisconsin and I can tell you that mine is way cheaper than that. And if you have BCBS insurance, my clinic accepts that as well. And if you don't have BCBS insurance, they will give you paperwork so you can try and submit to your insurance.

Thanks so much for the reply! Yes, unfortunately, I was diagnosed with RF and anti-ccp. My anti-ccp is on the low side, but still positive. My grandmother has RA, so I honestly do believe I have RA. That's why I'm wondering if it's even worth it to go down the avenue of seeing an LLMD. Are you in Madison? That's only 4 hour drive for me, if you wouldn't mind PMing me the name if your clinic? Not sure how that works or if you can do that. Thank you!

And I think it's important to explore every possible cause to your symptoms.

I'll message you.