I decided to start a blog dedicated solely to my medical journey. This way, I won't clog your news feed with all my studies, migraine info, medical mysteries, etc. It will also help in keeping people updated, that like the updates, without me having to say the same thing over and over.
I had an appointment today with Dr. John Foley. He is a MS specialist. I was referred to him by four doctors because of all my new symptoms.
I have this issue of being unable to void, used to only occur when I was in severe pain. Lately, I have issues of voiding independently at any given time, so I have to carry catheters with me every where I go. I have been straight cathing since August. A urodynamics test was done which showed I have a dysfunctional bladder, but nobody has been able to figure out why. I had small hemangioma in my bladder and polyps in my urethra. The Urologist told me I had him completely stumped. He told Rick and I he thought it was A typical MS.
I had a full body MRI scan that showed no plaque and obvious signs of MS. I had a lumbar puncture done in November. The docs thought I had build up of pressure in my brain which could explain a lot of the issues. I had no increase in CSF pressure, they said it was actually on the low side.
I was referred to the Moran Eye Center so they could examine my eyes and look for any signs that might indicate MS. At the last minute, they decided to do one more test because they noticed I had a dry mouth and dry eyes. I am on effexer, and dry mouth is a side-effect, so I thought nothing of it. The test came back indicating I needed labs drawn to determine if I had Sjorgen's Syndrome. The levels were slightly elevated.
I saw Dr. Hoesch(the neurologist that replaced Nina Riggins) a week later and he said he wasn't too concerned with the numbers. He said I would be concerned if the results came back in the triple digits, then he would be more concerned. He ordered a bunch of labs. He got a baseline of all my vitamin levels. They were all normal except for my Vitamin D level. It came back at 18. Normal value for the test he did is 30-80. I am supposed to start taking 50,000 units of vitamin once a week. He also advised me to resume B12 injections as there is not a shortage like there was last year.
My lab values came back in the triple digits." O.K. I am not going to worry, yet" I still needed to see Dr. Foley. I have not done a lot of research on Sjogren's Syndrome or MS, because I am scared and I don't want to freak myself by the "what ifs".
When I saw Dr. Foley today, he said I am exhibiting signs of MS and Sjorgrens Syndrome. My husband and my Mom told him I was getting worse instead of improving. I failed the neurological test. I couldn't even lift my right leg off the table. If I was being checked for DUI, I would have failed because I couldn't even walk a straight line. I kept falling over. He said I was in a tough situation as I am exhibiting signs of Sjorgens and MS. He said I need to get into a Rheumatologist ASAP and then come back to see him. He said I needed to start treatment for either ASAP. So, I got no answers today. Have to wait and see when I can get into a Rheumatologist and then arrange appoint with Dr. Foley. I left his office with nothing but confusion and frustration. I wish something could be identified straight forward, without all this guessing. I want to be on as few meds as possible.
I am fading quickly. I will update more tomorrow.
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