I'm surprised to hear about neuros negating diagnosis. Like you Carolina, my CSF and EP tests were both negative. I was DXed on basis of MRI and clinical exam. I injected Betaseron for 6 years and went off against neuro's advice. I think that MS inactive after first clinical event. DX would probably have been CIS before criteria for MS diagnosis changed, mostly to get patients on interferon drug early. I honestly don't see any purpose in Neuro telling patient not MS (my neuro isn't going back on DX and we agreed to appt every year with MRI every 2 years). I'm in NYC, so there are several MS clinics. If you can get to MS clinic, see neuro from clinic. Otherwise, see MS specialist even if you must travel (you'll feel better). Best to you.

That has to be terrible. I'm sorry about that. I had two months or so when I was told I had MS only to have another dr say no, so I understand a little of your mix of feelings.

I'm on the other side of things - have various symptoms, including brain lesions on MRI - but doctors won't give me a diagnosis. I live in Japan and am with one of the best MS guys here, but I can't help wondering if I might get more clarity in the US with doctors who have more experience with MS (it's not as common here.) No major impact on my life yet besides fatigue, balance and numbness, so I'm just going on with things, but the uncertainty can be draining. Hope you get some answers.

I was first dx with MS by a MS specialist and then I went to see a non MS specialist neuro and she said I didn't have MS and wanted to go through all the tests. I said NO and went back to the MS specialist and stayed with him until he retired. But it takes someone who is specialized and really knows what he is doing.

I had classic textbook MRIs and couldn't figure out why this other neuro wanted to test me with all the other tests. I said it was a waste of money and I believed and KNEW I had MS.

Do your own research and try to figure it out. Change doctors, call the MS Society and ask for MS neuros in your area who are specialists. It doesn't sound like this doc of yours is very good with bedside manners.

I knew of 2 MS specialists at UNC in Chapel Hill and Duke who had terrible bedside manners and told people with obvious MS that they didn't have MS. They were insane and luckily the guy at Duke retired and the other lady at UNC is mostly into research. So it takes a lot of confidence and effort but you will find the right doctor if you have the fortitude. Best of luck to you. My best wishes to you. The doctors are people and they are idiots just like the rest of us.

I will send a regular post on this. I just had my appointment with my MS specialist and he felt that since my lesions have not change over the course of time (located Periventricular with majority in subcortical region), this is most likely cerebral (brain) small vessel disease which can strongly mimic MS.

We will do another MRI in 6 months. I think this maybe some of the reasons why some neuros are doubting diagnosis of MS if no change in lesions in years.

I Have a new 'S SPECIALIST NOW, I am pleased with his compassion and he LISTENS carefully what I say. I've only seen him one time. He said my case was weak however he is not ruling it out due to brisk reflexes, Mir , and my last 10 yr history of symptoms. I see him again early February.he ordered a brain Mir on that new high powered Mir machine that shows more. I think once he can see all my records and do some Mir comparisons he will agree it's me. I trust this doctor, he's from Romania, and has written many medical studies on me. It is hard to diagnosis especially if you're not the text book kind

Good to hear about this new doc. Please keep us posted. I would love to hear his findings and assessment. Let's wish for only the best for you. Getting answers will help you a lot and to put your mind at peace.

I just learned that I have micro vascular brain disease ( small vessel brain disease) which mimics MS quite a lot except the lesions are not in typical MS location ( mine is sub cortical with the most distributions) and the shape does not resemble typical ms lesions but gives a lot of MS like symptoms. Best wishes

I am glad to read that you have a new specialist who listens to you. I hope you do get answers be it ms or something else. Dx means you can look at treatment appropriate to dx.

Sunflower-same goes for you too.

I have a question. Were any of these medical professionals people that have specialty in MS (ie MS neuro)?

If not then go to one of them(a new neuro with MS specialty) and ask them to eval you. Do NOT tell them anything one way or the other about this last appointment as you do not want to bias them. Once they are done and you have printed doc in YOUR HAND. Then you can tell them what went on at this appointment.

If they agree it is not MS then try to get from them a referral to another sub-specialist in what they think it might be ie Fibro.

If they think it is MS...honestly they have felt it was this for so many years and this new neuro will be a specialist I would go with that.

