Why does my doctor say my syringomyelia is no big deal?

[PRC83]

I am a 35 year old female, five foot one, 100lbs. One year and a half ago I lost my ability to walk without moderate to severe pain. In a matter of 3 days I went from limping to having both legs so stiff and painful that I became unable to walk. I improved with rest some but still had terrible pain. When I walked I thought it must be coming from my knees. I picked the worst one, (money limitations) and had xray/mri and started PT, but after 4 months of it and crutches, I didn't improve. Any excursion made the pain severe again and I became unable to walk. Eventually I would have shooting pains down my legs, tingling and burning sensations, in addition to the chronic pain. The pain became severe in my tailbone and upper back as well, a severe pain and tightness. In the last month my arms and legs have begun to feel like their are weights on them if I have to move too much (I'm unemployed, unable to work and also not get disability) (I also have headaches and migraines following a concussion 3 years ago). I had to beg to be tested for various autoimmune diseases that came back negative and had failed steroid shots before my GP finally agreed to do an X-ray and MRI of my spine. He choose to do my lower lumbar, not my tailbone, where the pain is.  My GP said my MRI was fine, so desperate, I asked to see a neurologist to see if it was MS.  The neurologist said the MRI was not fine, I  have a syrinx, Syringomyelia, which would cause these symptoms. He did another MRI of my thoracic, but the cyst didn't go up any higher,so on the next visit, today, he did a 180 and said the cyst would give me no symptoms at all because I was born with it and it's not very big, and not all of my symptoms match. I said my brother is a paramedic and said to put down all my symptoms, like skin rash, nausea, but just because Syringomyelia doesn't explain everything doesn't mean we should just throw out something we found and matches the majority of my symptoms. Maybe I have 2 things. He wouldn't even entertain the thought. I feel like my hope of ever getting better has been yanked away. I have to be pushed in a wheelchair if we need to go more than a trip around the block. I want to get better so bad.  Has anyone else gone thru being told a cyst isn't doing anything, even though you have the symptoms? What should I do?  I am feeling hopeless and would appreciate advice from a doctor who specializes in syringomyelia or patients who may have been in a similar situation.  

Thank you so much,
Emily

[selmaS]

Hi Emily and welcome to MedHelp.

You may find more help in the Chiari forum since many with Chiari also have Syringomyelia.....
Do you know if your syrinx formed after a blunt trauma to the area?Or if it was due to a restriction to CSF flow due to a congenital condition?

https://www.medhelp.org/forums/Chiari-Malformation/show/257?new_forums_test=B