Do I wait for an attack

[HVAC]

  I am undiagnosed going on two years and really confused about how far to take this thing. I am not seeking medical advice. I don't like going to Doctors except my yearly exam. Example I have torn acl ligaments in my knee and have lived with it. I am on my fourth neurologist. I did not even see a problem, but Doctors see something. The pattern is, the neurologist looks at my brain MRI's say there are lesions and nothing to take lightly, tell me to follow up and then they don't even want to see me again. I am really confused and sick of it. This last one six months ago found that some lesions had gone away and some new appeared. His exact words were. " It can't be anything but MS". He was going to do some more tests. He an cervical MRI found nothing, never did  the other tests, told me to call his office and schedule another brain MRI for February. I did and only got this message that if he wants me to have one they will call, otherwise I won't here from him. My insurance premium is going up 30.8% any day now, so I may not be able to afford an MRI next month. I read other posts and feel like I am so lucky, but I don't want to ignore something that becomes big since I have lesions. My MD says just don't worry until something bad happens.
                                       Alex

[Heather3418]

It sounds like they are telling you that you have a break in your leg.  They are sure of it.  If it gets so bad that you can't walk, come back to our office, for a cast.

It IS time for a new Neuro, if you can handle this when your insurance goes up.  When a diagnosis of MS seems all but certain, then you should be put on DMD's as soon as possible so it "doesn't get real bad."  Just like that leg fracture that really needs a cast.

I am so sorry you are going through the "Neuro Game."  It's like 'Pin the tail on the Donkey.'  A game that our younger members may not know of.   It's kinda like being blindfolded and pining a taiL on a REAL A*s.

Neuro Bon Fire needed.....Heck with the Bon Fire, let's fry them up...they will suffer more, like they make us suffer.  Sorry Pastor Dan, I think I just sinned.

All the best,
Heather

[Lulu54]

Alex,
This is so good to hear. I just read your post and after I was done screaming NO NO NO!!! to no one in particular, I was preparing to give you THE TALK about not giving up and pursuing a good MS neuro.  

Even though you say your are undiagnosed, it also sounds like somewhere they have given you the only option they think is possible - MS.  The longer you live with this MS going on without treatment the greater the chance you have of temporary symptoms developing into permanent impairments.  That is a chance you do not want to take.

Good luck with getting answers from this next MRI.

Lulu

[HVAC]

thanks,
  i called my regular dr. today and a minute later the neuro's office called setting up my mri so i am giving it one more shot.
                                        alex

[doni54]

Hi Alex,

I know you have already been to many neuro's, but none of them are doing what they need to do.  There has got to be one who will take care of you and get you started on the meds for MS.

I totally understand your frustration, believe me.  I went to dr after dr over the years and they all kept telling me nothing was wrong.  I kept getting worse until 2007, I couldn't even work any longer and still am progressively getting worse.

I was like you and never went to the dr unless absolutely necessary, and took what they said as truth.  Never questioned, just accepted what they would say.

I now don't have health ins (which I did have in previous yrs when I was trying to get someone to listen to me!), so now it is a very slow process having to pay for testing out of pocket.

Please, please, please, don't give up.  There are others here who have been to many neuro's before they have found the right one.  You owe it to yourself to try again.  At least you do have your MS dx, that should make a neuro sit up and listen, anyway.

I'll be praying for you to get the help you need and to find that perfect neuro who will help you.  Please take care of yourself and let us know what is happening with you.

Hugs,
doni

[HVAC]

Hi Doni,
   I have all my records of tests, MRI, etc. I give up!  This is Neuro number 4 and he is in the MS Society Hall of Fame. My Dr. is tried very hard to get good Neurologists. Most are tops in their field. We have two major Universities. I don't get it they all are all worried and I am convincing me not to blow this off at the first appointment or so and I go or try to do a follow up months later like they told me and they act like they don't understand why I am following up. I am not someone who runs to the Doctor or calls all the time. I am not sure if I have ever had an attack. I started with right side weakness picked up by a doctor, then numbness on my whole left side for months that went away. Now I have shock sensations moving all over my body all the time. They don't last in one place and move on to another so I can live with them. My brain over two years has slowed down but no Doctor gives a **** about that. They all act like I am making it up. Or people say it is age, I am only 45. This Neurologists phone system is almost impossible for me with all the numbers and extensions. I had it hang up on me three times today. I was told to call in six months to get an MRI which I almost didn't now
I can't get a response other than if he wants you to have an MRI will call. The first Doctor told me I had MS on the Phone and said pick up your records I a leaving town to head a hospital, the second bodily threw me out because I asked why she was treating me for headaches when the first said MS, the third put a hand in my face every time I tried to talk. I am reasonable and worked in the veterinary field so I have some medical knowledge. I don't take up these Doctors time. I don't talk much and don't call between appointments. Sorry I am at my wits end. Then I read what everyone is going through and I am ashamed because others are going through real bad stuff.  
      Alex

[doni54]

Hi Alex,

I hate to say this, but it sounds like it's time to find a GOOD neuro, yours sounds like a flake!!!  Sorry, don't mean to be ugly, but if he says it can't be anything but MS why is he making you wait?

He should have started you on a DMD (Disease Modifying Drug).  I don't understand at all what he is doing or better yet why he is not doing anything!!!

Do you have copies of your MRI films?  If not, you do need to get these and the radiologists reports that come with them.  You also need all your records of tests you've had.  Always keep a copy of these in your files, that way if you have to change drs, you will have all your records, just make copies of them to take to your appts.

You just don't need to waste time with a neuro who doesn't have your best interest at heart, and from what you've told us here this neuro is a loser.  I'm sorry to be so blunt, but is just annoys me when a neuro treats his patients this way.

I wish you the best, and pray that you find a good neuro who will help you.  If you don't know a MS Specialist in your area, just call the local MS Society and they can give you a list of local MS Specialists.

Take Care,
doni

[nette573]

I am undiagnosised for about 2 years also.  Sounds like they think you have ms I wonder what the hold up is about getting you to treatment?  I hope they get you on meds soon and you dont have to wait.

I went to ms specialist and he dont think mine is ms he thinks my spots on brain are vascular or migraine or smoking.

I am totally confused because stroke has been ruled out.  Everything else has been ruled out also.  I hope they get you treated soon so you dont have to wait for something bad to happen.
Lynette