I'm sorry to hear about your visit and the manner that your misdiagnosis for MS was handled. Was this the doctor that originally diagnosed you with MS and how long have you been her patient?.

I think you need to get another opinion (or two). I can truly understand your frustration. Please take it easy and take good care of yourself. Whether this is MS or not, something is wrong and you need a consultation with another neurologist. HUGS

I cannot even imagine how you feel! Angry and confused I'm sure. I don't know if the ms society can help you find a qualified MS specialist in your area. I would probably see one and see if they can rule out ms and give you other ideas so that you can find out why you are having symptoms. I think it is completely crazy for a dr to diagnose you with ms only to decide 12 yrs later, maybe not. They have no buisness being doctors. Back to square 1. I would sue for my 12 yrs back. So sorry this happened to you.

I'm sure the last thing you want to do is start over with new doctors, new tests, the works! But it sounds like you don't have a choice. Did the doctor who originally diagnosed you tell you on what basis he/she made the diagnosis? Anyway, this current doctor is just plain heartless for handling your situation the way he did, so either way it's a good idea to find a new doc.

I'm so sorry that you have to go through it all again. Find a doctor who really cares. And don't give up hope.

Good luck and HUGS! :)

Kristi

Sorry about your ordeal. That is crazy! I sent you a message.

I am so sorry for the way those doctors treated you. What disease modifying drug are you on for the MS? Did they say what possible damage could have been done to your body from taking it? Being dx 10 years ago-wow-that is a lot of unnecessary interferons (I'm assuming because that is all that would have been around in 2004). How were you dx? Was it thru clinical evaluation? MRI? Spinal fluid? Or a combo?

I ditto what MaMak said..Do the drs have any
Idea what what you may have

I was scary by a different doctor, it was at the MS center of Atlanta. He based my ex on lesions on brain and my previous chronic 2yr history of symptoms. Process of elimination, as I was reprinted for everything possible, all negative so with my history of symptoms he said ms. This new doctor says I don't have neurological findings. Negative eye evoked, spinal tap. My Mir has never changed in 10 years, 9 years, some radiologists say non specific lesions. It would be a dream to not have me but if not I DO HAVE something that is bad, causes me alot of problems.

That is why I hate doctors
I am guessing you have been through all the testing, etc? And that figures they "can't find anything." What does that mean exactly? With neurologist, who know!!! grrrr
I won;t see another one
I asked my internist to treat me after I was diagnosed in 2013 because I couldn't deal with a neurologist or a group of doctors.
I agree with sunflower.....definitely get another opinion.
do what you can to take care of yourself
I am sorry for the idiots in this field

I don't normally post much at all but I saw your thread title come up in my e-mails from Daily Strength and had to respond. I am currently going through the exact same thing. I've been dx for 9 years and now my neuro is saying that he doesn't think I have MS. I was dx by an MS specialist and in the beginning had new lesions appearing. My MRIs have been stable for a number of years and my neuro exams have ranged from definite clincal symptoms to normal exams with some deficits.

I can completely understand what you are going through. I just had another MRI done that showed no changes and I asked my neuro what else this could be if not MS. He said we'll talk about it at my appointment this month. Like you mentioned, it would be great if it wasn't MS but I am now back to square 1 where I was 12 years ago and I definitely have something going on and I've gotten worse over the years.

I would definitely be interested to hear what your neuro comes up with.

i dont understand... part of the difficultly dxing MS is its unpredictability.. would that not also include no MRI changes..

always headed down hill is not a definite with MS..one of
the few things i have found encouraging about it... you dont
have more lesions so you dont have MS..

thats down right stupid and the only study i have done is on
my own trying to understand what i am dealing with...
the last time i was told it was time for my yearly MRI i said avonex can pay for it.. neuro thought i was joking.. i was not..
i had been on that garbage for 5 years... one a week flu for 5 years.

i asked what if the MRI shows changes.. what will be done?
yeah.. we all know what..nothing...its for more info for
the meds and study...

sorry i am ranting...
i am so sorry your neuro is not human..
is heartless and frankly not the least bit wise...
no change is no reason to say no MS.. ridiculous...

hang in there hon .. it will get sorted out!
~hugs~

I'd like to add to this as well. I've heard about the revisions to the diagnostic criteria and I think as those revisions are made, our doctors are having to take a second look at what they've done.

This is why I like seeing a naturopath. Can't afford to get in there very often but I know I'm seeing an MD who actually looks at everything going on with me, not just my most recent presenting symptom of something.

I agree with everyone suggesting another opinion. There has been something going on with you for 12 years. This is why I follow other MD's that keep the natural medicine in mind as well; Jonathan Wright, Terri Wahls, David Pearlstein, Pearlmutter, etc. There's been a lot o good information out there and it just keeps coming. Did I forget Dr. Oz, Dr. Mercola, Dr. Carolyn Dean? We don't need to take any one doctor's advice to heart. There is lots of information out there.

So sorry you're going through this!

Sorry for your bad experience. From my experience with Neurologists for the past 13 years has not been good either. I stopped going to Neurologists and now am being treated by my primary care doctor. Maybe you can find a doctor that is not a neurologist. They are not very compassionate doctors. I love my primary care doctor, she is the best. She is treating me for my MS and my Trigeminal Neuralgia. I pray that you feel better and that you can find a doctor who treats you with great care.

This happened to me, also. I'm a nurse AND my old doctor actually let me look at my MRI. That doctor - and I - were convinced that I have MS. Needless to say - I changed doctors!!!
Brain and/or spinal cord lesions on an MRI are a definitive positive diagnosis!!!

Reading all your responses makes me understand how some neuros are being cautions and hesitant (including my own neuro) in diagnosing MS. It has a huge impact on ones physical and emotional being. It not a diagnosis that should be handed out lightly or "taken" back lightly either.This post make some appreciate my neurologist even more

I have done some readings on chronic MS lesions in search of my own answers ( I'm not sure if all neurologist are aware of this) and in locations that some neuros don't necessarily think can cause ms (Subcortical for example). I just hate how this happened to you.. I'm praying for you and hope all the support that you are getting here is somewhat comforting.

I too was died approx. 10-12 years ago by The Univ. of Maryland Center for MS, Johns Hopkins hospital, and 3 neurologists in my living area. About 2 months ago I saw a new neuro. My current neuro has horrible bed-side manners and didn't really seem to know how to treat MS chemically. He would tell me to follow that doctors horrible diet of organ meats and veggies and I will feel better. I want someone to treat mu individual symptoms, so I sought another neuro locally. He read all records available to him, and he said two things which scare me. I don't go back for another couple weeks. I've used the time of the original appt. and now to provide him more records from other specialists, like the ENT. But, what he said was it may not even be MS because my lesions have not significantly changed since the first year or two of dx and that MS doesn't cause "that much" pain and the lesions are not in a location of my brain where the pain receptors are.

This I keep filtering through my head. What if he tells me I don't have MS too? Do you just put that info in the hat md continue with another doc? I'll be watching this post carefully Carolinagirl to see what advice you get, and what solution you find for yourself. Please keep this thread going folks! Hugs, Lynne