Hi, my name is Jess, and I'm 29 and undiagnosed. I'm sorry if I end up writing a book below!
My symptoms started about 2 years ago. It was 4th of July weekend 2013 and we were hanging out by the pool with the inlaws when I started having spasms in my legs. Later that day I felt so weak and fatigued that I stayed behind while everyone else went to dinner and to see the fireworks. I just slept for hours and barely made it up the stairs. I remember having a feeling of vertigo when I lied down.
I saw my GP, a few neurologists, and my rheumatologist (fibromyalgia) over the course of the next year, and they ran lots of bloodwork and MRIs of my brain, C spine and T spine, but no one could tell me what’s wrong.
The weakness, spasms, pain and fatigue continued in my legs and then in my arms, along with tingling and some numbness too. It was a bit better in the fall & winter of 2013, but got worse again in the spring of 2014. At the time we were living in a townhouse and stairs were so hard to deal with that we had a new construction house built with the master & laundry on the first floor. I started to feel better around October 2014 and we moved into the new house in November.
I had a pretty decent several months until 6 weeks ago. It started back up again suddenly one day. The weakness, spasms, twitching, pain and fatigue, along with some tingling, is back and even worse. I have what I now understand to be spasticity, which is worse in my legs than my arms and worse on the left than the right. I think that is where my pain comes from. I feel like when I go to stand up that I have to make my legs straighten out. My husband says I've been sleeping curled up in a ball lately. It also makes my left arm and hand feel cramped up sometimes.
I have what my PCP termed gait abnormalities, which gives me trouble with walking. I am shuffling along pretty slowly and limping, dragging my left leg along. I feel unsure of my balance because of the weakness. I am also having some trouble with my grip and dropping things.
Previously I felt like the weakness and spasms were even on both sides, but with this latest flare-up the left side is definitely worse than the right. I saw neuro #4 last week and he said that since I can walk at all that it's not neurological. How does that make any sense?! lol
So I went back to my PCP and she ordered an MRI of my brain and C-spine. Those came back normal (I have the report and images). She also ran new bloodwork which doesn't show anything useful. I do have a CRP of 10.1 but negative for RA & Lupus. I asked her about re-checking my vitamin D and B12 and she doesn't think that would cause symptoms this severe. I am inclined to agree.
I was also diagnosed with inappropriate sinus tachycardia 3 years ago, which worsened during my flare-up last spring and my medication had to be increased. I have a feeling that it is related. Not sure if this is related but lately 1-2 times a day on average I've felt like I haven't been fully emptying my bladder.
My illness is no longer invisible and co-workers keep asking me about my limp. I am clumsy so I tell them I hurt my leg, but I don't know how much longer that excuse will get by without more questions. I work with computers and am usually just behind a desk, although my left hand is giving me trouble sometimes with stretching to reach the farther keys when typing. Sometimes my job requires moving servers or other equipment, and I am able to get someone to help me with that. But being on my feet for more than a few minutes running cables and stuff has become pretty impossible.
I have been having cognitive and memory issues, forgetting words, spacing out in the middle of a conversation, having a hard time concentrating and problem solving,which is having an effect on my work.
I am waiting to see neuro #5 August 4th. He specializes in neuromuscular disorders so hopefully it will be worth the wait.
I am fortunate to have a supportive husband and family. I don't really have a question but just wanted to vent and get all of that out there. Thanks for reading!
My symptoms started about 2 years ago. It was 4th of July weekend 2013 and we were hanging out by the pool with the inlaws when I started having spasms in my legs. Later that day I felt so weak and fatigued that I stayed behind while everyone else went to dinner and to see the fireworks. I just slept for hours and barely made it up the stairs. I remember having a feeling of vertigo when I lied down.
I saw my GP, a few neurologists, and my rheumatologist (fibromyalgia) over the course of the next year, and they ran lots of bloodwork and MRIs of my brain, C spine and T spine, but no one could tell me what’s wrong.
The weakness, spasms, pain and fatigue continued in my legs and then in my arms, along with tingling and some numbness too. It was a bit better in the fall & winter of 2013, but got worse again in the spring of 2014. At the time we were living in a townhouse and stairs were so hard to deal with that we had a new construction house built with the master & laundry on the first floor. I started to feel better around October 2014 and we moved into the new house in November.
I had a pretty decent several months until 6 weeks ago. It started back up again suddenly one day. The weakness, spasms, twitching, pain and fatigue, along with some tingling, is back and even worse. I have what I now understand to be spasticity, which is worse in my legs than my arms and worse on the left than the right. I think that is where my pain comes from. I feel like when I go to stand up that I have to make my legs straighten out. My husband says I've been sleeping curled up in a ball lately. It also makes my left arm and hand feel cramped up sometimes.
I have what my PCP termed gait abnormalities, which gives me trouble with walking. I am shuffling along pretty slowly and limping, dragging my left leg along. I feel unsure of my balance because of the weakness. I am also having some trouble with my grip and dropping things.
Previously I felt like the weakness and spasms were even on both sides, but with this latest flare-up the left side is definitely worse than the right. I saw neuro #4 last week and he said that since I can walk at all that it's not neurological. How does that make any sense?! lol
So I went back to my PCP and she ordered an MRI of my brain and C-spine. Those came back normal (I have the report and images). She also ran new bloodwork which doesn't show anything useful. I do have a CRP of 10.1 but negative for RA & Lupus. I asked her about re-checking my vitamin D and B12 and she doesn't think that would cause symptoms this severe. I am inclined to agree.
I was also diagnosed with inappropriate sinus tachycardia 3 years ago, which worsened during my flare-up last spring and my medication had to be increased. I have a feeling that it is related. Not sure if this is related but lately 1-2 times a day on average I've felt like I haven't been fully emptying my bladder.
My illness is no longer invisible and co-workers keep asking me about my limp. I am clumsy so I tell them I hurt my leg, but I don't know how much longer that excuse will get by without more questions. I work with computers and am usually just behind a desk, although my left hand is giving me trouble sometimes with stretching to reach the farther keys when typing. Sometimes my job requires moving servers or other equipment, and I am able to get someone to help me with that. But being on my feet for more than a few minutes running cables and stuff has become pretty impossible.
I have been having cognitive and memory issues, forgetting words, spacing out in the middle of a conversation, having a hard time concentrating and problem solving,which is having an effect on my work.
I am waiting to see neuro #5 August 4th. He specializes in neuromuscular disorders so hopefully it will be worth the wait.
I am fortunate to have a supportive husband and family. I don't really have a question but just wanted to vent and get all of that out there. Thanks for reading!
~Brittan~
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