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TotallyDisgusted1 posted:
Hi Kim, I have a question, I was diag. 9\2010 after a long ride on the doctor guessing trail. I have one lession in my right temporal lobe and have had it for 10 plus years with no change in size or inhansement, also no new lessions. My symptoms are much worse, I just had a MRI c-spine and thoracic spine.

I expected it to light up like a christmas tree based on how I feel, both were negitive. (can't understand this).

I wen't over the MRI with my neuro. and asked if the MS diag. could be wrong, he replied no it is correct, he said, lessios could be very small and could not be pick up on the MRI. ( Is this correct?)

My next question was ok, so with no new lession that can be seen does this mean less disability later on, he said yes.

I don't know what to beleive any more, I'm tired of this masquerade party that this disease thinks it at.

Spelling is not my strong point, sorry.

Thanks.

-Rob
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hackwriter responded:
Dear Rob,

Your doctor is right about MRIs not picking up small white matter lesions and inflammation. You could also have gray matter damage that MRIs cannot detect.

And so, a detectable lesion load can have little to do with your degree of disability. It's all about location. I've had the same three lesions for ages with no enhancing lesions or enlargement for over ten years--yet my disabilities worsened to the point where I had to retire on SSDI.

One theory is that I'm getting zapped in the same places where damage already exists. My lesions are mostly in the cervical spine where motor, sensory and bladder/bowel functions are controlled. And, inflammation can be going on constantly in the background while our autoimmune systems may fight to repair damage successfully for a long while--until it can't any longer and our symptoms worsen.

It's certainly natural to want to see a clear cause for our symptoms and try to prognosticate about our future disabilities. But we simply don't have the technology available in our mainstream clinical environment yet to capture images of all that is happening in the CNS, and science is still working to discover early indicators that might provide clues to our disease progress.

Over time, I've simply stopped putting too much stock in MRI results and focused on symptom management instead. It saves a lot of frustration, for sure.

Kim
 
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TotallyDisgusted1 replied to hackwriter's response:
Kim,

Thank you so much. I'm just so tired of this, as I'm sure everyone with this is.

Thank you again for being here.


-Rob
 
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jvez3 responded:
hello i can totallyunderstand what you are going through, i have been going through this for the past 7 years, , but in the last 2 years more systoms,but no more new lessions everytime i go to the dr, he keeps telling me beniign ms, i have stopped working one of my part time jobs, and i am in therapy to help me walk better using my cane,it is so frustratring, i was looking to see if anyone else was having the same problem as me ,and could relate to what you are saying thankyou for sharing this has helped me understand much better,
 
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mmthlvr responded:
Totally understand & sorry your going through this. In '05 my dr suspects MS. Negative MRI subject dropped. '08 more symptoms another MRI, 2 lesions rt frontal lobe. Go through every test possible, no dx.

This goes on for 2yrs, 5 Drs. June '10 more MRI'S, 6 possibly 8 lesions, rt frontal lobe, Diag RRMS. No change in my MRI over the last 2 yrs. Findings are always demylenation ,MS.

The last MRI in Aug, 10 lesions, rt frontal lobe. No change from previous MRI'S, demylenation but not classic of MS WTF???

I asked my Dr what the heck does that mean. She said it's just how it's read, still have MS. I'm convinced the only people that know anything about this disease are those of us who have it.

I was also told even though my cervical & thorasic spine show no lesions they could still be there. Oh well, whatcha gonna do.

Hugs,
Tammy


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