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An Update: New Leg Symptom
Kinda freaking out here. I've been whining a lot on this message board (sorry!), but it's really my only outlet. The past week has been rough.
My vision went from going blurry on and off to actual double vision last week for the first time ever. On my walk home from work on Thursday and Friday (about 1 mile), I noticed that my left leg would sometimes stiffen and sometimes feel like jelly, in both cases just below the knee and about six inches above it.
I couldn't get out of bed all day Saturday, as much as I tried to will myself to do so. On Sunday, I got up at 4 am and was able to psych myself up to go for a walk at noon. Walking on no incline and uphill/stairs were generally fine, although my feet were burning the more I walked, and my left leg felt stiff, as if I had a brace on my knee. But walking downhill, even on a very subtle decline, was...awkward. My left leg seemed not to know where to place itself on the ground, sometimes just swinging too far out in front of me almost uncontrollably. (One random funny/stupid thing is that as I was walking across a bridge, I was looking at another bridge across the way and saw two, and I thought for a split second about taking a picture of "them," thinking how nobody would believe that I was actually seeing two...I took out my iPhone and realized, oh, it won't see what I see. Oops.) I got a little rattled and came back home, exhausted.
I finally got a doctor's appointment yesterday and had blood taken to test for everything my psychiatrist prescribed (had to go to my GP because insurance wouldn't cover labs prescribed by my psychiatrist). Those include CBC, thyroid, thyroid panel, testosterone, free testosterone, lipids, and I'm honestly not sure what else. I am waiting for those labs. I also got my HIV test results last night (negative, thank God), and the doctor yesterday prescribed MRIs of my brain and C, T, and L spine.
With all that out of the way, I have one new scary thing to report and one big question on which I could use advice. First, the scary thing. I had to take the Metro (subway) to my doctor's appointment, and as usual the Metro escalator going down was broken. So, along with everyone else I walked down the stairs, no problem. Except it was a problem. By the tenth step or so I knew it was going to be a challenge walking down because my left leg wasn't coordinating very well. By the time I was halfway down (if you know the Dupont Circle Metro stop by any chance, it's a loooooooooooooooooooooooooooooooooooong escalator), my left leg was going absolutely crazy. It was just unstable, shaking more and more every time I tried to lift it and place it back down. I ended up just kind of pushing it from one step to the next and hopping down on my right foot, barely putting any weight on the left and supporting myself mainly with the handrail. I really thought I was going to fall down these stairs (http://cache2.allpostersimages.com/p/LRG/38/3882/NJYJF00Z/posters/reid-rich-escalator-at-the-dupont-circle-metro-station.jpg). But I made it. Obviously, I guess.
So now the question. The MRIs. I made appointments to have the MRIs done near my office. I called two radiology centers that my insurance will pay for, and neither has a 3T machine in the immediate vicinity; however, one has one about a half mile away and they told me I could reschedule my appointment to go there and use that machine. Should I reschedule the appointment for a more powerful machine? Kind people here have suggested that lesions not seen on a 1.5T machine could be found on a 3T, so it seems like common sense; on the other hand, the other radiology center is within close walking distance. I'd probably have to get my father to drive me to the one in Maryland because I've stopped driving recently because of my vision.
Sorry for taking up more space on this message board. Thanks for your patience with me.
My vision went from going blurry on and off to actual double vision last week for the first time ever. On my walk home from work on Thursday and Friday (about 1 mile), I noticed that my left leg would sometimes stiffen and sometimes feel like jelly, in both cases just below the knee and about six inches above it.
I couldn't get out of bed all day Saturday, as much as I tried to will myself to do so. On Sunday, I got up at 4 am and was able to psych myself up to go for a walk at noon. Walking on no incline and uphill/stairs were generally fine, although my feet were burning the more I walked, and my left leg felt stiff, as if I had a brace on my knee. But walking downhill, even on a very subtle decline, was...awkward. My left leg seemed not to know where to place itself on the ground, sometimes just swinging too far out in front of me almost uncontrollably. (One random funny/stupid thing is that as I was walking across a bridge, I was looking at another bridge across the way and saw two, and I thought for a split second about taking a picture of "them," thinking how nobody would believe that I was actually seeing two...I took out my iPhone and realized, oh, it won't see what I see. Oops.) I got a little rattled and came back home, exhausted.
