I have been diagnosed with Fibromyalgia. It can be hell, however, the 1st neuro I saw said one lesion in the brainstem. He reffered me to a neuro surgeon, who said, yes, brainstem lesion, not sure what it is but to deep to biopsy.
Thats fine, all clear and understood.
I then move house 200 miles away, so I see another Neuro to carry on with the investigation. He says, no lesion, never was one, see a shrink!. I saw the original scans I had with my first neuro, and you could see the lesion, wasn't very big and I am no expert. However I have had 2 MRI's since moving and haven't seen the scans once!. I kicked up a fuss, (cause I knew something was wrong), so he said, I have arranged for you to see my colleague who specialises in MS. So I saw her and from the moment I walked in she said, no you haven't got MS. I said great. so what could it be then?
After requesting a copy of some of my medical notes from my GP I then found out, she had never seen my scans and didn't even have my up to date notes in front of her that day. . Anyway, I have Fibro and thats bad enough. Is this just me being akward???.
Tinkertot, sounds incredibly frustrating. When you said you saw a neuro the second time, was this a Neurologist, or a Neurosurgeon? First rule of the game, all NeuroSurgeons will tell you something completely differnt then a Neurologist. Second rule of the game- not all Neurologists are created equally. If they do not have a very large MS practice, and they specialize in say Parkinson's Disease, or Migranes- chances are they wont know beans about MS lesions.
So you are in a position where you have to start over. Youve moved on past knowing who or what to believe (and who blames you?). Suggestion- if you have reason to think you have MS, make an appointment with a MS specalist, a Neurologist with a fellowship in MS. If you arent even sure you want to go that far, but really want to know if there is anything in the brain stem- ask around, find a good general Neurologist who will order you another MRI and be able to read it himself. Thats key. You cant always count on a Radiologist to read things 100% correctly. Their job is to look for things, however they have been known to be wrong. Having a Neurologist who can also read the films is very important, then you have two opinons, one test- and a better chance at a conclusive answer.
next rule- ALWAYS get copies of your films when you have them done. Its easy. You tell the tech that your appointment is tomrorow, and you were told to bring copies of the films with you. By law, they have to give them to you. Its an extra ten minutes in the waiting room while they either burn a CD with the pics on it, or make an extra print of films....in the bigger cities, everything is done on CD now- however, its not a bad thing to get actual films- just more awkward to carry around! While on this subject, you should also ask the referring doctor, the one who wrote the test prescription, to give you a copy of your report. Its usually one or two pages. they might even charge you a quarter to make copies, but you should have them on you. Reason? Exactly reasons like this. If you were currently holding your films and reports, you could take them to any number of people and find out what was there- is there- could be there.....but without them, its like no one knows what to say.
So, is it impossible to track down your old films and reports? They usually keep them up to 8 years...can you attempt this and start over with film in hand? Or if it is completely impossible....this is my suggestion.
Dont sweat the small stuff. If you cant control it, dont worry about it. Start over! Find out who is good in your area. Shout out here, to other posters, call the local MS society- talk to people who have used Neuros, and get names..and then see them. Interview them. talk to them and find one who seems reasonable and is willing to order you the gauntlet of tests which you know are coming and help you to be sure your dx is not only correct (fibro) but also the only thing you need to be worried about.
You are not "awkward" as you put it...I doubt your doctor is ignorant, and one has to give credit where its due- he is probably intelligent. But that doesnt mean he is the right doctor for you...and in this case, you asbsolutely have to advocate for yourself! Dont stop until you have answers...but dont expect them to fall into your lap. Youre going to have to work this one....but its not impossible. Start by either getting your old films and taking it from there, or starting over with a doc you like and trust- and re-doing the tests...
Its not impossible, just overwhelming.
Hang tight....you can do this!