monster

Sucks to hear you're not doing better. I noticed you mentioned a perineural cysts that extends the entire length of your spine, did I read this right? I have a similar condition at the top of my spine called a syrinx. It is very small, but I did speak to some experts who agree that it could be causing some of the symptoms. In reading about perineural cysts and Syringomyelia, I learned that they can cause a lot of pain. Research Syringomyelia and see with your doc how that is different from the peripheral cysts you have... Perhaps that could explain the symptoms you are experiencing.

Hi monster, how are you doing? I've been on this forum for about 4 yrs and i have been undiagnosed for about 7 years now. I have another appointment with my neurologist in July to get evaluated and share my new symptoms with him. It has been 3 yrs since i last had an emg and i think it might be time to get another one to see if it shows anything. It's such a stressful journey to be undiagnosed for so long and at the same time trying to keep up somewhat of a normal life. How are you, your symptoms? Did anything stabilize? For me this started at the age of 31, I'm now 38. It's sad when I think back at the past 7 years and realize the pain/agony/anxiety this has caused. Cheers, Matt

No diagnosis still, EMG doc only checked one muscle said only upper motor neuron/CNS problem. Have developed gastroparesis and swallowing problems. Seeing a gastroneurologist now he is thinking bulbar problems.

All I know is I have the SPG11 Mutation and was considered for HSP11, but for whatever reason they say I have another mutation on a different gene they are checking out. I noticed my symptoms back in 2011. My family and ex-wife noticed problems a couple years before I did.

I have a lot of spacisity, clonus, and weakness in my left hand and leg.

Have you been told anything about the SPG11 mutation and how it plays into ALS?

Have you been diagnosed yet. I have questions about your SPG11 mutation. I have that mutation and am currently being evaluated at the National Institute of Health. They don't think I have HSP, but still testing. I do have cerebral atrophy. Look forward to hearing from you

Thanks. I truly appreciate the support. They just won't tell me any of the other things it could potentially be. Having a really difficult time right now.

Thanks. I've noticed (firsthand) that some people get very frustrated when the "undiagnosed" troll this forum. My situation is extremely odd as I started with fasics prior to clinical weakness. Everyone said BFS until my EMG and neuro stated otherwise. Then it was cervical myelopathy because of an abnormal c-spine MRI...until a neurosurgeon said there is no ventral nerve root compression. Now, it leaves ALS. I can't be formally diagnosed yet because I only have one area of involvement (need 3). So I'm told to wait until I get worse...all in 3 weeks! Sounds fun, huh?