OMG, If the doctor ordered the MRI with and w/o contrast, and they didn't use the galadium, they didn't comply with the doctor's orders. Hard for me to comprehend.

I would say, that if they don't want to use the contrast agent after the brain MRI, I would absolutely insist on it, telling them that that is what the doctor ordered. That will show active lesions.

My experience was that I had an MRI, c-spine only, w/o contrast, and the radiologist and the neuro both said that it was fine. That neuro ruled out MS in me based on the MRI and the fact that I had no eye pain. He was a total jerk. Friends of mine have confirmed that. Can we say incompetent?

My new - and current - neuro looked at the exact same MRI and said, "Oh yes, I see white flashes on here." This is the same MRI that two so-called professionals had determined to be normal. He ordered MRIs with and w/o contrast, and based on the results, ordered a spinal tap to confirm. 2 1/2 months after I first saw him, I had a proper dx.

Thanks for your comments hummingbird...your experience must have been so frustrating and confusing...I feel for you. Added to this I am dealing with Neurologists in another language, and even with the best English knowledge there are often miscommunications and misunderstandings.
I saw my GP yesterday (American - so have good communication) and as I was not getting any better and had yet another bladder infection he suggested checking me into hospital for a stay. I resisted at first but seeing as my partner will be away on business this week it will be difficult to take care of myself at home with no one around. Also they can speed up the whole diagnosis process if I am checked in, and deal with one Neuro team rather than different locations. I am nervous as hell - dreading the Lumbar Puncture and trying to interpret what the doctors say, hoping and praying I get a competent and compassionate Neuro - that is all :)

Carmel,
I had no problem with my lumbar puncture, either before or after. It can cause headaches in some after the procedure, but I had absolutely no ill effects. Let us know how things go.
Jill

Hi Hummingbird, LillyPotter and everyone in the group - sorry its taken so long to get back to you but Ive been in hospital for 10 days and came out feeling very fragile and depressed.

Sorry to say the whole hospital diagnosis has been a bit of a circus. My GP decided to refer me as an inpatient because he was concerned that my symptoms were worsening, got to the point where I could not even walk on a forearm crutch, repeated bladder infections and bladder issues, pain behind the eye, debilitating nerve pain and becoming very weak and exhausted. I cant fault that the hospital did not take good care of me and the nursing staff were wonderful, However I cant help feeling a bit disappointed and confused by the way the doctors behaved, and they could not decide on any clear diagnosis.

Despite my doctor and the other hospital specialist who had prescribed the MRIs expecting an MS diagnosis , specifying that they should be with contrast, they went ahead and did three MRIs without contrast. Twice they had an IV line in but then they booked the MRIs for 6am in the morning when there were no doctors around to authorise using the dye! I complained twice and my partner complained too, but they thought it was not important or necessary.

OK, so the went on to do the Evoked Potentials, the standard neuro tests and the lumbar puncture (I screamed and my partner nearly passed out as they rammed the needle in so hard and hit a nerve), that was probably the nastiest thing to go through but luckily got no headache as stayed in bed for 24 hours after. Before that I was however vomiting with the pan behind my left eye and the trembling and numbness got so bad in my arms and legs I could barely manage a walker to get to the bathroom. Scary experience,

My observation (and I was not alone in this) is that the neuro team at our local small town hospital were young, inexperienced and mostly from eastern Europe. There were language barriers, cultural barriers and misunderstanding. They would come and tell me something different every day - on the one hand telling me I had a very terrible neurological disease to the next day we will make an appointment with a psycho-somatic doctor as this may be in your head. I think that was the lowest point in my time there, I wanted to stand and argue, but kept my cool and played along.
Hope and some clarity came in the form of a very lovely neuro-therapist and her senior colleague who took the time to sit and explain what they had seen in my cervical spine MRI. Even though the head neuro had said oh there is some damage and stuff going on in there he didnt think it relevant to my symptoms and dismissed it as significant.

