Welcome to my world!!!!!
I was diagnosed with MS in 2006, then put on Betaseron and Copaxone, I very stupidly took myself off the Copaxone, shortly there after, my first neuro took back my MS diagnosis and baisically told me I have "static encephaly", which is a fancy term for Cerebral Palsy.
2nd neuro told me that I most definetly do not have CP or doesnt THINK I have MS, but is leaning towards something like Chronic Fatigue syndrome. He says that in the old days if your spinal tape was clean, you definitely didnt have MS, so I think he has that old and set in his ways way of thinking.
I have had about 4 or 5 brain MRI's, 2 Cervical spine ones, one LP and one VEP. Only my first MRI showed a lesion in my cerebellum. The lesion did not show after started my meds, which concerns me that I am not getting proper medical care, if it is indeed MS. For all I know, I couldve had a virus, but I still have issues and my symptoms are getting worse.
My LP came out clean and my Cervical MRI's and VEP' came out normal, so the new neuro is hesitant to diagnose me, so I am in limbo land! There is only one other neuro I could use in my insurance plan, so I am almost tapped out.
My symptoms are recurrent facial pain, teeth grinding, jerky limbs (especially on my left side, and now on my right arm, I can barely drive), burning pain going down my spine when I bend my head down, extreme fatigue, I have a great deal of difficulty climbing up and down stairs, things fall out of my hands easily, mirgarines and numbness, balance issues, and vertigo I have never had optic neuritis...I am really at wits end...I also take NO MEDS!
I am in a similar boat. I started having mild sx 8 years ago. I've had 3 completely normal MRIs. My MS specialist can't think of anything else it could be other than MS, but no dx.
If you're concerned about your mental state, I highly recommend neurocognitive testing. If nothing else, at least it's a "baseline" against which to compare later. (Otherwise you're just being compared against an age, education, income, etc., adjusted sample.)
Stephanie
Hi Cheryl,
I too have had 2 normal MRI's although neither one was under the protocol of "ms protocol".
Mine started with a very severe bout of optic neuritis. My neuro-optomologist was also concerned that it might be MS.....as my baby sister has had MS for the past 7 years.
Although I have all these symptoms that are pointing to MS, I refused a spinal tap at first, as I am terrified of them. I finally agreed to have one and it has shown several abnormalities that also point to MS. But still my current Neuro will not diagnose that I actual have MS at this point.
I have migraines, weakness and pain in my left leg and right hand. Vision problems, memory problems and light headedness, and balance issues. But still will not diagnose me with anything.....at my latest appt they even said it might be menopause.....I had a complete hysterectomy 10 years ago.
I too have been looking for answers as to whether or not it could be MS without lesions showing on an MRI....to date I have been told yes that it is possible. There is a lot of good information on this sight and the people here are extraordinary in support and answers.
I have already accepted the fact that yes mine is more than likely MS. But it is very difficult to accept and deal with and get on with things when your dr is so lax in diagnosing what it is and starting on treatment. Right now they are only treating my symptoms.
Have you had a spinal tap and blood syrum test done yet. That will help a lot in your dianosis.
I hope you find the answers and support you seek. We are all here for you anytime.
Be Well
Grams
Oh boy, you poor thing.......I was recently diagnosed with MS after 3 years of symptoms similar to yours, though unlike you I have multiple lesions on my MRI. But it started with migraines that seemed to alter over time, with less pain and more numbness etc.
I also copped the label of "panic attack" at one point. I found that quite insulting. The dr in question withdrew that remark after my MRI.
Umm.....the members in here are well equipped to answer your questions or add comment for you........I'm not really, but welcome and stay around and you'll get some support!