My long journey
I will be 70 in August and I have been dealing with first a diagnosis of Idiopathic MS by one MS Specialty doctor, then we moved across the country to Nebraska, and an MS Clinic director where she took me off of the MS drug I was on because she said I didn't have it. Diagnosed me with Transverse Myelitis. This was in 2011. Since then, I've lost track of how many hospitalizations I've had. Fast-forward to the last four or five years, I have developed lesions on my brain stem and deep in my brain. It has left me with double-vision, a real problem with gait and balance (I have a walker and wheelchair), a serious problem with incontinence, and whole-body tremors. Please, does anyone else have these kinds of things going on or know someone who does? My neurologist has tried all kinds of treatments and I'm tired of being a guinea pig. I need some advice. What treatment will stop the brain stem lesions, anyone know? Sorry for the rant.
I would suggest that you make an appointment with a Neurological who specializes in NMOSD. from the symptoms you are having, they are consistent with people who suffer with this disease.
This is sounding a lot like NMOSD! I have a brain lesion too. You should get into contact with a neurologist that is knowledgeable about NMOSD & also ask for blood tests for the antibody AQP4!
This is definately sounding like NMOSD, I am on Uplinza infusions my lesions on my spine, and Oxcarbazepine for spasms which may help you with the tremors. Definately seek out a neurologist who treats NMO.
I also am on Uplinza. One IV every six months to deplete my B cells. I was first diagnosed with MS but it was NMOSD. I was having trouble with my right leg and 1/2 of my right eye. Never lost any vision or ability to walk, but totally in pain in by back where your bra sets. Lost 18 pounds, went to MAYO clinic in Rochester, several different Dr's in Omaha, NE. Ended up in emergency room under Dr. Francisco Machuca. He did diagnose it but NO one read his report. There was no bed available at that time in Omaha. I was loaded up with steroids and I went home against his advise. By the next morning I was on my way by ambulance to Omaha and they kept me a week and STILL never read Dr Machuca report. For a week I was subjected to all kinds of test and thats when they told me it was MS. But then I got into Neb Medicine and that is where Dr. Shirani called me late one evening and told me I has NMOSD. She then took over my health and I started Upllinza. I still have numbness in my feet and above and below my knees and alittle back pain. They said I will have that forever since its been two years. God bless you and find a good Dr. that will help you😀
