Still seeking HELP

[Red_Ruby]

I last posted here in March saying I did not have MS but was diagnosed with having Myelomalacia in my cervical spinal cord from my C2 to C6 levels caused from trauma .  I had a second opinion last month as I am getting worse and more symptoms.  The Professor of Neuro told me that I did have lesions but they where not caused by a trauma injury but it was myelomalacia.  How can one tell what a lesions is caused by?  Do they look different if it was MS to Myelomalacia?

Symptoms over the past 4 years: (not in any order) electric shocks, feeling of water running down my leg, leg, arm, shoulder, wrist and torso jerks, no spinceter tone in vagina and anus, bladder weakness, leg weakness, fatigue, arm weakness and pain, calf pain, pins and needles on 1/2 side of my face, pins and needles from middle of my back running down too my bottom like a water fall.  Lost eye sight twice for about 40 seconds each time.  Had two days of vertigo, requiring medical attention.  I was told by a After Hours Doctor it was a virus.  

He said I have hyperreflexia and I am off to major hospital in early Dec as he said they need to find out why I am getting these lesions for.  I earlier had MRI of brain plus full spine, it showed lesions on MRI with and without contrast.  But when no lesions showed in the brain they did not do a contrast MRI.  How do I get these guys to listen to me.  Lately I feel my eyes are needing to be constantly squinted as they feel funny and I have trouble with focus.  

I just feel scared and I want to make sure they find out what is happening to me as I need treatment.  Please let me know your thoughts on what I should do.

[Husbandadvocate]

even if MRI shows lesions it doesn't mean its from MS. My Husband has lesions in brain which they thought was MS, but just was diagnosed with Myelomalacia. Spent way too much time dealing with the MS specialists when could have been dealing with Myelomalacia and maybe stopping some of the progression. Good Luck

[Red_Ruby]

Hi Shell,

I have done a lot of research on the causes of spinal cord lesions and I have ruled out so many things that it could not be.  I have read that myelomalacia lesions can be mistaken for MS Lesions.  I want them to do another MRI of my brain this time with contrast so if there is small lesions in the brain they may be picked up.  I figure if they see lesions in the brain they may go back to their original theory that it may be MS.  I am seeing my GP tomorrow so I will talk to him about my arms.  He has contacted the Hospital before for me to speak with the Neuro's there.

I just want a right diagnosis made so I can have treatment if it is MS.  

[sllowe]

Welcome back, RoseAnne,

I sure wish I were expert enough to speak to your questions, but I surely don't know enough about the difference between one lesion to the next or how they differentiate them.  Bob may have a better understand of this and hope he can elaborate further.

One thing I can think of is calling the office you have an appointment with in December and describe what is going on currently with arm problem progression. Perhaps they would find a hole in the schedule and get you in sooner?  Just thinking off the top of my head. I sure hope this doc is as good as his reputation.

-shell

[Red_Ruby]

Thank you Lulu,

Yes four years is a long time indeed.  This new guy is a Professor and whilst he agree's with the other neuro that it is myelomalcia that is the cause of all my neurological issues they differ of the cause of it.  

I trust this Professor as he is well respected and so knowledgable. He has arrange for himself and I to meet with the head of the pain unit I attend to start to find out firstly why my spinal cord is going muchy and soft and then scarring.  

The symptoms are the same as MS that I have.  I have 5cm of scars from my C2 to my C6 in my dorsal column of the spinal cord.  I am scared as now my arms are going silly on me that this is progressing further as I had no trouble 6 months ago with my arms.

Do you or anyone else know how they can tell a lesion apart from a MS lesion to a Myelomalacia lesion?

Rose Anne

[Lulu54]

Welcome back, Rose Ann.  I'm sorry you are not closer to having answers.  Some of our folks here from OZ might have suggestions for you as to how to navigate your medical system.  

The symptoms you describe sound neurological in nature, and are supported by those lesions in your spine, perhaps.  Keep open to the possibilities and remember that early December is not far off.

Be sure to ask the new neuros to take this journey with you and not give up until there are answers.  Four+ years are four too many.
-Lulu

[COBOB]

Myelomalacia is a softening of the spinal cord that can cause bleeding inside the cord.  It is more like a "stroke" of the spinal cord. It can cause similar sensory and muscular symptoms to those seen in MS, but the symptoms are not related to demyelination.  The facial and sight symptoms do not sound like they are consistent with a dx of Myelomalacia.  Even in ascending myelomalacia, the cranial nerves are spared.  If you have lesions in your brain, that has nothing to do with Myelomalacia.

Bob