Thank you Jen!!! I hadn't thought about the MS aspect at all! At the time of my MS flares I really didn't question the dx...I've had optic neuritis (more than once) and I have spinal lesions and permanent nerve issues. But, knock on wood, I haven't had anything major in quite a long time. I'd hate to have the MS flare up because of meds!!!

I'll be sure to get my letters and tests and such together. Should I send them over first...or just take them with me?

My Sed Rate and CBC's were off as well. My RF was low...low enough that it could've been from a virus. One really bizarre lab was my B12, it was through the roof high...lab couldn't even chart it. I never figured out the cause of that one either...since I don't take B12. My Primary did an MRI on my hands a couple of years ago but just to develop a baseline. I'd be interested to see what a new one would show now. Do you know the name of the type of MRI you had to show inflammation? I'd like to ask the doctor about it...that's none invasion so maybe he'll be agreeable.

Again...thank you for your reply!

PS...Is it normal for my hands to feel better after I've used them some? I'll get my nerf ball and use it for a while and it actually seems to help with the pain. Not sure what that means...if anything!

Wow RAcross, you do have some very hard decisions to make, I just want to send to you my prayers, hopeing all goes as well as is possible for you .

Thank you RAworried! I believe anyone with autoimmune has hard decisions to make. The drugs used to treat them can be very hard on our bodies.

The only thing I know that could raise your B12 is eating a lot of meat. That's the only food source that I know of that contains B12. Probably protein shakes would have B12 also. I'm sure the rheumy has a med that won't bother your MS. There are many to choose from. Your symptoms sound just like RA.

I hope so Huskies! I'd hate to have to trade one disease for another because of meds!

My gut tells me it's RA...but I still hold out hope that it's not!!! Lupus wouldn't be unheard of since there's so much of it in my family. Though I'm not sure if either is hereditary. Maybe just predisposed? I really don't know enough about either. I try not to read too much because I don't want to mental manifest symptoms. But I still want information so that I can make decisions that's best for me and my body. Understand? I guess we're all in the boat from time to time with things.

You definitely need a new rheumatologist.

As far as heredity goes, there seems to be a hereditary tendency towards developing autoimmune diseases, but they're not hereditary the way blue eyes are.

Yes, using your hands can help alleviate the stiffness, especially if you use them gently. For me, anyway, the line between "too much" and "not enough" is tough to find, and keeps moving anyway.

If you do end up with a dual diagnosis of MS and RA you are going to need to find a smart, caring, non-dogmatic neurologist AND rheumatologist. It would be nice if they would actually TALK to each other. Somewhere like Mayo or the Cleveland Clinic that it built around collaboration might be worth looking into.

Altoclef.... I travel to an MS clinic in Houston but live in Austin. It's a great idea to get both on the same page! I just pray that this new rheumy is more proactive in figuring out what is going on. At least attempt to treat the symptoms without just throw pain pills at me!

My line for over/under use is roaming as well! It would be so much easier if there was a set point! hahaha I've started keeping a pain/activity journal to help me. So far it's not much help!

I'm such a non-patient person when it comes to my health. I want answers and want them quickly. Sadly I know this isn't the case with autoimmune. I've even thought about going to one of those walk in labs and paying to have tests run myself!! Now that's desperate!

The problem with a lot of these tests is that while a positive result implies you have Disease X, a negative result doesn't mean you DON'T.

Do you like and trust your MS doc? He/she may be able to recommend a rheumy. Does UT have a med school? That might be a good source of someone with the requisite smarts, too.

RCross,

First..Hang in there and don't be afraid to find a new doc.

Second...I am one of those approx. 30% that are serum, or lab, negative for RA. My current Rheumy did an MRI of my hands and that was the definitive diagnosis. After doing some research on my own, an MRI is the gold standard for diagnosis so maybe which ever doc you end up with you should request one.

Julie

Yes...UT has a med school just not here in Austin. The MS clinic is part of Baylor Medical School. I'm very thankful that my insurance will allow me to see any doctor anywhere. I've been looking at the Cleveland Clinic since you mentioned it. It really would be nice to go somewhere and let them run whatever tests needed to figure out everything that's going on! I have so many random things I don't know what to mention to the doctor and what not to. For example, my vision prescription doubled this year! I've been wearing contacts/glasses for more than 30 years now and I've never had to double the strength at any one time. Is that sometime the rheumy needs to know?

The vision change I just attributed to MS...but maybe not? Ugh. Why are these diseases so complicated!!!

Julie! Thanks!! I'm very glad that my primary did hand MRI's when I first started showing symptoms. Hopefully this new rheumy will request them as well and we'll have something to compare to! My pain doc says he can see visible changes in my hands...and I've only been seeing him for 6 months.

According to my RA doctor, RA and lupus can have many similarities and time is the best way to determine which one it is.

When I first went to my RA doctor, she said according to my tests, I had markers of both diseases. The best way to determine which one I had was journaling every day, monitoring my symptoms, and communicating with her.

Good luck with figuring it out!

I've been reading about RA and Lupus this week and it does seem they are very very similar. Hopefully this new rheumy will see something that will help him figure out what's going on with me.

I'm on my 3rd rheumatologist in 6 years. The first 2 were ok but the third one is perfect! Having a good doctor is really important. I think you should tell all your doctors about all your symptoms. I tell my rheumy everything.