First diagnosed w/rare MS

[deborah0904]

Well, on Nov. 17th I was told by a leading MS specialist that I have a rare form of MS and would have to go out of state for treatment.

My insurance company wouldn't preauth me to go out of state until I saw another specialist in my state.  They wanted a confirmation that I indeed have a rare MS.  I went to the 2nd leading MS Specialist and he disagreed w/1st Dr.  Now, I'm in limbo AGAIN!!!!  He said he thought I have a 50% chance of having MS and 50% chance of having a spinal cord injury/compression.

I had another MRI, this time a C-spine w/contrast.  Report shows Subtle area of increased signal within the central aspect of the cord.  Subtle amorphous increased attenuation noted on the short axis T1 weighted post contrast series.  No change in the caliber or contour of the cord, with otherwise normal signal and enhancement characteristics of the spinal cord (as well as all visualized brain and brainstem structures within the field of view).
Notes: Subtle cord signal changes noted at the level of C-7-T-1 are suspected to represent artifact, being along the peripheral edge of the field of view.   ***I'm not sure what all this means.****

I had alot of other problems with my MRI such as degeneration, etc.  C5-6: Degenerative radial expansion of the disc again noted, with undulating posterior disc margin creating slightly greater encroacment upon the left anterolateral surface of the cord.   Sounds like this would cause some arm problems.  

Anyone care to comment?  Sound like MS or just problems w/spine?  Thanks.

[Wobbly]

yes, you and I are in very simular situations.... the MS specialist will not give me a Dx yet...she says it's possible to have a Rare MS...but doesn't say much more then that and want me to have more tests done.  I'm still waiting for a full spine MRI.. have you had all the test done with Neuro 1...?  I myself would call Neuro 1 and ask them to speak with Neuro 2...don't know if they will??  

this is not a fun place to be in..I know.. but you do want the Right Dx..because treatments are different.  Now, my specialist...says she doesn't think it's MS?  but, she know something Neuro is wrong?  So, she said it could end up being a rare MS?  

see, I have way to many symptoms that mix things up and confused the Dx.. seems like each time I get a test done, they say...WELL, what do we have here??  It gets more confusing to the Drs. and myself..

so good luck with this decision. Keep us updated on what happens.
take care
wobbly
undx

[deborah0904]

I'd rather go back to Neuro #1 who dx'd the rare form of MS.  I'm tempted to call his office and ask the nurse to see if he would be able to consult with another physician out of state since insurance won't approve me to go out of state.  If he could consult with someone, maybe they could help him to know which way to go.  Neuro 1 says he wouldn't treat the MS if that is indeed what I have.  I can't imagine not treating MS.  What in the world?  

My husband would rather me stick with Neuro #2 who gave the 50/50 opinion.  I think my husband means well and to him that takes away some of his fears. He doesn't want me to have the worst dx but we all know that you can't just sweep things under a rug and make everything better.  
Yes, I feel like I am playing a game of pick and choose.  

[Lulu54]

So who is your next appt with?  Neuro #1 or #2?  This sounds like a game show and you need a third curtain to pick from.  With all of your symptoms and the #1 neuro DX I would trust it doesn't just stop here.  A 50/50 dx from #2 is no dx at all in my opinion.  

Whatever is going on, and a lot of your symptoms sound similar to MS, a doctor needs to investigate and decide on a course of treatment.  

I'm no medical expert so can't help with all the termiinology from your MRI report -

stay in touch,
Lulu

[deborah0904]

I'm really not sure what Tesla strenth this was.  It was an open MRI.  My report says
T1 and T2 weighted images as well as gradient echo images.  Not sure what that means.  I had my MRI on a Friday and was called on Monday that I needed to go to one of their other locations which had a stronger machine.  My understanding is that the increased signal was confirmed on the 2nd MRI.

Actually, I have alot of things on the report that sound like they may could cause somme problems.  I have thinning of the anterior dura mater/tectorial membrane complex with intact posterior dura mater/posterior atlanto-occipital membrane complex in the CO-C1 area.
C1-C2 has  stable hypertopyy of the atlanto-odontoid articulation.  Stable, smooth, noncopressive posterior disc displacement.
C3-4 has stable noncompressive posterior disc displacement
C4-5 has stable concave posterior disc margin w/slightly greater unconvertebral joint hypertrophy on the right, creating slightly greater encroachment upon the origin of the right lateral canal.  Clinically significant encroachment upon the C5 nerve rootlet may present with diminished eeltoid and pectoralis reflexes, motor weakness of deltoid muscle as well as para and hypesthesia of the shoulder.
C5-6 Degenerative radial expansion of the disc with undulating posterior disc margin creatin gslightly greater encroachment upon the left anterolateral surface of the cord. Uncovertebral joint and facet hypertropyy noted, relatively symmetric in character.  Clinically significant encroachment upon C6 nerve rootlet may present w/diminished biceps and brachioradialis reflexes, motor weakness to forearm flexion and para and hypesthesia of upper arm, thumb and radial forearm.

C6-7 Similar degree of degenerative radial expansion of disc.  No marked stenosis.  Uncovertebral joint and facet hypertrophy results in moderate to high-grade biforaminal narrowing, relatively synmetric in character.

C7-T1  is what I submitted earlier.  

My symptoms range from: arm weakness, pin prickling sensation in arms, fingers, hands and sometimes neck.
chin tingling/numbness on right side.
Memory problems/Depression
Loss of Bladder control/loss of bowel control at times
Muscle stiffness/spasticity
Reflexes are HIGHLY hyper in the chin and knees.  Not sure about arms.
Heat increases symptoms
Vertigo which was not caused by inner ear
Sometimes I feel as if I'm falling out of my chair
Loss of balance
?Leg weakness/have to walk with cane
Cannot walk any length-have to use wheelchair when shopping
Visual Evoked Potential had problems.  Not sure what word to use here.
I have alot of problems trying to find right words to use.  
I have alot of other problems too many to number.

Thanks for your help.

[jensequitur]

Deborah, what are your symptoms?

From what you've said here, it doesn't sound like you have enough problems with your spine to cause neurological symptoms.  That increased signal could be a spinal lesion - what Tesla strength was your MRI done on?

[doni54]

Hi Deborah,

It's one thing to be dx with MS, but to have the dx taken away is just the worse thing.

I'm not a dr so I really can't tell you whether it is MS or spine problems.  Are you going back to your first neuro with these findings from the 2nd neuro?  I would want some good answers to what is happening.

If you do have MS then you need to start on a DMD to slow down any progression.  One of these neuro's is going to have to decide whether it is MS or not.

I wish you the best and hope that you get a definite answer soon.

Take care,
doni