Hi all,
I'm a 29yr old woman in NC. I have RA and Factor V Leiden and MTHFR.
I've had several episodes of what I know are neuro symptoms. The worst started a few weeks ago (and is still raging). Heavyness/numbness in my legs, pins and needles in the balls of my feet, muscle jerks/spasms/twitches (whatever you call it!) vision issues, fatigue like no other, brain fog- to where words were no longer to be found in my brain! Total block! Or I just can't put a thought together. I stood outside my door staring at it with the key in my hand like- wait, what am I doing? How do I get in the dang door? etc. It is basically like problems I've had before individually (or at least rationed out) all hit me at once x1000.
I just had a brain MRI without contrast that showed lesions. Today is the MRI with contrast (not sure what will be shown differently). I'm still not under a neuros care- my ra doc is ordering this stuff to try to help me until I can get in.
So I think the two most likely causes for me are MS or Lupus. (or yes, 1 of 50 other things).
The problem with MS is... well I am one of the Dr. Google people. I KNOW the problem with researching on my own but it goes even deeper then what I can find online. My mother was diagnosed with MS for years- heck, I was doing in MS walks in jr. high! They never saw lesions on her MRI, assumed they weren't visable so they kept testing. Everything else fit so they were comfortable with the dx. Of course later it became RSD and a host of other things before she literally lost her foot.
So I see how things fit. Not a substitue for a dx and I get that but I am terrified I belong here. To MS sufferers RA sounds like a cake walk (and I get that and don't argue) but I've already had years of pain and difficulty getting around and functioning. This is so much worse and has me desolate. Because lets say I get in with the neuro and he says based on this that or the other it's not MS. We all know that doesn't mean it's not. I'm as scared of a dx of NOTHING as I am of a dx of ANYTHING.
I already feel like I have to push so hard to get help. With my RA I was first told I was depressed and put on drugs for that. For a ruptured disk I had previously I was told I didn't need imaging, I needed to work on my stretching. Maybe because of other issues my mom had I'm uber sensitive to being called/treated like a drug seeker, or attention seeker or whatever it is that makes docs hear me and think I'm lying or something. I was almost happy (sick as that is) to hear about the lesions because look- proof, and yet an elevated SED rate and positve rheumatoid factor test still had me taking happy pills for months.
I guess aside from venting, what I'd like to hear is how long/hard it was for you guys to get a dx- and I already know in MANY cases it's in the years and years goup.
I'm a 29yr old woman in NC. I have RA and Factor V Leiden and MTHFR.
I've had several episodes of what I know are neuro symptoms. The worst started a few weeks ago (and is still raging). Heavyness/numbness in my legs, pins and needles in the balls of my feet, muscle jerks/spasms/twitches (whatever you call it!) vision issues, fatigue like no other, brain fog- to where words were no longer to be found in my brain! Total block! Or I just can't put a thought together. I stood outside my door staring at it with the key in my hand like- wait, what am I doing? How do I get in the dang door? etc. It is basically like problems I've had before individually (or at least rationed out) all hit me at once x1000.
I just had a brain MRI without contrast that showed lesions. Today is the MRI with contrast (not sure what will be shown differently). I'm still not under a neuros care- my ra doc is ordering this stuff to try to help me until I can get in.
So I think the two most likely causes for me are MS or Lupus. (or yes, 1 of 50 other things).
The problem with MS is... well I am one of the Dr. Google people. I KNOW the problem with researching on my own but it goes even deeper then what I can find online. My mother was diagnosed with MS for years- heck, I was doing in MS walks in jr. high! They never saw lesions on her MRI, assumed they weren't visable so they kept testing. Everything else fit so they were comfortable with the dx. Of course later it became RSD and a host of other things before she literally lost her foot.
So I see how things fit. Not a substitue for a dx and I get that but I am terrified I belong here. To MS sufferers RA sounds like a cake walk (and I get that and don't argue) but I've already had years of pain and difficulty getting around and functioning. This is so much worse and has me desolate. Because lets say I get in with the neuro and he says based on this that or the other it's not MS. We all know that doesn't mean it's not. I'm as scared of a dx of NOTHING as I am of a dx of ANYTHING.
I already feel like I have to push so hard to get help. With my RA I was first told I was depressed and put on drugs for that. For a ruptured disk I had previously I was told I didn't need imaging, I needed to work on my stretching. Maybe because of other issues my mom had I'm uber sensitive to being called/treated like a drug seeker, or attention seeker or whatever it is that makes docs hear me and think I'm lying or something. I was almost happy (sick as that is) to hear about the lesions because look- proof, and yet an elevated SED rate and positve rheumatoid factor test still had me taking happy pills for months.
I guess aside from venting, what I'd like to hear is how long/hard it was for you guys to get a dx- and I already know in MANY cases it's in the years and years goup.
Comment