I previously reported some eye issues in early March for an epiretinal membrane surgery (Dec 21 )that was supposed to help my vision be clearer, but it worsened. In March 22eye surgeon said surgery well healed, "brain not talking to eyes" and suggested immediate visit with neuro. MRi finally done April 21 at 7 am. Before I got home, dr called and wanted me on steroids . Had "new enhancing & diffuse restricting left ventral medulla consistent with active demyelination.
The prior year I reported extreme fatigue which continued to point couldnt get off couch some days, worsening bladder and bowel issues, complete loss of strenth and inabiltiy to stand straight up when walking, was bent over 90 degress. However this was not discussed in detail and I suppose my fault. It did deteriorate over the course of the year.
He had run some blood test at OV if I needed to be on a DMT and it included Hepatitis panel. I assume he was thinking Kesimpta . ( on my no no list but many are on on any list)
Several days later the Thoracic MRI came up on website and showed lesions at every level and enhancing lesions at T5 rt & T5-T6 on left. It also showed degenerative changes at T-11-T12 with Modic I changes. My only T spine MRi was in 2013 and not with this firm, although I supplied them with the CD. It was also mentioned in 2016 Cervical MRI that they could see active lesion, Done at their facility & results on their website but different dr. Again neither addressed prior to this.
My appt with him was rescheduled for Mid May. I am taking 24 prednisone pills a day. Today is last day. No other instructions until them.
I also made a follow up appt with neuro optalmologist at the same facility. My previous neuro opthal changed her preactice to a cancer center. I just sent out requests for medical records from 9 previous Eye drs for this new dr with 4 pages detailing the numerous and various issues with my eyes including loss of vision, dipolia l saccades etc, low risk glaucoma and the epiretinal issues including some optic nerve degeneration. I think multifactorial. . I wrote a summary that this is not my first rodeo and it is at a critical point since my vision has deteriorated significantly affecting my ability to drive, read fine print, see the captions on TV etc.
I thought the amount of paper might be overwhelming, but if he has a question, the answer is there. I dont think 2 or 3 tests are going to tie down the issue.
I am 75, I thought RRMS not as common for relapse. However, I think I had active cases since 2016 but they gave me steriods before the MRI so nothing showed up. Since there are innummerable lesions, I dont know the method the radiologist use to determine no underlying changes other than enhancements.
Anyway I haven't had discussion on options. I am thinking I do not want to do any DMT and would go with more strict diet and or supplements to help with inflammation. Any thoughts. Am somewhat "clean" but not entirely. Think anti inflammatory supplements may be important. Live alone and want to keep it that way if possible.
My son sent my article on remyelinating of optic nerve with an antihistamine, but it is still in trial.
I am resigned to living with limitations, just dont want them to get worse. any thoughts regarding DMT , diet supplements etc.
God is good and gives me strength
I put 3 reports into system and all disappeared. this is what came out. sorry last one cleaner.
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