MS Diagnosis Conflict

[dragonflynda]

I have been evaluated for MS for 20 years.  No lesions have been found, the spinal tap was botched up and I had to have two blood patches.  I had long term effects from that.  My neurologist says I don't have MS based on the MRIs, the rest of my doctors say I do.  My ophthalmologist says I do and I have been told an ophthalmologist can diagnose it.  My neurologist and I have had rounds where we have been somewhat hostile about this.  I get to the point where I just accept whatever it is I have and try to move on.  Then, I have flareups and I get frustrated about it.  I have a lot of the normal symptoms for MS and doctors treat me for it based on what they can do, but I am not on any MS drugs per orders of neurologist.  He is a major neurologist in this area.

If I do have MS, am I becoming worse by not having the MS treatments?  Can my ophthalmologist make the diagnosis?  What should I do?

[HVAC]

I am sorry it is so hard to get a diagnosis. I am no doctor.

Theoretically the DMDs only work 30% of the time when started on people with RRMS in the early stages. They could help in your case but they may not.

How many MRIs and were they of the brain only? Do you have ON? How many neurologists have you seen and were any MS Specialists?

It took several Doctors and many years  for a diagnosis and I have lesions.

Good luck,
Alex

I have decided my neurologists just put me on a DMD because he could do nothing. After a year I am choosing to stop. I had had MS for so long by the time I was diagnosed I am in the progressive form. That said I am progressing slowly and doing well.

In fact my disease is quite invisible.

[biowham]

Can you tell us more about your history? Why did the ophtha dx it? Did you have ON or more than one bout of it? What are your other symptoms/signs? Have you sought a second opinion from a different neuro?

I don't know what others would say about lesions. How many MRIs have you had? What was the strength of the machine? Was it brain or brain and cspine or brain and cspine and tspine? All of these matter in a determination of how thorough all of the examinations and ruleouts have been. What blood work have you had done?

Bio