I just don't understand...

[janereed]

I saw my supposed specialist today.  I have waited a year to see her and when I get in there with my records form the Mayo Clinic that showed my diagnosis of Probable MS and the recommended treatment plan of Copaxone, she shrugged it off and did her own "tests"..the usual stand here, walk there, finger to the nose..blah blah blah.  Keep this in mind..I went in my wheelchair because walking is very difficult for me right now..my legs will not hold me up for long..I walked as far as I could with her..my legs gave out..she told me that my legs are not weak...she said that my reflexes are not normal...i failed the Romberg test...failed the one where they scrape the bottom of your foot...she said she wouldn't treat me.. i asked why..she said she wanted me to have an LP first..I told her no..she asked why..I told her that the lumbar puncture is not required for a diagnosis and can sometimes not
even give the information needed for a diagnosis. There is STILL no recommendation in the world of MS Diagnosis that a positive LP for O-bands should be included in the requirements for diagnosis. I told her that I was not going to take the risk of an LP.  She got snotty and told me that if I want to be treated then I need to go back to the Mayo Clinic.  I told her I cannot because it is in FL and I am here in AR.  She just stared at me.  I told her that Dissemination of time and place is all that is truly needed in an MS diagnosis and showed her a interview from Nitin K. Sethi, MD that said the same thing.  She just stared at me.  I told her I have MRI findings of a lesion that in in the exact area where you see them in MS, plus I have the probable diagnosis and that Copaxone is approved for treating Probable MS..again she just stared at me. I asked her was she going to order a new MRI to check for new lesions since it has been a year and half..again she just stared at me.  i promise you I am not kidding when i say she just stared and said nothing. I then asked her what is it going to take in order for me to get treatment, do I have to be so sick that there is no way to help me, do I have to be to the point that my quality of life is so bad that I am completely miserable..because I am pretty darn close to that..again..she just stared. I finally looked at her and asked her did she know how to talk or is she just going to stare at me all day like an idiot.  Again..she just stared at me.  I told her to give me my medical records and started to wheel myself out.  She offered to push me out and I told her not to come anywhere near my wheelchair.
I just do not understand being treated this way.  i am a human being with feelings and an illness, one that has been previously diagnosed.  i do not understand why I was treated this way. I am so frustrated at the medical system and the doctors I have come across that I have now lost faith in it all.  I think I am going to try to find a Naturopathic doctor and seek treatment there.  There has to be a better way than this.  There has to be something out there to help when the mainstream medical system fails you.
I'm sorry, i just had to vent.  After 10 years I finally had an "answer" and a shto at treatment, and I got shutdown by a total jacka**.  If anyone knows anything about naturopathic treatments or homeopathic treatments, I would love to hear about them.

[janereed]

Thanks everyone for your awesome support!  Ik now one thing is for sure, we are all in this together..good docs..bad docs...pain and suffering...frustration....I know everyone here feels it just as much as I do.  It is so nice to have a place where I can come and vent my frustrations and know everyone gets it!!  You are all awesome!

[carrie235]

I'm so sorry to hear of your frustration. O jus wantedto mention that I had an lp andvi really almost didn't feel a thing. Also i was totally fine afterwards.   I hope you get some answers soon.

[DT16]

Hi Jane,

I don't have an answer for you either.  I'm sorry.  But I wanted to let you know that your are NOT alone!  I, too, amn dealing with incompetent drs and it's a VERY tough thing when they dont listen to you.  As if it's not tough enough for all of us already!  I'm sorry for your physical pain as well as your mental anguish.  I think Sarah's rightr on the money though.  Being a nurse, she's a smart cookie and knows what she's talkin' about.  Be your own advocate and turn the bonehead in!!  Maybe if we can weed out the bad drs, we'll havce nothing but good ones left, eh?  I know peeps.  I'm dreaming.
Take care Jane.  Much luck and prayers to you in your battle.
be blessed
Diana

[janereed]

