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  • I saw my ENT yesterday, and he looked at my very dry nose and mouth and is ordering a lip biopsy to test for Sjogren's syndrome. The clincher was that I also cannot shed tears anymore. He may want to do the blood test again, too. By this time I've had enough blood drawn to provide a banquet for the whole Twilight gang! Can Sjogren's coexist with ALS? Sjogren's would not explain the tongue fasciculations to the right when I speak.
    No, I never heard anything about a prednisone trial, but I'm seeing my ENT tomorrow (regularly scheduled appointment) and I will ask about a salivary gland biopsy and prednisone treatment. If he's clueless, I'll consult my neuro.

    By the way, I hope you're OK right now. You've been "in the game" for a LONG time! Is your diagnosis now PLS?
    I know its miserable. Be proactive in asking about a salivary gland biopsy. That way you'll know. Also, have you been treated with any sort of trial of prednisone?

    Hang in there, the road can be really long sometimes in getting a correct diagnosis. If it helps, many have been right where you're at. You're not alone.

    Keep me posted. I'm not around right now very much on the forum, but I'll make a point of checking in to see how you're making out.
    Holly,

    The blood test for Sjogren's is good, but its not enough to completely rule it out. People can have negative ANA's and have Sjogren's. You need to have a salivary lip gland biopsy done (not a difficult thing to submit to at all, it is a punch type biopsy taken inside lower lip usually)

    When you have become more active on this forum (# of posts) you will be able to private message me. You've got something going on that is affecting your cranial nerves, but it doesn't have to be a motor neuron disease. Keep your chin up!
    Hi---I have had tongue fasciculations toward the right when I speak, also numbness on the left side of my mouth in the evening. My mouth is horribly dry all the time, and I drink over a gallon of water a day, which does not help at all. I can't shed tears anymore and my nasal secretions have pretty much dried up, too. My swallowing is fine---I can eat and drink anything I want. My lower limbs, feet and hands are fine; no problems there. I have had this problem since about February of 2012. I gradually got wose and leveled off about November, when I went off an antipsychotic medication that I thought might be causing the problem. I've been tested for Sjogren's; blood test came up Negative. My neuro ran a ton of tests---blood/urine work (all fine), an MRI (clear) and an EMG earlier this month (Clear). He's scheduled another EMG in mid-April, hoping something will turn up by then.
    Hi, Everyone,
    I have been having problems with slurred speech and an excessively dry mouth since about February, and I finally got referred to a neurologist. He says it could be Bulbar Palsy, and is ordering tests. I had the blood work done yesterday, and we're awaiting my insurance company's OK to do the MRI and EMG tests. He will not make a diagnosis until he has the results of all the tests, but from what I read on the Internet, this is what I have. I'm still working and can still chew and swallow OK. I had a sinus infection back in early September (along with a bad cold) that has settled in my chest and causing a lot of problems with phlegm. When I eat, I can talk OK, and I'm OK first thing in the morning until the dry mouth sets in. Stress and Diet Coke (which I love) make it worse. Thanks, everyone, for any help you can give me!
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