To answer the question as to why I had no long-term follow-up care was because I did not have any symptoms and just put it out of my head. Big mistake I guess. I don't know how long DMD have been available but none were recommended and I really did not investigate the diagnosis. You know "out of sight out of mind"! I think I was in denial, since I had never known anyone with MS.
Thanks so much everyone!
Sal--
Good grief, really? You have a history of an MS dx and he still behaved this way? That's nonsense about the 16 year interval. Many people with a NEW dx find in looking back in their medical history that there was some episode many years previously that went unrecognized at the time. Many.
I'm curious as to why you got the dx but didn't have any long-term follow-up following that or, when they became available, any DMDs.
Bio
Well the exam to <30 minutes and no he did not care about any of my other symptoms like extreme fatigue, numbness of my hand, arm, leg and face. Also I was trying to tell him about how heat really gets to me lately. I also asked him if my eye pain was due to migraines and he said "yes", I have had extreme dizziness and clumsiness out of nowhere. I think you are right I need to run to a new nuero. At least my PCP seems to act like he is interested. Since I lost my job and have no insurance it adds to my frustration. I am going to ask for a referral to the ECU school of medicine for a second opinion-hopefully I can get it and at least get another suggestion. The nuero did not even care that 16 yrs ago I had a diagnosis of MS with a positive MRI and LP-that's what really frustrates me. I had no symptoms of MS until this year. He said I would have had symptoms by now! I'm really frustrated and going broke trying to figure out what is going on with me! I know you all are not comfortable looking at an MRI, but I thought someone might have had personal experience looking at one, so I thought I would try. Thanks to you all! It helps to have somewhere to vent!
Bio hit it all and then some - she is right that you need to find a different neuro to work with.
don't settle for anything less than an answer that seems reasonable to you!
be well, Lulu
Forget about having folks here look at your MRI. The pic you posted isn't informative anyway, and most people here aren't comfortable with that. What I am comfortable doing is telling you to get yourself a new neuro, stat. First of all, this neuro is not diagnosing based on clinical information, symptoms, and imaging all together. Second, this neuro is making up an algorithm for diagnosing MS that does not exist, i.e., requiring a positive LP. That's NOT a requirement for an MS dx. Third, this neuro is completely dismissing the differentials suggested by the neuroradiologist in the context of your symptoms and simply saying "migraines," which is just such a classic case of "I don't give a rat's *** and want you gone" that it's getting tedious.
What are your physical exam results like? What has this neuro found? Was it a thorough exam (>/= 30 min)? Did the neuro take a complete history? Does that history include significant migraine episodes? I would guess without even looking that you're female and middle aged, and that this neuro is lapsing into a default assumption based on that. I mean it very seriously when I say that you need a different neurologist. We should all run away screaming from people who "practice medicine" like this.
Bio
umm.. it's not easy looking at the MRIs I'm not a radiologist...I do see some white spots and area of questions... I think it's a good idea to go for the LP.. just try to relax and I asked for a pill to help me relax before my LP..
I think worrying if worse than the actual procedure...remember too lay flat for a hour or more and take it easy for a day or two.. don't do much..
let us know how it goes..
take care
wobbly
dx