However the other members on my investigating team looked a bit closer and explained they had seen patches of demyelination and scarring tucked away in the cervical spine just under my brain. They explained just why I was getting such varied and severe symptoms as why it all made sense. Once they explained that the nerves could not be replaced or repaired and it was unlikely I would ever be able to walk again, I just quietly wept.
I asked why they could not say it was a form of MS yet, but was told they need more time to observe the progress of the symptoms and its a tricky disease to diagnose.
Myself: I know my own body and symptoms and have done a lot of research lately. The lifesaver for me was the brochures I downloaded from the MS society of UK explaining why Primary Progressive MS can be so hard to diagnose as it can be tucked away in the spine and not in an obvious place. also the lumbar puncture might show no signs of inflammation. My symptoms seem to be totally in line with this, dealing with dizziness, loss of balance, disability, problems with choking and swallowing..list could go on. I was discharged with no clear diagnosis and no medication. My health insurance has paid for a walker and a wheelchair as my mobility deteriorated so badly recently and a referral to a neuro clinic 3 week residential to manage my disability and have some physical therapy.
I give up with trying to keep battling here, my life is in ruins, my partner is suddenly struggling to be my caregiver and Ive lost faith in the doctors here. We decided I will go home in December to be with my family in NZ and my partner can follow on later once he gets a residence visa for NZ. Its breaking my heart but I just cant seem to communicate with the medics here, I feel confused and alone, and I need to be able to communicate with a medical team in English. As several medics said about our local hospital here its a small place only used to dealing with the obvious and most run of the mill diagnoses. Sorry this is so long but I still cant believe how misunderstood and confused I feel even after 10 days in hospital and I feel that the doctors went off on a totally irrelevant tangent. Now I have to just keep breathing, keep calm and hope there will be a neuro somewhere who will look at my MRIs more closely and see why this is all happening. I recall the doctors in NZ telling me about the demyelination starting and that it might lead to problems in the future as I aged.
Thanks for your support and friendship here, symptoms have been overwhelming lately and just making it one day at a time, learning to use walker and wheelchair and coming to terms with my new life of disability. Any thoughts on what just happened? do I just keep fighting? trying to keep positive as best I can :)

Im so sorry to read about all your struggles. I wish it was easier to get to the bottom of it all and have a clear diagnosis. Being in limbo is the hardest place to be.... Im going threw same thing with my daughter.... she meets almost all the symptoms but yet her last MRI was two years ago and they wont repeat it. The doctors just keep trying seizure meds and saying try this and come back in 6 months! So frustrating :( Keep your head up you are going to get threw this never give up!

Carmel- I am sorry for all of your difficulty recently. . .seems like everything has hit you hard all at once.
I was diagnosed with primary progressive, and was surprisingly practically immediately after they did the MRI with contrast on my brain, only because I had over 9 lesions (it looked like Swiss cheese!)
I was 38, and put up with symptoms for over a year before I bit the bullet & went to the doctor.
Germans can be dry, frank (I am sure that adjective comes from some German guy with the same name!). . .and medical professionals can often become callous, how they really shouldn't be! (I could tell you stories of my birthing experience here!)
Hang in there! Thinking of you! Hugs, Anne

Sorry it's been so tough for you and that you'll have to uproot yourself from a country where you seem to have invested a lot of time and love. I can empathize - I live in Japan, where dealing with the possibility of MS (no diagnosis) meant learning a lot of new vocabulary and dealing with a lot of different attitudes! I now go to one of the best doctors in Japan for MS, but in a country where it's rarer you have to wonder if he really knows as much as a doctor might in the US, say. I'm undaignosed and in limbo that way, but thankfully the condition is mostly stable. I wish you the best of luck and hope that in a bigger, better hospital you may be able to get things sorted out.

Thank you all so much for your supportive comments - sorry my post was so long but its been such a circus here with all the tests and opinions from (mostly) very junior and student doctors.

I have some hope left because the very thorough and experienced specialist I first saw at the hospital came up with the diagnosis of MS as my symptoms fitted so closely, and now they have done a painstaking elimination of all other diseases which could mimic this, I am grateful for that. I believe that my type fits better with the PPMS category as I dont seem to have active antibodies in my immune system any more and the demyelination could have occurred in the past and is just progressing with age.
The wonderful physio told me that where they could see the lesions on my cervical spine would fit with the scary vestibular disorders Im experiencing (vertigo, dizziness, tinnitus and now swallowing) and it also lined up with losing feeling in my legs and not being able to walk. If I didn't have these wonderful support groups to share information and symptoms I would certainly lose my mind! Thank you again.