saw MS specialist today - not many answers

[ashleyPT]

No definite answers besides "follow the symptoms".  No other explanation for my symptoms, abnormal SEP, new spot on the MRI, or abnormal pupil reflexes.  Still in the category of possible MS with no other diagnostic options.  Back into the waiting game I guess.  I know you guys understand the frustration.  I just wonder sometimes if the doctors even hear what they say - for example he said there can be abnormalies on brain MRIs that aren't indicitive of MS, but look like lesions with a certain age, HTN, diabetes, severe migraines, and head trauma. Then he immediately said but you don't have any of those - so really nothing was explained.  Ugh.

[essdipity]

Hi. I've reread your jourmal and your recent posts, and my conclusion is that the problem is not you, it's the very sub-par medical intervention you've had.

It's idiotic that an abnormal SSEP means nothing! Then I guess that a normal one means less than nothing. So why bother testing it?? The accurate statement would be that a normal SSEP in conjunction with your symptoms would not rule out MS, but an abnormal one is clear evidence. This has to be considered with your MRIs, your findings upon neuro examination, and what has been ruled out. In your case I think everything else has indeed been ruled out.

The fact that you've moved around a lot is a big disadvantage. You really need to find a good MS clinic, and to be seen by experienced doctors, not residents who may be clueless. I urge you to make it a priority to rectify this. It could cost you, but working part time is already costing you.

Your symptoms are really very severe. What big metro area is near you? Do some research and find a better doctor. We can help you with this. It already has taken a long time for you, and it may take quite a bit more, so I don't want to sugar-coat it, but you do need to get on a better track right away. If you want to PM me, I'll be glad to make further suggestions and look into things, based on what you say.

ess

[Nancy T]

Doesn't that drive you nuts when doctors make statements that seem contradictory--either to common sense, or to something that seems to be a general medical consensus, or to something they've said before, or to something that another doctor said--and then they can't or won't explain it?? You are just supposed to happily accept these contradictions and not think about them?

I have concluded that in much of the medical world, but particularly in neurology, one should not have any expectation that diagnosis and treatment--whether with one doctor or many--will proceed on the principles of logic, order, consistency, commitment, reason, predictability, or common sense. It's all potluck, hodgepodge, catch-as-catch-can, contradiction, guesswork, a crazy jumble... stick your finger up in the air and see which way the wind is blowing today. If you expect logic, order, and consistency, you're going to be verrrry disappointed.

What a bummer to have your symptoms be affecting your work so badly and yet be unable to get either a diagnosis or enough help with your symptoms.

Best of luck,

Nancy

[ashleyPT]

I guess he kind of was my second opinion.  He's the first MS specialist I've seen and I tried to be on top of my questions but I was a little confused by the whole thing.  He'd make a statement - I'd ask my question and he would just backpeddle then not answer anything.  

I had no lesion in 11/08 on the higher power MRI - then started having pretty bad visual symptoms in january.  Then a new MRI in feb. on the lower power machine and now 2 neuros have seen the spot in my occipital lobe.

He said right now I stay in the possible MS category (which seems like everyone could be in).  The other weird thing was that he said the abnormal SEP meant nothing, but if something showed on the VEP I'd be diagnosed.  I asked if it made sense to do another VEP since my first was before my visual symptoms and he said no.  

[rendean]

Sorry to hear of your situation. It doesn't sound like the your neuro is 'getting"the big picture. What is he waiting for? With all the abnormal exams and the lesions, why not the dx? Haae thought about a 2nd opinion? My neuro at the academic hospital told me ALL lesions in the brain can be MS plaques until proven other wise under a microscope. He further said there should be no lesions at all in the brain.  I do have HTN (long standing) and migraines and I still got my dx.

Good luck and take care of yourself,
REn

[ashleyPT]

I have had a lot of testing - blood tests, full MRIs, lumbar puncture, EMGs....so I am grateful in that aspect - I'm not fighting for tests.  They have ruled out most possible mimics.  I really don't have a GP which complicates things.  

I've been moving around a lot for the past 4 years with grad school and my first job, so I haven't had anyone follow my care (we might move again soon also).  I also have never had the same doctor examine me twice with residents and moving and blah blah blah.  I have a journal and I keep all my records and I even take videos of myself on bad days.

At this point I just really need some help getting through my day.  I'm so weak and fatigued that I have to work part time - I'm limited in the type of patients I can see because I'm not safe with some of them.  My vision is making it difficult to get to work and write my notes.  I have never been diagnosed with optic neuritis - just problems with my pupil dilation, tracking, and I can't see objects on the right side.  

An otherwise healthy 26 year old shouldn't have to work part time.  I'm trying to work full time, but the doctors are the ones limiting my work schedule to control my fatigue.  

[Wobbly]

Hi there, so your going through this as well as others.  I myself have been there and waited for more tests and still I'm waiting for more tests.. this process can either be quick or long... My opinion is that it take it's on sweet time.....

it matters what shows up and the Neuro your seeing does make a difference.. I've seen a few of them and still no Dx.. but getting closer each year...they say??

I just want an answers, and if it's not MS. What is it.. RIGHT... that is all we ask for, some answers to explain what our bodies are doing?  

Have you had all the blood tests, a FULL SPINE MRI.. have you had ON..how long has all this been going on?  

what does your GP say about this?  

take care and let us know how things go...remember to write down any symptoms to keep track of new ones or bad spells etc..

wobbly
undx