what is this disease?

[litlady]

Hi! This is a request from London, UK. I have been seeing a Neuro for the past year, but still have no positive diagnosis. Can anyone help, please? Sysmptoms are increasingly worring and are gathering pace. I am unable to feel either of my legs, but can just about walk. My arms are going the same way, as my hands are already numb. I have the tingling for a few days, then burning, then - nothing, they're numb. I can only feel parts of my head, hips and shoulders, which are hyper-sensitive. I am loosing the ability to hold things in my right hand, and have muscle spasms in my hands & toes. MRI's have confrimed the spinal cord is displaced in 2 places in my neck, but my neuro has told me to come back in 6 months! Unbelievable! I am now experiencing brain 'flashes', of not recognising my whereabouts, and being unsteady on my feet,. This cannot go on.... Is there anyone out there who has any idea as to what is happening tom me? Any help gratefully received!!

[Billsdaughter]

Can you go to an ER with these worsening symptoms thereby having a different doctor see you? keep pressing for treatment and good luck.

[campverdegirl]

Hi, I live in northern arizona, USA. I am experiencing the same type of things. It is very scary, frustrating, and sometimes feel helpless. Feb. 2007 I was DX with Syringomyelia - it is a synrx located inside the spinal cord (fluid filled cyst). I Had a MRI (3T - most powerful one out now and they now say it is myelomalacia go figure. Seems all you ever get is the run around. Anyway, I will pray for you, and that you get answers and relief. Has any doctor talked to you about Cebral Spinal Fluid Flow - I know my does not flow correctly and I get tremendous headaches and numbness throughout the body. I feel like I am drunk or really strange, my skin feels as if it is crawling, my head as if someone is sqeezing it in a vice, my mouth gets really dry, and nausious. I hope you can find some answers. You might ask you doctor to check any of these above I mentioned. I am not a Doctor only a patient with a lot of the same questions. God Bless You may you find a good doctor that will listen to what you have to say and be willing to work with you. I am still looking for the right one. Thanks Christi

[litlady]

Would love to, but its not that easy over here. Medical protocol is such that one doctor will not tread on anothers toes. Despite the seriousness of my condition, my GP just will not refer me to another specialist. Any other ideas?

[sdrinkard]

Find a new doctor, and fast.  This one is not on your side.  Good luck.