My name is Marjorie and I have been having symptoms for years. The worst part is my balance, causing multiple falls with minor and major injuries. The first neurologist whose care I have been under for the last 2 years did multiple tests serial MRI and a spinal tap. I have many diffuse lesions on my brain some deep some linear, one located around my thalamus. This MD finally 6 months ago decided that since I just turned 50 that I needed to slow down, pay attention and not think about anything but walking. If I did that I would not fall down, and he firmly told my husband that. As to my word confusion, gait abnormality,foot drop,( go to physical therapy) memory difficulties,( you are 50 and have a stressful job) and brain lesions-( well not to worry because I probably had the lesions all my life.) "e;Lots of people have funny little lesions on their brains and he said. Try not to be so nervous. Now every time fell my husband yelled at me to pay attention and you wouldn't fall. Not happy!
Long story short I have finally seen another doctor who explained that just because my spinal tap was clear did not mean I did not have MS. He examined me and within 15 minutes said I should have started treatment over a year ago. His diagnosis is primary progressive MS. Powerful feeling knowing why these symptoms are happening, but scary feeling after reading about primary progressive MS.
So as of last week after falling (4 times in 4 days )at work, being sent to the ER again, I no longer can hide my symptoms from my work. Now, I am not working, having some more testing, using a cane as firmly instructed, twiddling my thumbs, and waiting. Waiting for my infusions to be started, not knowing what to expect, waiting for the cognitive memory test to be scheduled so I know if I can go back to my job.
I am not sure of much anymore. For the first time in my life I don't have a plan. My future seems to be hinging on the infusions, the memory tests, the lab results and the new MRI scans. I am nervous about posting here but have been encouraged to take charge and talk to others with MS. So here I am.
Update May 2014-After much research, and many sets of infusions it seems I have secondary progressive MS, and the amount of symptom relief is minimal each time. I will not be able to return to my management position or clinical nursing. I am learning to rest when my body and mind says to, but it is not always easy. I am used to being the caregiver, the fixer, the knower of all things to run the household and being an RN defined me. This is not the case now. Its been a hard adjustment. I feel guilty that my husband has to get the groceries and cook dinner on my bad days. My dogs are the only thing keeping me sane! I am trying to stay positive!