I haven't been here in AGES. If any of you frequent the Lyme board, you may know me from there.
I'm going to see my neurologist on Thursday for the first time in 18 months. I have been trying to get a diagnosis for almost 6 years. I have suspected MS all along - in fact, I just looked back in my records and on September 16th, 2005, my doctor stated "Patient is concerned she may have multiple sclerosis. She is sent for an MRI at her request."
I have seen probably 5 neuros since then...and they all said no MS.
Today, I can barely walk. My balance is so bad and my legs are so weak (left leg is weaker than right and muscles have atrophied - not sure if this is related or not as I have been diagnosed with sciatica in the past and am having a lot of low back pain on that side). I cannot think or focus long enough to have a normal conversation. I am unable to work out...my muscles give out on me very easily. Sometimes even typing is difficult. It is just as if they have a certain limit and then they're finished, so they stop working. I cannot feel my legs unless something is touching them or if I have my legs crossed so they are touching each other. If I am sitting in a chair and my legs are exposed...it's like they're just not there (proprioceptive dysfunction). It's the strangest and scariest sensation.
My only concern is that I have never fit the criteria for any type of MS besides PPMS. Since the first day I woke up with a symptom, I have not had a good, normal day. Every symptom has stuck with me. I have never had a flare that went into remission. Never. I'm confused because I have read about
MS for about
6 years...and even though I don't fit the typical presentation for RRMS, I don't EXACTLY fit with PPMS either. I have read that PPMS usually presents with motor issues. My first symptom was a panic attack. Dizziness followed, and it has never gone away. Things come and go all day long and vary in intensity, but nothing has ever vanished and I do not have clear cut or even remotely noticeable flare ups and remissions.
I'm petrified to say the least to go get another MRI. I fear that this time they will really dx me w/MS or something like it. Something irreversible.
I do not leave the house. I have been out maybe 5 times since June and 4 of those times were to go to doctor appts. My world as I knew it came to a screeching halt in June when all of my symptoms became 10 times worse and I acquired new ones that have still not gone away and seem to worsen as well at times.
I worry that because I went out drinking so much, maybe I contributed to this rapid decline that I've had...and maybe if I hadn't partied as much, I wouldn't be where I am today.
I have been on LDN for over 3 years...it doesn't seem to be doing a thing, and it never really did. I continued to get worse no matter what.
I do have brain lesions in the periventricular white matter. Impressions on my MRIs have stated anything from a possible demyelinating disease to things such as prior injury, ischemia, infection.
I'm only going to be 25 in a couple of months. I have zero quality of life and I'm afraid if I'm dx w/MS that I will just go completely insane. I have tried everything to manage my symptoms but nothing will do enough to get me out of the house. Knowing I had MS would kill me...because I know that the most I could do is try to prevent myself from getting worse, but I would also know I can't reverse what's already happened. I can't spend forever on my couch or in this house. According to everything I've ever read, they only use the CRABs on RRMS anyhow...but people w/PPMS can use LDN to see if it will work.
I'm not sure what kind of advice I'm looking for or if maybe I'm wishing someone will tell me to seek out this or that and get MS out of my head. But it's been in my head since I was 19, and it seems comfortably situated in spite of the toll it is actually taking on my mental health.
Thanks for listening to my rant...I admire everyone that pushes through this...if I am dx soon...I don't know how I will handle the RAGE I will feel towards all of the doctors who never listened to me. I will be so angry to know that had I started tx back then, these current issues would have never presented themselves.
Thanks again for listening...and I'm all ears now.
Post Edited (Jendays247) : 10/5/2009 11:32:37 PM (GMT-6)