I've thought I've had MS for years. About 10 years ago I started having some left leg weakness. My symptoms have continued intermittently, some new ones have showed up. In this time I've had a few of what seems like flares. Recently Ive had some big stressors and I have worsening symptoms.
Through the years most of my bloodwork has been normal. I had a + ANA a couple times, my RF usually elevated a little bit last month 25.
The + ANA sent me to Rheum. She dismissed me immediately. With the ANA of course Lupus comes to mind. She said all of my symptoms seemed neurologic. (Actually laughed at me. So shocked! I have a new rheum doc appt next month)
A few years ago i switched primary care providers and in the beginning, she was quite helpful trying to help figure out what was wrong. Now I think I'm deemed a complainer. She diagnosed me with lyme, though all western blots were neg, we did the IGENIX test and I did have multiple bands. She treated me for a few months with doxy etc. I still had a lot of numbness and tingling hands, feet, face, scalp, pain, fatigue.
2012 I saw a neuro who I thought was pretty thorough. He did a couple MRIs said i was ok. We did an EMG test, it was normal but thinking back, he did say my lower extremities had slightly reduced sensation. But said the good news is I don't see anything there. He didn't really think it was lyme and didn't really believe the IGENIX testing either.
Few general complaints:
I have been having right leg pain, weakness, hip pain at least the past 4 years. Prior years it was Left. hip "bursitis". cannot sleep on either of my sides.
Clumsiness. I might be standing still and somehow I move or shift and next thing I'm nearly falling over like I'm drunk!
numbness tingling in my hands (Feet have Raynauds. ) ,
extreme debilitating fatigue, (SO thankful she is at least treating me for this with some well needed ADD meds)
painful arms/shoulders
shooting burning pain forearms, one arm worse
wrist, hand pain
easy bruising
About a year ago, a few episodes of incontinence which i attributed to constipation. At the time a little too embarrassing to bring up for a small number of times that had happened.
More recent:
Many episodes of blurry vision.
A couple of months ago I had an acute onset of some very bad very low sacrum/deep pain radiating around my leg, seemed nerve related maybe. Right about that time I had been experiencing a sudden increase in urination so because of the blurry vision I went back to see the eye doctor and she did see a tiny slight hint of a change in one of my optic nerves. She was, along with me a little bit pleased that we did see SOMETHING. Meanwhile to me this is screaming MS! And my MRI got denied.
Because of this weird very low deep pain sacrum pain I was so pissed off when I arrived for the MRI about a month after the initial onset and it was for my lumbar spine. This MRI was normal. Of course it was. Side note, PT noted my plantar reflexes were absent. Nobody is concerned they say.
This week I went back to the urologist. We did the urodynamics testing and it showed dyssynergia. Had no idea what this was but I guess it's something to do with the urethreal sphincter or something. It only points to MS to me. There are not many other reasons to have this. I'm wondering if Urology was the one who figured it out? The EMG reading seemed to be the key part.
This is a busy office but she asked me to wait while she could dictate her note so I could bring it to my neuro appt next month with the study report. I've never heard of anyone doing this but I think she took me serious when I told her I've thought I had MS for years.
She couldn't say why this was going on but she said thats why I need to go to neuro. (But what else causes this I asked later? MS, spinal injuries, parkinsons...she says.
Anyone have any thoughts?