I finally got a doctor's appointment yesterday and had blood taken to test for everything my psychiatrist prescribed (had to go to my GP because insurance wouldn't cover labs prescribed by my psychiatrist). Those include CBC, thyroid, thyroid panel, testosterone, free testosterone, lipids, and I'm honestly not sure what else. I am waiting for those labs. I also got my HIV test results last night (negative, thank God), and the doctor yesterday prescribed MRIs of my brain and C, T, and L spine.
With all that out of the way, I have one new scary thing to report and one big question on which I could use advice. First, the scary thing. I had to take the Metro (subway) to my doctor's appointment, and as usual the Metro escalator going down was broken. So, along with everyone else I walked down the stairs, no problem. Except it was a problem. By the tenth step or so I knew it was going to be a challenge walking down because my left leg wasn't coordinating very well. By the time I was halfway down (if you know the Dupont Circle Metro stop by any chance, it's a loooooooooooooooooooooooooooooooooooong escalator), my left leg was going absolutely crazy. It was just unstable, shaking more and more every time I tried to lift it and place it back down. I ended up just kind of pushing it from one step to the next and hopping down on my right foot, barely putting any weight on the left and supporting myself mainly with the handrail. I really thought I was going to fall down these stairs (http://cache2.allpostersimages.com/p/LRG/38/3882/NJYJF00Z/posters/reid-rich-escalator-at-the-dupont-circle-metro-station.jpg). But I made it. Obviously, I guess.
So now the question. The MRIs. I made appointments to have the MRIs done near my office. I called two radiology centers that my insurance will pay for, and neither has a 3T machine in the immediate vicinity; however, one has one about a half mile away and they told me I could reschedule my appointment to go there and use that machine. Should I reschedule the appointment for a more powerful machine? Kind people here have suggested that lesions not seen on a 1.5T machine could be found on a 3T, so it seems like common sense; on the other hand, the other radiology center is within close walking distance. I'd probably have to get my father to drive me to the one in Maryland because I've stopped driving recently because of my vision.
Sorry for taking up more space on this message board. Thanks for your patience with me.
Honey, I totally get it. Take my word for it, a mom of two who is married and dx with MS doesn't want to be disabled either. No one does.
What I do know is that attitude does matter. I am not saying is cures sickness but it definately does make a huge difference in how we get through the cr ap and challenges in our lives.
When I first realized I had MS I cried, cried and cried. I took long walks and cried on park benches so I wouldn't lose it in front of my kids. I had anxiety attacks, I hyperventilated, I couldn't sleep, etc. Physically I felt horrible. Lots of sx that I could not imagine having for the rest of my life. It was a dark time.
No matter what health issues we face, sooner or later, we all face them and we all freak out to one extent or another. It's normal. Allow yourself this measure of emotion. It's okay.
You will get through this I promise. No matter what the dx you will get through this. It will make you take stock of your life and what you want and I promise you will not take even the smallest thing for granted.
The reality is that MS (and we don't know that is what you have) is a totally different disease than it was a few decades ago. There are disease modifying drugs now that can help people live very normal lives. And I am hopeful there will be a cure in my lifetime.
I have lost people in my life who passed well before their time. None of them from an autoimmune disease. My life expectantcy is the same for a non MS'er and I am darn well not going to let this disease stop me from living a full life.
You have to start talking to your family and friends. It's important, I mean it. You cannot carry this alone. Don't let your mind carry you away to too many dark places when you don't know what you even have. You won't win that one. Put that energy into finding out what you have and getting better.
My symptoms went away, all of them but my heat sensitivity. I am on a dmd. There is nothing I cannot do now but spend too much time in the heat. Life is good. I didn't give up and you can't either.
So, you can feel sorry for yourself tonight but chin up tomorrow and find out what the heck is wrong and let your friends/family in on your struggle. Keep coming back here and let us know what the heck is going on so we can discuss, be mad, be happy or whatever else is appropriate.
You will be in my thoughts and prayers,
Julie
What I do know is that attitude does matter. I am not saying is cures sickness but it definately does make a huge difference in how we get through the cr ap and challenges in our lives.
When I first realized I had MS I cried, cried and cried. I took long walks and cried on park benches so I wouldn't lose it in front of my kids. I had anxiety attacks, I hyperventilated, I couldn't sleep, etc. Physically I felt horrible. Lots of sx that I could not imagine having for the rest of my life. It was a dark time.
No matter what health issues we face, sooner or later, we all face them and we all freak out to one extent or another. It's normal. Allow yourself this measure of emotion. It's okay.
