Old 11-30-2016, 01:05 AM #1 (permalink)
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Default Just looking for support. Does anybody have Cerebral Palsy AND MND?

I don't know if I have ALS or some other MND, but my doctor mentioned ALS at my last appointment because my progression now indicates both upper motor neuron and lower motor neuron degeneration based on my hyper reflexes, clonis, fasiculations and tremors.

Here is my backstory:
I was a breech 28 week premie and got cerebral palsy due to complications at birth, but it was very mild and just affected my left arm and leg primarily. After surgeries and AFOs as a child, I was walking unassisted until October. I had some spastic hyper reflexes but it was primarily the left side. Now, I have a LOT of bouncing reflexes on both sides of my body. I thought I may have sprained or possibly stress fractured my left foot (which I am prone to due to the tightness and weakness from the cp) but my podiatrist noticed my weird loss of sensation in my feet and legs wanted me to get to a neurologist ASAP for an MRI. I thought maybe my back was just out or that I hadn't recovered as well from having my third baby and that was why my legs felt heavy and sometimes numb and tingly. I had also been having weird tingling, burning, numbness in my left arm. Before I could get to the MRI, after being in a hot room with my children one morning I began having a LOT of tingling on my left side and I was very weak and clumsy. My friend drove me home and I fell trying to walk inside. My husband took me to the hospital because we thought I was having a stroke. I couldn't smile right and my leg was numb. My left side was incredibly weak. I stayed in the hospital for 4 days. CT, brain MRI w/ and w/o contrast, MRI of C- spine and T-spine were all clear. (But, I wonder if they missed something because CP is brain damage and I think that should have showed up??).
Since getting out of the hospital I am primarily in a wheelchair. In the past couple of weeks I've began having fasiculations and tremors. When I stand up my arms and my legs shake. I've had random bouts of slurred speech when I'm tired and tonight my face and my tongue are twitchy and weird.
I was told I have Autonomic Nervous System Dysfunction and POTS (I get tachycardic when I stand up and the blood pools at my feet and I have passed out once). The cardiologist ruled out anything actually to do with my heart, it's my nervous system.

She said I present like somebody with MS, but there were no plaques on my brain and now that things are affecting my arms AND my legs she said not many diseases do that, and now we need to rule out ALS. and so I'm getting an EMG December 14th and I'm really, really hoping I don't have ALS.

I'm also trying to get into Mayo clinic.

Can anybody offer any advice, encouragement... resources? I'm so frustrated and scared. This thing with my tongue tonight has me FREAKING out.

Thank you! <3
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Old 11-30-2016, 01:44 AM #2 (permalink)
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Default Re: Just looking for support. Does anybody have Cerebral Palsy AND MND?

I forgot to add I also have atrophy in my calves. I used to just have atrophy in my left leg due to my CP but I have noticed it in my right leg as well. I also have general weakness in my hands, I was dropping my fork and pencil and I can't write very well anymore.
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Old 11-30-2016, 03:58 AM #3 (permalink)
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Default Re: Just looking for support. Does anybody have Cerebral Palsy AND MND?

This site is a huge resource that you can use as needed.

At the top of this forum section is a post titled READ BEFORE POSTING. It's a wonderful resource and we took a lot of time to write it clearly. It is our official position. I do feel it addresses your question.

I must admit on first read I felt a bit like I had to give a bit extra leeway to you because you have been through so much with the cp. Then I realised, hang on - cp has nothing to do with ALS, so throw that bit out and just read the new concerning symptoms as tho an otherwise healthy active person were reporting them.

This was the key - there is nothing that would suggest ALS in what is happening with you. I truly hope they figure things out fast for you.
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