Having a severe first attack
I have had only one attack, but it was major. I was wondering how many people out there had a real bad first onset of this disease. My first attack started after taking an afternoon nap. I woke up and tried to get up from my couch where I was napping and Bam I fell to the floor and banged my head on my coffee table. I lost consciousness and when I woke up I had blurred vision and could not feel from the chest down. I was lucky enough that when I went to the ER there was a Neurologist who happened to be there and he ran tests to confirm that I was suffering from NMOSD. I went through a 2 month therapy in which I did not do well. I ended up with having to have a colostomy and an indwelling catheter as I lost total control of my sphincter muscle and all bladder control, along with the ability to walk. I have been pretty much bedridden since then. This was in 1995 and I haven't had another attack since. I also was one of the first people to start using Solaris when it first hit the market as the first FDA drug to be approved to treat NMO.
Hi there
I was diagnosed almost 15 years ago, I had 2 attacks in one year.
I’m currently on Enspryng.
Are you still
On Solaris and how are you doing on it currently?Look forward to hearing back from you !
-Sandra (moderator @Neuromyletis-optica.net)
I am apologize for not responding to you in a timely matter, but for some reason while I was doing some email upkeep, I accidentally put your site in my spam folder. When I recently was adding a site to my spam folder and I noticed my error and I wanted to make sure that I responded to your question. You asked me if I was still on Solaris infusions and yes I am still on this medication. You also stated that you are using the most recent medication that is supplied by the same manufacturer. Since you were diagnosed 15 years ago, I assume that at some point you were also using Solaris. If this is the case, I would like to know what treatment difference you have observed between the two products. I think, in my initial comment I stated that I have not had another attack since my first one. Because of this, it is the main reason that I have not tried the newer treatment. I justify this by the old saying 'If it is not broke don't fix it', but I am also curious about Enspryng. Since you have also been dealing with NMOSD for an extended period of time, I am interested if you were on Solaris, what benefits you have personally noticed. If you don't feel like sharing, I completely understand, but if you would, it would be valuable information that I could use. Have a blessed day, and I am looking forward to your response.
Hi this is not like me to respond twice so soon, it's almost midnight,I've had this cough going on three days, realy haven't eaten aswell,been drinking alot of fluids,my whole body hurts
how are you doing? Have any of your symptoms improved? Sending you lots of positive thoughts and well wishes. Thinking of you, Julie (team member) Hello Julie,feeling a little beter,this Flem is in abundance ,actually went outside for first time in six days. Thank you for asking
I hope things continue to get better💙. -Julie (team member)