You will get through this I promise. No matter what the dx you will get through this. It will make you take stock of your life and what you want and I promise you will not take even the smallest thing for granted.
The reality is that MS (and we don't know that is what you have) is a totally different disease than it was a few decades ago. There are disease modifying drugs now that can help people live very normal lives. And I am hopeful there will be a cure in my lifetime.
I have lost people in my life who passed well before their time. None of them from an autoimmune disease. My life expectantcy is the same for a non MS'er and I am darn well not going to let this disease stop me from living a full life.
You have to start talking to your family and friends. It's important, I mean it. You cannot carry this alone. Don't let your mind carry you away to too many dark places when you don't know what you even have. You won't win that one. Put that energy into finding out what you have and getting better.
My symptoms went away, all of them but my heat sensitivity. I am on a dmd. There is nothing I cannot do now but spend too much time in the heat. Life is good. I didn't give up and you can't either.
So, you can feel sorry for yourself tonight but chin up tomorrow and find out what the heck is wrong and let your friends/family in on your struggle. Keep coming back here and let us know what the heck is going on so we can discuss, be mad, be happy or whatever else is appropriate.
You will be in my thoughts and prayers,
Julie
I love you, juju. Honestly. And I love the Internet for giving me access to places like this. I am admittedly drunk on wine right now, but mainly because I am scared to death.
I'm 33, gay. All I've ever had going for me is words and my (limited, untrained) ability to paint, and I'm losing both because of...whatever. It's scary. I don't know what is going to be left of me if I become disabled.
I'm 33, gay. All I've ever had going for me is words and my (limited, untrained) ability to paint, and I'm losing both because of...whatever. It's scary. I don't know what is going to be left of me if I become disabled.
I am so sorry you are going through this. It does get better as you get answers and you become more familar with whatever it is you have. You never know, it may be something that is totally fixable and curable.
All I can say it let yourself feel the fear. You are only human. Can you share what's going on with your family and friends? Someone you can lean on?
Kind of scary is an understatement. Been there. No matter what you have there are lots of medical advances out there that can probably help you. And if it should turn out you have MS, there are a lot of us here to tell you it is possible to live a very normal life with it.
It will be okay. Just keep focusing on finding out what you have and let yourself be okay with being scared of the unknown. No matter what any of us have, ALL of our futures are unknown, even the completely "healthy" people walking around don't know what's around the next corner.
Hang in there and keep us updated.
Julie
All I can say it let yourself feel the fear. You are only human. Can you share what's going on with your family and friends? Someone you can lean on?
Kind of scary is an understatement. Been there. No matter what you have there are lots of medical advances out there that can probably help you. And if it should turn out you have MS, there are a lot of us here to tell you it is possible to live a very normal life with it.
It will be okay. Just keep focusing on finding out what you have and let yourself be okay with being scared of the unknown. No matter what any of us have, ALL of our futures are unknown, even the completely "healthy" people walking around don't know what's around the next corner.
Hang in there and keep us updated.
Julie
I walked to the grocery store this afternoon. Stumbled every time I reached for something on a shelf. Right now I am pretty drunk on a bottle of gewurtztraminer. I'm scared. Being 33, gay, single, drunk and Irish American and possibly having a debilitating disease is kind of scary. Even on antidepressants and klonopin.
So to hear that your insurance won't cover a 3T. Don't even get me started on insurance companies!!! ahhh!!
I'm familiar with the dc metro and so so so sorry you had to do all those stairs in dupont cir. I can't imagine doing all those stairs while having leg issues.
I wish you all the best! Good luck with the next MRI. Hope you can get some answers.
I'm familiar with the dc metro and so so so sorry you had to do all those stairs in dupont cir. I can't imagine doing all those stairs while having leg issues.
I wish you all the best! Good luck with the next MRI. Hope you can get some answers.
Okie dokie. Thanks for your feedback. My question, it turns out, was unnecessary: my insurance will pay for every radiology center that *doesn't* have a 3T. :( So I'll do a 1.5 again and hope something turns out. I'm really tired of this all being "anxiety."
COMMUNITY LEADER
Firstly 'freaking out' isnt going to be any help so do your best to keep your emotions in the cool zone! Some of this is scary and being anxious is more than understandable but you still need to find a way to keep it under control, the stress of it will just make it worse!
Secondly i'd find out from dad if he can take you and if he's ok i'd go for the out of town 3T.
Hugs..........JJ
Secondly i'd find out from dad if he can take you and if he's ok i'd go for the out of town 3T.
Hugs..........JJ
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