It has been a few months and I am now in quite emotional distress

[syringles]

After almost 20 years, the first 17 of which I visited MS Centers and was either told, "You have something wrong, don't let anyone tell you different" or was diagnosed with MS, then re-diagnosed by a Dr. in my hometown in PA (who I came to find out was a clinical professor at an MS Center with all sorts of other accolades he felt no need to brag about).   I posted here a couple months back about a move I made to a different state where a promised neurologist who confirmed my MS and promised to "be here" quit within 14 months and I found a terrible man who questioned everything about me (lying about contacting former doctors,etc.) and I posted my elevated Igg synthesis from 2000 which was 10X abnormal and the one the new "problem" neurologist did which had >5 Oligoclonal bands in CSF.  I also have proven history via a very famous NeuroOpthomologist of Optic Neuritis in my 2nd attack in the early years, 2 sets of SSEPs, from 93 and 97 with median and tibial delays both worse each time.

I do not have tons of lesions as to fit perfectly with McDonald Criteria.  However; I did not diagnose myself.  That is the one thing I always wonder when I go to a new doctor.  Anyway, when I wrote previously it was to verify If I was reading the CSF detail correctly as the prior neurologist that caused me so much pain only acquired the summary and Quixotic and a couple others confirmed indeed that I was reading that right.

My luck has been so very sad here almost laughable.  I had a new neurologist and wanted to present that detail to him.  I may have stated, he was so incredibly thorough (3 hour total exam).  He had said at first appointment that he agreed with MS diagnosis but would have expected to have seen Oligoclonal bands by then and that was so weird as he was right on?  So I had to be delicate in how I presented him with detail  that I had but the former doctor never did??

But, true to my terrible history here, I got a letter that his MS Center was being closed down due to lack of funds.  I was heartbroken.  He had even gone so far as to check my blood (something the other neuro never did) to see how Imuran was effecting me and do a bone scan to check what therapies might affect me.  Turns out Imuran was adversely affecting my blood levels and he had to take me off and then he sent off my blood work for a test to see if I was a fit for Cell Cept and this was the end of May and his office was closing at the end of June.  I was so shocked at his kindness.   They gave out referrals on who you could see and I told them I just couldn't handle on more appointment based on them looking at my MRI history and then not taking me seriously.  They advised a group of 2 but these 2 live about an hour away.

Sadly, with my Primary, I had requested in the meantime a Neuropsych exam as my memory was getting so bad.  After the 10 hour test, you come back and get the results (Dr. gets a letter) and apparently I have such bad short term memory and worse than that my processing skills are worse than most people any age with MS (she was giving me measurements against ms and regular population, etc.).... Then they tell you the rest of the test which is Psychological and she tells me I am long term depressed, not just the latest Dr. (I told her about the situations with the Dr. that had treated me badly) but she said it was longer than that and I truly think it may be as long as I have been here.  So with that to dwell on, I didn't go to the other Doctor right away as she told me my processing skills were so bad that I had no business driving.  Wow....

The primary gave me one last name of a University physician and I just should have known better.  I admit to not being at my best as I was medicated and awaiting an appointment where I would be told to have a hysterectomy but I prepared all my old documents which I knew my primary couldn't send and I assumed as they are one large network, that he could request from her anything else.  I did bring all old MRIs from any other facility as requested.  He, as other neuroloigists had done, spent about 30 minutes reading my MRI's but I'm pretty sure he didn't read he older ones which are very important.  

But before doing an exam of any king, he had me walk and even if you talk in a nice voice that doesn't make something hurt less.  I felt like being treated like a 2 year old.  I knew as soon as I heard the words, he's made up his mind. as he let me to keep falling into the walls as he had me try do do this with  AFO's off and I had to learn what drop foot was and I hate it and cannot even walk around my own home without the AFO's.   I was in this States most reputable rehab center and as hard as I worked, the one thing they did tell me was (and they used electrical stimulation, etc) Drop foort wasn't going away)... So I heard "Good girl" good job!!!!" as if I was a 2 year old.  I hurt so bad that I was out of breath.  I wanted to tell him it was dangerous to let someone close their eyes like that and not be there to hold on but I just smiled and let him degrade me and Here's where I just need help as I have some good and some bad doctors so I am use to being questioned but his statement has me questioning all I thought I knew about MS or CSF and why even run it?

I am very willing to accept that there are difficult cases and as the Good Dr. who left stated as well as my PA doctor, I am complicated but have so many abnormal tests that one must (guess he meant doctor) take care of my neurological presentation.  This Doctor last week told me that after 20 years even though I had some new lesions that he should have seen many old lesions.  I can read that and know that about MS in general.  My problem is he needed to read my entire history in that I never had an abnormal spinal tap until 2000 and at that time there were lesions.  There is also something weird enhancing in my spine that the radiologist points as needing to be looked into(although vetral in natrue).  This doctor said I should be so happy and I will be kicking off those braces in a couple weeks (this is before an exam) as he didn't even ask what I wore them for.  I tried to explain my case and the former spinal taps, the odd situations, then I asked him about the O bands and he said they were quite insignificant!!  I said I don't understand - are you saying (and I am okay to the idea this may not be MS but some other rare immunoloigcal disease) but he actually said that they can be totally insignificant.  

Any time I look up elevated igg synthesis or elevated index or abnormal "O" bands of which I have > 5, I get Demyelinating disease.  Could somebody help me here.  I called his office and cancelled the tests he had set up as I do have to have a hysterectomy and then went ahead and made an appointment for the place that was an hour away as that is where my records are from the really good doc.  My sister will just have to take me.  

I would appreciate any opinions on a doctor saying that O bands are insignificant.  I know that are to be utilized in the diagnosis of MS only in conjuntion with other factors.  

[supermum_ms]

Hi syringles, i think it might be a good idea to re-contact the 2 good dr's you mentioned, find their email addressed anyway you can. Explain the situation that you have encountered since you are no longer under their care and ask them to intervien on your behalf or ask if they could advice you on who they would recommend you see. Its the only thing i can think of to do, its one big mess and you are suffering unesesarily, which is so very wrong.

Take care!

JJ

[Lulu54]

syringles, its good to see you again.
your trials with doctors is horrible - I hope you find one you like, even if it means traveling an hour to get there.  You sure need someone to take charge of your care and treatment.

As for your question about o-bands, I have read in two different places recently that o-bands really don't mean anything on their own and probably shouldn't even be part of the MS testing.  The dreaded spinal tap will hopefully fall out of favor with MS doctors sooner rather than later.

Be sure you have copies of all your tests so that when you move on to the next doctor you can take your files with you.  That's so important.

wishing you well,
Lulu

[Wobbly]

Sorry to hear your going through all this, I can't really answer your question about "O" bands as I don't know the answers..I can only guess that having "O" bands can be for other things then MS?  

you can have demyelinating diseases that are not MS...look DD online and see the different ones there..

I don't understand how the Dr can treat you like a 2 year old... and we put up with it..it's like you get nervous around them... HEY.. they are people like you and me and if we don't like how they treat us...we should let them know... Well...easier said then done.. cause when we have something wrong with ourselves...we need there help. so we put up with so much when we shouldn't... they work for us...and they should show some respect...no matter what they are trying to tell us...RESPECT US..

I'm sorry...I get myself so excited and upset when I hear how some people are treated by Dr.. it's not right.

I would write this stuff down and find another Dr if you can.. you don't need to ever be treated that way.

take care and let us know how things go..
hope someone else can give you some answers
wobbly
dx