Quote:
Originally Posted by limpy
My BP is extremely low and I also break my tablets and take every two hours to keep from getting the highs and lows of a higher dose less often. I do have an occasional mild twitch, but don't know that I can blame that on mestinon. May I ask how you were diagnosed with Sjogren's ? I had positive SSA/RO antibodies, but have not officially been diagnosed with anything. The lab results say that these are an indicator of a connective tissue disease such as Sjogren's or lupus.
Also, what is PN? I have been diagnosed with Lems, but have been trying to unravel the assortment of additional symptoms I have that have not yet been addressed.
Thanks for any answers and hope that mestinon works well for you. It helped me survive until I got my Lems diagnosis.
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I'm sorry, PN is peripheral neuropathy.
As for the Sjogren's, my blood work is negative for SSA & SSB (up to 40% have negative labs), but I had a lip biopsy that was very positive...and also a positive Schirmer's test to measure dryness in the eyes.
A positive SSA and associated symptoms (dry eye, & mouth along with joint pain, fatigue, etc) are usually enough for a definitive diagnosis of Sjogren's. Many doctors do request a lip biopsy for confirmation.
In my case the Sjogren's has attacked the autonomic and dorsal root ganglia along the spine and caused not only peripheral neuropathy pain, but significant autonomic neuropathy that includes severe orthostatic hypotension, brady/tachy heart rates (i have a pacemaker), gastroparesis, cardiac vasospasms, temperature dysregulation, heat intolerance, difficulty initiating urination and completely emptying...the list goes on. The low BP upon standing is my most debilitating problem as I literally cannot stand at times for more then a few minutes. That's why we are trying the Mestinon...because it can help to increase BP without causing high BP when laying down. And it can help with the GI movement.