Hope you can get some definitive answers at your next MS neuro visit. Sorry you are going though all this.
MS wife

I've been to 6 specialists over past 20yrs and have had 6 different diagnoses, incl. MS, MCTD, mastocytosis, CFS caused by EBV, and now being evaluated for Masthenia gravis among other possible causes for my symptoms. I also had brain lesions and first neuro said Ms. Second neuron said brain lesions weren't in right area for Ms, so not Ms. This neuro said Ms greatly over diagnosed and mimics many other diseases with many over lapping symptoms. It is really awful when all these specialists are so certain and put us on wrong meds based on their guesses. I am awaiting lab results to see if I have mg, Lyme. B12 deficiency, or some type of neuropathy. I'd advise everyone to get 2nd and 3rd opinions on any major diagnoses as apparently these doctors can be wrong. Good luck.

Well I just got on the same boat you are on. I was dx 5yrs ago & been on Copaxone ever since. I moved to another state & saw an MS specialist today who said "because a Dr I went to in 2008 didn't diag me & he's 1 in the field" maybe I don't have it. I went from 2 to 10 lesions in 2 yrs and got my diag.
I'm tired of this MS merry go round. I was diag b a MS specialist. I left feeling like an idoit.I got so confused I left important info out & I had everything all messed up.
Cant we just stick with our family Dr or a reg neuro, I'm tired of specialist.
So sorry you are dealing with this. I think you should stick with your original diag, after all we know our symptoms & difficulties best.
Lots of Hugs
Tammy

I know that I am new to all of this and that we dont even have a diagnosis yet so far we have heard probable MS, Cerebral micro-vascular disease and my all time favorite psychological illness. but isn't the point of DMD's to slow progression of both flair up's AND lesions. and if you had no further plaques would that not mean you have a response to treatment.

I was dxed with MS in 1996..had severe attack which left me in a wheelchair for 3 months...went into remission. ...did Betaseron shots for 10 years. No new attacks for 16 years. Stopped Betaseron because I started having symptoms from that. Neuro said that each year that I didn't have an attack it was more likely it was not MS. In 2012 started going numb again. Neuro did two MRI's of my brain and c-spine. No lesions. Dr. told me I definitely did NOT have MS. But still went more and more numb. Went to a different hospital and they did a Thoracic and Lumbar MRI. Found a horrible and active lesion the size of a quarter. I 100% HAVE MS, but it is mostly a spinal version of it. If you do not have lesions on your brain, you still could have lesions down lower and still can have MS. I have only had two attacks ever, have had positive protein, and my brain MRI looks great. Just because they say you do or do not have it, you may have it. Anyone that is told they have no brain lesions that are sure have MS and it affects their ability to walk or limbs...please get the other MRI"s too.

I've been to 3 other speciaity doctors, vascular, spine and a neurosurgeon, because I do have disk degeneration in my lower back mainly, some in my neck. . All 3 have cleared me in their area stating nothing they see would cause my chronic fatigue and chronic PAIN in my legs, feet and ankles.. I've had numerous blood tests, anything that mimics me I have been cleared. I know something is terribly wrong with my body, I suffer every single day including much cognitive declina. I just don't understand why I can't get a diagnosis, especially when I've had these same symptoms for 12 yrs and with some new ones now. My Mir has not changed either. I get no break from whatever I have, it only lightens up some for a few hrs or elevates for a few hrs but it's always there. I have a referral now to go to INC in Chapel Hill and I also just today called my original neurologist at THE MS CENTER OF ATLANTA and made an appt for July 20th, I'd like to share this new "non ms" news with him and my records from my other neurologists for the last 10 yrs and see what he says, thinks now.

That is just wrong. The dx requirements should be such a way that ms shouldn't go like that. I've been kicked under the rug for a long time. I started having lot of problems that looked like ms. But my doc blew me off. Saying ms shouldn't cause any pain. I finally get into the neuro yesterday. I try to tell her that pain really isn't a big factor for me anymore but it must have gone in one ear and out the other. She agreed to do the testing but her attitude toward ms, seemed doubtful. But she agreed to do all the testing regardless. I was curious have you had a spinal mri, sometimes legions can hide their.