Hello all,
I have come to the forum out of deperation for ideas, stories, suggestions etc. My mother has been sick for a while with symptoms thought to be similar to MS- stumbling, balance issues, cognitive deficits, etc. More recently things got a lot worse. They tried steroid IV treatment (1000 MG a day) that did not work, seemed to worsen the issue. She had to have serious support to walk anywhere and her body jerked back and she developed twitches soon after treatment began. They thought it was Lupus because my grandmother had it and then they began looking at Sjorgren's Syndrome since my grandmother and aunt both have it.
Currently, my mom is in a hospital requiring around the clock care. She can walk only with assistance and her left foot drags. She has experienced numbness on certain areas on the left of her body. She has dry mouth and vaginal dryness issues, but no severe dry eyes, but issues with sensitivity in the eyes. She has recently developed a rash they thought was shingles, but found it was not and no one can give us answers. The MRIs showed lesions in the cerebellum and pons of the brainstem. The symptom list could go on, but you get the idea.
The first neurologist we saw was great, spent time with her, read her chart, etc. and took her blood to test for 14 major diseases. The antibodies he was looking for did not come up in her blood and he thinks it will show later as he has experienced with other patients. He explained he thinks my mom has CNS Sjogren's.
However, we saw another neurologist in the process who really disagrees and thinks this is "all in her head" meanwhile, my mom keeps high blood sugar (new thing) and she has jerks (backward mostly) and a low grade fever that consistently has been happening for months.
So now they are going to put her through physical therapy and psychiatric therapy, but one doctor still really thinks this could be CNS Sjogren's. Any suggestions? Ideas? Opinions? This is entirely frustrating since she's laying in a hospital confused/scared and we can't get answers. On top of it, she now thinks they all think she's a "looney toon" I am a 4th year psych student at UNCC, and we have always been told you don't rule someone to be psychosomatic when there are clear lesions on the brain.
Sorry this was so long, my mind just constantly races since all this has been happening!
