[pickleeater]

I've been dealing with paresthesia in my face, arms, and legs for 4-5 months now. A month or two back, I started getting this crazy pressure in my head and my ears started popping (felt like I was in an airplane) and I freaked out and started trying to get some answers.

I've seen a GP who referred me to a neurologist to rule out MS. I had a clean CT scan and a clean MRI (with and without contrast) of my brain and spine.

The only thing thus far that is showing up is a positive ANA of 1:160.

So, of course I looked up lupus. I realize that this entire time I've had rashes on both arms (at least 6 months). I've had a few instances of crazy hives that were mysteries. From May-September of last year, the soles of my feet and my palms itched furiously. I was told it was hand, foot and mouth disease but that's only supposed to last a week, not four months. It never added up but no one ever took me seriously about it since they couldn't see much of anything. Once the weather cooled down, it disappeared.

I've got some intense fatigue and brain fog. Over the weekend I had a day that I literally felt like I was floating, and I couldn't think straight at all. I am noticing that lately I mix up words VERY regularly - I'll say "shirt" for "sock" and things like that.

I've had a low fever off and on (roughly 99F).

Joints ache, especially when I wake up, I can barely walk for about a half hour.

Neurologist sent me to get a ton of bloodwork but of course when I went to the appointment today they hadn't received it yet, so once again I'm just waiting. I know that this bloodwork is specific to lupus and other autoimmune diseases.

That said, if the bloodwork comes back normal, the neurologist already told me that he doesn't know what else to do and that he won't need to see me again...

So my question is, what's next? Do I go back to my GP and ask to be referred to a rheumatologist? Do I just sit back and wait to see if things get worse?

And yes, I know that roughly 5% of people get a positive ANA of 1:160, but how likely is this when I have many other symptoms?

Feeling lost, frustrated, and just wanting some answers (and guidance).

[CoolManMike]

I'm no expert by any means but I have recently found that I had been suffering from many auto-immune symptoms and began to clean up my diet to see if it made any difference. What I found was that I needed to heal my gut and focus on eliminating any problematic foods that caused my immune system to react. Once I began to eliminate certain foods, the inflammation throughout my body began to recede and the more gut healing foods I incorporated the better I felt over all.

[Breia Lee]

I came on your post and was wondering what, if anything, you might have heard from your neurologist. My advice would be to go to a rheumatologist, since you do have a positive ANA. The neurologist just doesn't know what to do with that information, since he ruled out MS.

Another suggestion would be to get retested for Lyme. All your symptoms could definitely be from late disseminated untreated lyme. I went 36 years without being diagnosed properly. The longer the lyme is untreated, the more the bacteria 'play' with our internal wiring, causing damage in multiple systems.

I had a positive Western Blot, the other test often used is the ELISA. Try to find a LLMD (lyme literate doctor) in your area and you'll have a better chance of actually getting a good test result that you can trust.

Good luck and I hope you are better.