HI I have not been on here in a while. I have been tested more everything these past two years. Still in limbo. I had mri's. spinal tap, genetic testing, and yesterday had a emg,which was not a pleasant experience. Most of my emg was normal with some very abnormal results by my eye. I have had muscle weakness i. my right eye for over two years. My right eye does not move to the left, Drs called it opthalmoplegia. Also had tests a few weeks ago for ssa antibodies, ssa was positive, while ssb was negative. It is for Sjogrens Syndrome. Dr. said It does not mean I definitely have it, I could have it or another auto immune like RA or Lupus. Anyways now nuero wants me to have a muscle biopsy, I have not yet decided to have it. He said the emg dd not show any muscle disorder, so I dont see that a muscle biopsy would show anything either. I was also tested for MG a couple weeks ago, which was negative again, I was tested for that two year ago. I am supposed to be referred to a Rheumy next, since the positive SSA test. Anyway just wanted to update you on here. I can understand how some people can get depressed, I think I am almost there, with all this testing and still no answers. My sister said to me yesterday, you know I still think you have MS. Well I dont know, but I sure wish they would figure it out. Thanks for letting me rant.
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That all sounds very frustrating. You know something is wrong because it is your body and you can feel it, there are some test abnormalities, but nobody can tell you for sure what they mean!
The EMG tells how the electrical activity in the tested muscles is working. Maybe your doctor is worried that the muscle cells themselves might show evidence of a disease that does not, in your case, affect how the muscle works electrically. The biopsy would allow the pathologist to look at the muscle cells under the microscope, which might help with making a diagnosis.
Maybe you could ask your neuro exactly what would be the benefit of a muscle biopsy? Or maybe see the rheumatologist and see if he/she agrees that the biopsy would be a good idea.
It's no fun being in limbo, but it does sound like your doctors are working hard to find a diagnosis. Then you could get a specific treatment plan.
I wish you the best with this, and hope you can get some answers to your questions. -
Thanks onlyairfare, I appreciate your comments. I think I will wait and talk to either my PCP, nuero opthamologist, or Rheumy if I ever get in to one.Comment
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"If I ever get into one..."
If there are delays in getting the rheumatology consult (and health insurers or medical group structures sometimes do impose arbitrary delays), perhaps your PCP could expedite things via a phone call or some other tactic?
With a positive SSA, sounds like rheumatology could possibly add some important information toward solving your puzzling case. You've waited a long time (two years of tests!) and you have uncomfortable unexplained symptoms bothering you. I don't know about your ophthalmoplegia, but when I had ON in one eye and unequal vision, I had horrible headaches for weeks until the ON cleared.
I'm still wishing the best for you. And sooner rather than later, an answer and some treatment.Comment
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Hi,
I'm kinda in the same boat, 2 years of weird stuff..but my MRI lesions (over 5) aren't too concerning to my neuro.
Seeing a Rheumy...C-reactive protein was very high in May...now my ANA is positive. She too does not want to jump to the LUPUS diagnosis.
My heart is telling me it's not LUPUS... even my Rheumy told me that LUPUS does not answer all my symptoms...many but not all and not the most worse symptoms(TN and lightheadness)
I feel the same way as you!!!
I've never had an LP..going to see an Opthomoligist in a few months...
I feel like I'm getting close to some diagnosis...
I sure hope you get some answers soon!
Like you...I'm leaning towards what my gut tells me!!!
That's why I still post on this site!
Take care,
Minnie76Comment
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