So mad and confused.

[Angiee]

I am so mad. I posted on an earlier post that I had just gone for my 3rd or so MRI of my head and neck, with and without contrast. I also had an evoked something (where they put the wires on your head and u sit and stare at a tv). I have been calling and calling my neuro. to find out the results, and today she phoned me. She concluded that I have two white masses on only one side of my brain, that are not large enough to warrant anything, and that she basically is done with me. She wants to send me to a physical therapist for my degenerative neck disease. That was that.

My hubby and I were always questionable of her as her bedside manner was lacking, but she was supposed to be the BEST of the BEST at the Cleveland Clinic! So I just assumed bed side manner or not, she is the BEST so go with it. Boy was I wrong! So now I'm back to square one...what do I do now?? search for another neuro, and sit and let them listen to the drawn-out list of complaints? I have and come home and just suffer with the pain and suffering.

I know i sound like I'm having a huge pity party for myself, but I'm truly upset and so confused. I think from my understanding it does take awhile to get a dx of M.S., but now I'm at a standstill, how do i find a new neuro? And how long is this going to go on before I get something done. I just want to start the meds so i can feel better, i am getting more and more weak every day, and i'm in more and more pain every day. I hate this! Every GP Ive seen has said "MS" and said to follow up with my neuro....now here i am............this just stinks.

Sorry for the rant...i'm just frustrated and miserable today.
Angiee

[heliotrope]

Time to find a new neuro. Call the MS Society, they'll give you a list of local neuros. Get your records from the hospital and make an appointment.

[isamadjul]

2nd opinion

I say go get another Neuro! U can take your reports and imangeing to the new Neuro and he or she can read that. If they feel that they need more info then they will let you know.

Sometimes the BEST of the BEST doesn't work for everyone. I was in the hopital in Feb and I had a Dr tell me that Neuro's don't always have the best beside manner...he said most of the Neuros he knows would rather be in a lab but that they need people to "learn on" He didn't mean it bad just that some can have your best in mind but not be able to show it...a lacking of empathy.

My first Neuro was a JACK not just for his beside manner but for the way he treated me...like I was truly just a problem in his day.
My neuro now is a busy lady but she makes me feel like she listens and that is all the difference to me.

sorry for the long reply. But in short...or long...of it GET A SECOND OPINION! It won't hurt you!

[katvar]

I read somewhere that the average person diagnosed with MS has seen 4 neurologists before being diagnosed. Hang in there, write things down and make sure to speak up for yourself at your appointments.

I also know one of the supposed leaders in the field on MS. He missed the diagnoses - never looked at my MRIs. He was more interested in research and teaching medical students than he was in patients.

My current neuro is probably offensive to some. I see him as a straight shooter that doesn't waste my time. Within 5 minutes of stepping into his office he flat out said, "You know you have MS. You have had it for a very long time. I'm sorry the other doctors didn't tell you."

Every visit since has been the same. I appreciate his blunt honesty though it may not be for everyone.

Keep looking. You will find the right neuro.

[REG53]

I can understand your frustration. It took years and many neuros before I was dx. I'm not saying it will take you that long but I am agreeing with others to find another neuro.

I hope you feel better and find answers soon.

[Shashi]

Five years ago, when all of my weird symptoms started, I saw a great neurologist who really seemed to listen to me and wanted to get answers for me. He ordered an MRI and visual, auditory, and somatic evoked potentials.

The results of the MRIs were normal, as were the evoked potential, except for a delayed signal in my left leg.

I expected that doctor to continue the process of trying to find out what was wrong, and was shocked when I got a call from his nurse telling me that I didn't have MS and that I didn't need to come in to see him again. And that was it. No follow-up, no further tests to rule out other things, just "no, it's not MS and don't come back."

I eventually saw two other neurologist, and though my MRIs now show four lesions, they're not in the right places for anything, so I still have no answers. Nor do I expect to get any anytime soon. But that's okay. Maybe someday.

Definitely get a second or third opinion. And be patient. It maybe be months or even years before you get any answers. (By the way, be sure you get checked for Celiac disease. It can mimic MS and even cause brain lesions.)

Hugs,

Lisa

[tellnhelen]

Advocate for Yourself

If you know something is wrong...it very well may be...don't give up seeking answers.....it may not be MS....get checked for lyme too