Have a few questions... starting to feel like I'm crazy...
Hi everyone. I am 33, mother of two little boys. My husband is active duty in the Air Force. Everything was fine and normal until March 31st of this year. That is when it ALL started.
I started to get a slight headache, and then my vision went in my left eye only. It slowly went from the outside in. I could see only a small opening in the center of my vision (tunnel vision?) for about 20 minutes or so. Then, the center opened and it slowly went away. After that, I was very dizzy, lightheaded, weak and fatigued. It was evening, so I went to lay down in bed, thinking I could sleep it off, whatever it was. Right before I went to sleep, my left wrist was hurting.
The next day I woke up and had the same lightheadedness, dizziness that would come and go, pain in my left arm, overall weakness and fatigue. I finally went to the ER that afternoon. They got me right in, ran tons of tests (CT scan, blood, urine, EKG, etc.) and said nothing showed up, but they thought it was neurological and I needed to follow up with my primary Dr. and put in a referral to see a neurologist.
I saw my primary Dr. 6 days after the initial 'episode'. She got me right in for an MRI of my brain. She called me later that day and said there were two 'flares of hyper intensity' that explain my symptoms, but they don't know what is causing it. Then I am told to see the neurologist again, but don't get in to see him for my initial visit for about 3 weeks. My initial symptoms (weakness/pain in left arm, overall fatigue, weakness, dizziness, etc.) only lasted about two weeks (it was really bad for those two weeks), then it got better. It didn't go away completely, it just wasn't as intense.
Neurologist has run a TON of tests on me, all of which I am not sure I would remember to list, however, he has ruled out a LOT of things, but MS is still on the radar. I have seen the opthalmalogist (not until 4 weeks after the vision loss) and he said there was no evidence of ON, my eyes were healthy and I had 20/20 vision.
I have seen a cardiologist, did an ECHO with bubble study to find I have a PFO, but they said that is unrelated to what is going on. I have had VEP, which they said came back normal. I also was evaluated by a balance center here in town, where they did lots of tests to see where my dizziness is coming from (since it comes and goes and there isn't anything that triggers it) and they said it is coming from within my CNS. I am going to physical therapy weekly for my dizziness. Finally, this past Tuesday I had a LP. I am just waiting to hear the results on that.
More recently (like the last three weeks or so) my symptoms have changed a bit, I now have a lot of muscle twitching, pain & tingling. It is everywhere. It is so bad that some nights I can't sleep. I am not sure what to do about this, but it is very annoying. I have not had one day go by, since this all started, where I felt 'normal', like I used to feel.
Every single day it is something. Sometimes I have a hard time saying certain words, or putting together a sentence (which is SO not like me!) I have a hard time concentrating and I get irritated very easily. I was quite emotional last week, three days in a row I was crying uncontrollably (which is NOT like me at all) and I was just at my wits end. Now, looking back, I am not sure what that was. I am starting to get used to the dizziness (how sad is that) and I am not sure if the physical therapy is helping or not. Some days it is worse than others.
I am sure I forgot to add some stuff, and I apologize if this jumps around too much, but I would love some imput on a few things. I honestly feel like I am going crazy. Some days I feel ok (not great, but ok) and some days I feel just awful.
What if they find NOTHING from my lumbar puncture? I am also wondering in what order has everyone else done some of these tests? I was expecting an MRI of my spine, or one with and without contrast, but that hasn't happened yet.
Any input is appreciated. I know a lot of you understand what I am going through. I feel like I don't have anyone to talk to about all of this. Thanks so much.
I started to get a slight headache, and then my vision went in my left eye only. It slowly went from the outside in. I could see only a small opening in the center of my vision (tunnel vision?) for about 20 minutes or so. Then, the center opened and it slowly went away. After that, I was very dizzy, lightheaded, weak and fatigued. It was evening, so I went to lay down in bed, thinking I could sleep it off, whatever it was. Right before I went to sleep, my left wrist was hurting.
The next day I woke up and had the same lightheadedness, dizziness that would come and go, pain in my left arm, overall weakness and fatigue. I finally went to the ER that afternoon. They got me right in, ran tons of tests (CT scan, blood, urine, EKG, etc.) and said nothing showed up, but they thought it was neurological and I needed to follow up with my primary Dr. and put in a referral to see a neurologist.
I saw my primary Dr. 6 days after the initial 'episode'. She got me right in for an MRI of my brain. She called me later that day and said there were two 'flares of hyper intensity' that explain my symptoms, but they don't know what is causing it. Then I am told to see the neurologist again, but don't get in to see him for my initial visit for about 3 weeks. My initial symptoms (weakness/pain in left arm, overall fatigue, weakness, dizziness, etc.) only lasted about two weeks (it was really bad for those two weeks), then it got better. It didn't go away completely, it just wasn't as intense.
Neurologist has run a TON of tests on me, all of which I am not sure I would remember to list, however, he has ruled out a LOT of things, but MS is still on the radar. I have seen the opthalmalogist (not until 4 weeks after the vision loss) and he said there was no evidence of ON, my eyes were healthy and I had 20/20 vision.
I have seen a cardiologist, did an ECHO with bubble study to find I have a PFO, but they said that is unrelated to what is going on. I have had VEP, which they said came back normal. I also was evaluated by a balance center here in town, where they did lots of tests to see where my dizziness is coming from (since it comes and goes and there isn't anything that triggers it) and they said it is coming from within my CNS. I am going to physical therapy weekly for my dizziness. Finally, this past Tuesday I had a LP. I am just waiting to hear the results on that.
More recently (like the last three weeks or so) my symptoms have changed a bit, I now have a lot of muscle twitching, pain & tingling. It is everywhere. It is so bad that some nights I can't sleep. I am not sure what to do about this, but it is very annoying. I have not had one day go by, since this all started, where I felt 'normal', like I used to feel.
Every single day it is something. Sometimes I have a hard time saying certain words, or putting together a sentence (which is SO not like me!) I have a hard time concentrating and I get irritated very easily. I was quite emotional last week, three days in a row I was crying uncontrollably (which is NOT like me at all) and I was just at my wits end. Now, looking back, I am not sure what that was. I am starting to get used to the dizziness (how sad is that) and I am not sure if the physical therapy is helping or not. Some days it is worse than others.
I am sure I forgot to add some stuff, and I apologize if this jumps around too much, but I would love some imput on a few things. I honestly feel like I am going crazy. Some days I feel ok (not great, but ok) and some days I feel just awful.
What if they find NOTHING from my lumbar puncture? I am also wondering in what order has everyone else done some of these tests? I was expecting an MRI of my spine, or one with and without contrast, but that hasn't happened yet.
Any input is appreciated. I know a lot of you understand what I am going through. I feel like I don't have anyone to talk to about all of this. Thanks so much.
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