Sooooo everyone I saw my gp today he did the usual neuro tests, he was shocked how brisk my reflexes were and how weak my legs and arms were. Anyone else suffer from these? My legs sort of judder when i move them its weird i thought it was because id been resting alot more than usual maybe seized up abit?! haha aparenty not. Finaly he is now taking me seriously months later and now have been referred for a second opinion!
He let me read the notes from the radiologist and neurologist because ‘mine got lost in the post’. It turns out the spinal MRI findings were lesion t5-t9 of the spinal cord, 125mm vertically possibly syrinx or prominent cntral canal? can any shed any light on this jargon?
Firstly good news that your GP is on side - I’m so pleased
Secondly I’ll try to shed some light on what the MRI says but my knowledge is limited Karen maybe better placed here.
Here goes:
The central canal is the fluid filled space that runs the entire length of the spinal cord and connects with the ventricles (fluid filled lakes) in the brain. The fluid here is called cerebrospinal fluid (its the fluid thats usually drawn when you have a lumber puncture). Usually the canal is small or not that noticeable but what they seem to be saying here is the canal is prominent I think in the t5-t9 area (thoracic area). This can still be normal particulalrly if you have no problems or symptoms. However it can also be a sign of other things i.e syrinx (or syringomyelia). This is where you get a fluid filled type of sac develop due to a birth defect (like a chiara malformation) or pressure in your spinal cord, trauma etc.
You can have headaches, spasms and tightness in leg muscles, decreased sensation, weakness …etc as a result of this.
So it sounds like this is what they were quering but the spinal cord is difficult to scan so obviously they’re not a 100%. It certainly sounds like you need to see another neuro. I’m not an expert on syrinx but do the symptoms seem to ring any bells - they are similar to MS.
Didn’t the first neuro want to see you or do anything. I’m a bit puzzled - surely it may explain some of the symptoms you’ve been getting - though it is out of my medical knowledge remit so (hands up - I’.m no expert).
12.5cm is enormous in MS terms, so I doubt very much that this lesion is due to MS. I’m afraid I know a lot less about about syrinx than I do about the spine (which is not a lot!), but I remember looking it up once for someone else and I’m pretty sure it can be treated.
In which case, I really hope you put a formal complaint into the GMC about whatever neuro discharged you! Negligence as far as I’m concerned
Thankyou to you all for taking the time out to reply.
Reemz you have help me understand the mri alot more, there jargon baffles me. Yeah all the symptoms u have said i suffer from daily plus more. I am definately going to put a complain in Karen and Jacqui. She was very rude to me, even when i first met her in hospital when i was admitted.
She saw me once after i left, which i had to fight for month and months. Then she said its a dyfunctional disorder, probably all in my head and sent me home. since ive been fighting along side my gp to get the letter so he can send me else where.
Terrible ah? im used to this though, we have had many terrible neuro from dealing with my mums diagnosis of MS.
Thankyou to you all for taking the time out to reply.
Reemz you have help me understand the mri alot more, there jargon baffles me. Yeah all the symptoms u have said i suffer from daily plus more. I am definately going to put a complain in Karen and Jacqui. She was very rude to me, even when i first met her in hospital when i was admitted.
She saw me once after i left, which i had to fight for month and months. Then she said its a dyfunctional disorder, probably all in my head and sent me home. since ive been fighting along side my gp to get the letter so he can send me else where.
Terrible ah? im used to this though, we have had many terrible neuro from dealing with my mums diagnosis of MS.
I would certianly put a complaint in through pals. It really does sound like she shouldn’t have just brushed you aside the way she has. Did she even discuss your MRI findings with you? It baffles me. Either way she has delayed your treatment and rehabilitation if it does end up being a syrinx this has letigation all over it.
Either way I’d probably get onto to being seen by a neuro soon.
