Last year I started feeling patchy tingling sensations throughout my body, periodic stiffness, vertigo, extreme fatigue and even twitching. I had some trouble walking due to stiffness. I thought my vision went slightly blurred which probably sent me down the wrong medical path. Doctor thought it was something neurological like MS. Turned out the only problem with my vision was very dry eyes.
All neuro tests... blood tests, MRIs, evoked potentials, celiac biopsy etc... were negative. Neurologist was baffled and sent a referral to a sensory neuro specialist. During this time I also started to develop sore joints... my 2 big toes were stiff almost every morning and my left finger joints. After about 7 months of this my symptoms started to slowly go away and were pretty much gone by December 2011. By the time I saw the specialist neurologist in March, 2012 there was nothing really wrong with me except for the occasional stiff toes and fingers. He did a nerve conduction test which was perfect and said there was nothing wrong with me.
Then about 4 weeks ago it started up again but very different. Now it's only stiff arthritic feelings and it's on BOTH side. Both my thumbs were extremely stiff, exact joints of 3 fingers on both hands were stiff. At times my whole hand feels stiff and i couldn't even open a jar. I realized the walking problems from before, were really stiff hips and ankles. My shoulder blades are extremely bad and the physiotherapist says my upper back feels like rocks. I have extreme fatigue that I feel like I have the flu. This got me thinking maybe it's RA. I've noticed my ankles becoming weaker over the last few years and I had bilateral ulnar nerve entrapment 2 years ago (ulnar is opposite of carpal nerve). The MRI had noted mild arthritis in my neck
BUT... the strange thing is that the symptoms come and go. Sometimes my hands feel so stiff but then 30 minutes later I'm ok. Some days I am EXHAUSTED. But the next day I'm ok.
I've read there can be some early neurological signs. Has anyone else experienced this? Also does the stiffness come and go quickly? Would a negative nerve conduction test mean no RA?
I've just be poked and prodded so much over the last year, I don't want to go down another road that wrong.
No, a negative NCS would mean it's not your spine. Compression of the spine can produce a lot of the same symptoms you have.
But negative blood work is a problem. There is something called "sero negative" RA but it means you don't have any of the specific tests for Ra that are positive. You almost always have some problems with the blood work....at the very least, an elevated ESR(also known as the Sed Rate).
But RA is a great imitator so it could be but it might be something else. The problem with Ra is often the blood work takes time to catch up to the symptoms you have and the way the docs diagnose RA is by observation much more than through testing. The primary test for RA, the Rheumatoid Factor, is negative in about 25% of those with RA and is positive in about 5% of the general population without RA.
So rheumatologists watch you. They watch for patterns like the symmetry in inflammation. Some joints rarely get RA so they watch for them. Sometimes you get nodules but so do people with OA. Most get some red, hot joints but not always. Fatigue is prominent....fatigue that is worse than the worst flu you've ever had. It can start intermittently however. So with this mess, they have a criteria list for diagnosing and you need to have 4 of the 7 criteria in order for them to decide it might be RA.
The only thing I can suggest is that you find a rheumatologist that you like(that can be the hardest part) and then keep seeing them until they either rule it in or rule it out. Who knows, perhaps you have something else in their field starting......they do care for those with autoimmune disorders too. You've already ruled out a lot of problems and that will be a big help so take all those test results and see one and wait. You need to be a patient patient. It can take time.
I can't tell....you have some symptoms but a lot aren't. The dry eyes should have been a sign for someone to test you for Sjogren's Syndrome and that is treated by a rheumy as well and can be like RA...another avenue to go down.
I know how frustrating it can be but most of these disorders take time to figure out. But a correct diagnosis is so crucial. The new drugs they have now need a good diagnosis. So I'd find that nice rheumy to work with and start.
Good luck and let me know if you have any questions and please keep me updated on how it goes.
Thanks for the quick reply. They never actually gave me the ra blood test. I was referring to all the neuro tests... Lupus, Lyme, heavy metals etc... They started getting more and more obscure.
I also had some burning sensations in my cheek bones. Symptoms are varied and odd.
I'm still showing up to work everyday! It's the psychological part that's driving me crazy! When I told the specialist neurologist that my symptoms were almost gone, he said" can't you just let it all go away ". And when he stated nothing was wrong with me, I really got the impression he either thought it was all in my head or I'd been faking it.... That after a 10 min look over!!!
Doesn't it seem so lame to need someone to give your symptoms a name! I've had others suggest it might just be stress. (I'm not that stressed)
Agh sorry, just venting
Well RA is inflammation of the joints. But you need to get them to rule that out by doing a blood test to look for the RA factor. It would tell them immediatedly if that is what you have or not. Good luck. Hugs for today.