Thanks so much...the LP just isn't an option for me, my daughter had one and they ended up causing a major leak, so they went back to blood patch it and nicked a nerve that has caused her problems ever since.  I just won't put myself through it and take the chance of something bad happening! I do plan on filing a complaint, whether or not they want to treat me is their business, however, you can treat me like a human being while you are denying me. She could have, at the very least, ordered an MRI with MS protocol, since I am due for one and the original was not done with MS protocol but still showed a lesion. I have always been a person who treats others the way I would like them to treat me, and I guess it is too much to expect the same from doctors who think they are better than you.  I have prayed for a while now about the route I need to take in getting treatment for this illness, and I got my answer yesterday.  While I will still go to my PCM for my MRI's and such, I am starting to see a TCM (Traditional Chinese Medicine) doctor tomorrow.  She is a 5th generation TCM doc and has treated MS patients before, with excellent results.  For 10 years I have been treated like I am nuts, or told that I have this or that, then bloodwork shows it isn't.  I have been tested for everything they could test for, other than what can be tested for in an LP, and all have been negative.  The neuro at Mayo gave the Probable MS diagnosis and the Copaxone recommendation and I thought that was the route I was going to take, but after yesterday, I realize that I trust Eastern medicine more than Western medicine at this point, simply for the fact that they treat you like a human being and take the time to get to know you and your symptoms.  I am not giving up on getting treatment, just going a different route.  I am going to request a referral to a different neuro, mainly because I need to be followed, but I have no desire to find one to treat me with DMD right now. Maybe down the road, if more lesions show up, neuro's will take me seriously and then I will start DMDs.  If you don't mind me asking, where are you in AR, and who is your neuro...he has the right attitude.   If there is a test you wouldn't even think about doing on a family member, then why would you want to do it on someone else??  

[SarahL2491]

first, you need to file  a complaint with the medical board in that state against her for her unhumane emotional treatment of you
second, every patient has the right to say NO to any test
            I too refuse an LP, I won't take the risk, I've assisted in helping do too many of them
            and doc scare me; they are not slow and careful enough (cause you can't see what
            they are doing back there)
            my 3rd neuro said "he wouldn't do it to his mother and he wasn't doing it to me"

three,    I think you did the right thing in leaving, no sense making a doormat of yourself.

but you have just experienced how hard it is to get a Dx.  Even when you get it, there will be neuro's who will say the one who gave you the Dx is nuts.  They all think they are gods and that we actually want this problem........duh

message me personally, I also am in AR, maybe we can put our heads together and find you one closer.......

Sarah, RN

[wiggles94]

So sorry to hear how your long awaited appointment turned out.

I'm not going to defend your doc - but I do know that LP can help in making sure there isn't something else going on.  It can help with a dx of MS - and even if it's neg you can still have MS, but it may show that something else is going on.  

Of course - whether or not you have an LP is up to you - but I wonder why you think it puts you at risk?  Have you had them in the past and had difficulty with them?

Right now you are frustrated and angry - give yourself some time - look at all your options.  Don't give up on getting meds if that's what you feel you need.  You may have to find another doc - I know I saw two neuros - The first is treating me for probable MS - the second - wasn't as convinced it was MS - if I had gone to him first I probably wouldn't be on DMD.  And I may seek another opinion because I'm not sure if I should be on this stuff or not.  But I know I need lots of time between appts - docs, test etc to process info - do my homework etc etc.

BUT with that said - sounds like you don't want to wait too long.  Is there another neuro in your town that you can see?  
Again - so sorry for what you are going through.  Hang in there!

[drsdonthelp]

I hear your frustrations!! I do not have an answer for you as I am in the same situation, but I feel the same way about these DRS THAT DONT HELP!!

That's why I have the name drs dont help!!  LOL
Good luck in finding a new neuro
Pam

[Sumanadevii]

It sounds to me that after such a long wait then the trip to actually see the specialist, you were probably in a good deal of pain.  Then the disappointment that she wanted to run yet another batch of tests...I think that put you over the edge and the cooperation stopped.  I wouldn't give up on the medical community because of it.  But I will say, most neuro's are going to want their own tests even after viewing what we bring to them.  She perhaps could have handled things differently.  After all being in practice she has probably seen other disappointed patients.

My suggestion would be to find another specialist...ask more questions before making the appointment this way you will be prepared.  Will they want more tests?  Which ones?  Can some be scheduled before the appointment?

You will do a disservice to yourself in giving up.  You need that DMD to protect your body from more damage.  Keep on...Keeping on...Things will look better.