Still waiting for proper treatment

[Red_Ruby]

I was here 12 months ago awaiting to have a scan, after I had a Brain and Full Spinal Cord MRI, the Neurologist told me I had myelomalaycia of the spinal cord from a car accident.  Three months after that I was told by another Neurologist that the lesions on my Dorsal Column are not consistant with trauma and we need to find out what these lesions are caused by.  Two conflicting diagnosis's?  I am now having another MRI next week and my new Doctor is organzing also a spinal tap.  Hooray at long last someone is looking into my problems.  I am now incontinent, back to having electric shocks in my body again and for the first time I am having real bad pain in my thigh at the front of the the right leg.  Amazing pain.  

Last month I could not use both legs or arms as I had such terrible pain in the bones and muscles of all four limbs at once.  Is this common with MS?

I just feel so distraught at times as I am in so much pain, and fustrated by how long I have had to wait for someone to actually listen to me.

I am on 10 mg oxycontin morning and night, endep 10 mg at night, anti inflammotory brufen 400mg 3 times a day, endone 5mg when required for break through pain.  Panadol every six hours and I still have uncontrolled pain at times.    I know we all struggle but it can be so hard when you feel you know what is wrong with you and you are not even on the right medicine to help you.

[LisaJF]

Finally!  That's all I can say!  Good for you to get things on the ball again.  I'm glad someone is listening to you -- instead of being lazy and relying on one diagnosis that was dismissed by the neurosurgeon.

Please do let us know how things go!

Lisa

[Red_Ruby]

Hi Shell,

Long time since I have been on line and back here at Medhelp.  The Neuorsurgeon is a professor and I had seen him for a second opinion.  He tells me I dont have myelomalaycia and refered me back to the Neurologist who said I did.

I got a referal to see a Physcian who my husband sees for his health issues.  The Doctor agrees I have all the symptoms of MS.  He is waiting to see the results from my MRI of the full spinal cord, then ordering a brain scan.  Plus he is doing a spinal tap.    I will soon get t the bottom of this.

Currently I have been having electric shocks in my arms and legs on my right side.  I had these in late 2008 and they went away as quick as they come.

Shall let you know what happens.

Roseanne

[sllowe]

Hi there,

Welcome back! I so feel for you! So much pain in what you describe.

Question for you - have you been seen by a neurosurgeon? Or, are these both neuro's? Asking because if it were me, and I were faced with these two scenarios I would find a top neuro surgeon to provide the clarifying dx and instances of myelomalaycia or other problems associated with the accident.

In the states it's not always easy maneuvering the system when accidents and insurance enter the situation. At times it straps patients ability to get to varying docs..

Hope to help,
-Shell

[figuerpa]

Rose Anne,

sounds like you are going through the ringer right now and I hope this new neuro gets to the bottom of what is going on. I agree with Alex and that its not typical of MS to affect all four limbs at the same time. However I really hope you get get some relief and some answers.

I hope that the new neuro is at least treating your symptoms to try to help give you the relief you deserve. I know you are at your wits end I think we have all been there at some point or other.

Alex posts alot of things that helps me get through the tough time like how she fights through it with a positive, (well as positive as you can be) attitude.


Remember that we are all here for you for the support aspect of what you are going through. We may not always have the answers but know that we care.

Take Care,
Paula

[HVAC]

Rose Anne I hear your frustration. I am so sorry you are going through all this. Believe in yourself and what your body is telling you. May be the LP will show something. Some times is does not mine was what gave me my diagnosis. I was like you so frustrated with all the tests and Doctors.

Keep the faith. I can't tell you an answer will come easily sometimes it does not. We humans are comp,ex creatures. We care.

Alex

[Red_Ruby]

Thank you for your answer. I had seen my GP and he said this was my Thyroid causing this trouble.  
I just had last week another MRI (waiting on results) and my Physician is doing a spinal tap for MS.  I have had vision trouble, vertigo, pins and needles on half my face, jerking limbs,electric shocks, trouble swallowig, voice changes, feeling of having water running down my legs, fatigue just to name a few. Plus chronic low back pain with no specific cause.  I also am hyperreflexia and am inconinent wth my bowel now.  Just tired after 5 years of dragging myself to Doctors for help.

The pain my body is at times is so bad that I get low and feel suicical as I am fustrated with n being diagnosed as yet.
Thanks for caring to answer my post.  Rose Anne

[HVAC]

Hello you are going through a lot. I am not a Doctor. Pain in the bones in both arms and legs does not sound typical of MS because MS usually effects one side or another and not all four limbs equally. For example I started with double vision in my left eye, then vertigo toward the left, then forty years later numbness of the left arm, then pain in the left calf which went away, then sensations in my right foot, then pain in my right arm, then double vision in the right eye, now ON is the right eye. Nothing is equal on either side.

I hope they figure it out is sounds awful for you. Let us know.

Alex