Multiple Sclerosis Community
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Avatar universal

Anyone have thier dx taken away?

  I was diagnosed in 2001 with rr ms by my first neurologist. At that time had negative brain mri,  but she assured me she was sure that I had a  "classic presentation" for ms. I failed my neuro exam with multiple areas of obvious nerve problems and after 6 months of watching me, she started me on Avonex which I continued taking for 8 years, continuing to have relapses that required steroid treatments .  

When my neuro retired,  new neuro  more or less told me  before his exam that I was wasting his time showing up with a normal mri.   Then acted sort of baffled by my neuro exam.  He ordered tests and mri's again (all of them I'd had before)  and when they all came back negative stopped my Avonex and told me he didn't want to "pin that dx on me".   And said he would continue to observe my condition.  

The interesting thing is he sent his notes to my family dr noting that I had some" very concerning neurological findings that were highly suggestive of ms".   Funny he didn't say that to me.

I'm considering going to an  MS clinic. I've continued to have problems off the Avonex.   Can anyone suggest    

This discussion is related to diagnosising ms.
16 Responses
572651 tn?1531002957
Hi quiltr and welcome to the MS forum here.  That is crazy - this neuro obviously skipped class the days they discussed MRI's aren't all there is to making a diagnosis.  Using his brain and listening skills are so much more important.

We have a long standing tradition around here - on Friday nights we have a neuro roast, and I think yours is a likely candidate this week!  LOL

Yes, yes, yes to the MS clinic.  I would get on the phone immediately and set up your appt if you can or call your PCP and get that office to get it scheduled.

An MS neuro will better understand the nuances of MS and the importance of staying on these drugs.

The MS Consortium has a website with their members listed - I would look there for a neuro who is current on all things MS.  Their website is mscare.org

welcome again - I hope we see you around.


1312898 tn?1314571733
That's ridiculous, he is bowing down to the almighty MRI.  It makes you wonder how the diagnosis of MS was done betore the MRI.

Can you go to your PCP, talk to him about it and have him refer you to an MS clinic?  

I'm sorry you are having to go through all of this again.

take care,  Red
1323278 tn?1298126088
I agree with Lulu (Hi Lulu!).  Before stopping treatment altogether, I would go to a MS specialist as soon as possible and let him/her evaluate my condition and symptoms.  You might, or might not have MS, and Avonex might, or might not be working as expected (in which case the Doctor will probably consider another DMD if necessary).  

Hang in there and best wishes!  

Avatar universal
Thanks for the encouragement.  I've been trying to avoid the whole situation, which I know is not in my best interest.    I'm not looking forward to another (third ) work -up with another physician, who may render yet another different opinion.  As you all know the whole thing is exhausting and costly.   I will start with a visit to the MS Consortium

Avatar universal
    This neuro  is definitely for your "roast".   My first visit, he literally shook my mri films at me and asked me if I knew that they were normal and why was I wasting his time with an appointment.   Then he actually said the words, "you look  perfectly healthy to me" before he even escorted me to his exam room.   Can you beleive the nerve.  

Hello !!!! Even with a normal MRI, I was referred to him by another neuro who had been treating me for almost 10 years!    (the only thing he had no problem accepting was  my co-pay!)
667078 tn?1316004535
My first Neurologist was sure I had MS after doing an MRI looking for something elase. He left town to take another job and sent me to another neurologist. She decided no way I had MS even though the VEP she did was abnormal. I went to an MS Specialist who two years later diagnosed me with MS. I have had MS for over forty years according to the Neurologists and I only have two lesions and no enhancing ones.

1045086 tn?1332130022
Welcome to the forum.  I am just beginning to catch up after a brief absence to marry off my son.  Your topic caught my attention because two weeks after diagnosing me, my neuro's balls shriveled up and she ordered another MRI and a second opinion instead of the treatment she had told me we would discuss.  Fortunately my second opinion doctor became my first line champion.  He 'confirmed' the MS diagnosis four months later and ordered treatment immediately.

There are several people here who I recall have been back and forth with diagnosis.  Very recently, there was a story very similar to yours (reitred physician leads to undiagnosis).  I believe it was LATW?  I'll try to find her story in a topic and link to it for you.

You might want to reference a few topics here about D.U.M.B. and S.T.U.P.I.D.  They are syndromes that are uncommonly common among incompetent specialists of neurology.  This doc seems to take the problem to new heights.

Sorry if our anger and frustration is too visible here.  It gets hard hearing one bad experience after another, especially when there is effective treatment available and real people are left to suffer instead.  Please gather whatever it is that motivates you best and use that to do anything it takes to re-establish your treatment protocol and then get started with a neuro who ..... (bleep)  a different neuro.  

We are glad to have you with us.
1045086 tn?1332130022
I found it!

Start here  

and then read here  

Do what it takes to get it done, regain some control over your own destiny and resume your life.

And LA, where are you and what's up with that fever?  

372680 tn?1228165210
I think you need to write a letter to this doctor's superior.  He obviously didn't become a doctor to actually help people.  Don't bother going back if he is treating you like that.
Avatar universal
I've not had a dx taken away, just have never received one, for exactly the reasons your new neuro gave.  Although I have a number of neuro deficits on exam and got a lovely case of TN at the age of 34 (which then became bilateral, and also presented with occipital neuralgia), and I've had a possible case of ON, my MRI is clear, so I "don't" have MS.  

What I've asked avery dr that's said this, is, "Fine if it's not MS, what is it then?  I know there are other people like me, with "clinical" MS but clear MRIs--what DO we have?  Does anyone care to find out?"  Basically, the answer is no.

Although I'm happy to have my sx treated (don't know what I'd do if they weren't treating the TN!) I"m very frustrated to be told "not MS, at least not yet."  In other words, everyone thinks I have MS, but won't give me DMD until I have a spot (or 9) on my MRI.  THEN I'll "have" MS, but not sooner.

Knowing my luck, I'll wind up with spots about the time I'm 50, then I'll be told they're just age related...  :)

If you find another dr who will dx you, please send me the name!

Avatar universal
I really have to read more of the comments and catch up. I see I'm repeating what alot of others have already said.   From what  I've read, the McDonald criteria came about in 2001 or so ?  Before that neuros were more secure in diagnosing without that "magic #" of MRI lesions.

I think I'm going to look for some research to see if the McDonald criteria improved the diagnostic process or made it more difficult. Can anyone refer me to a site that would have some reading material on that?  

With the constant threat of malpractice cases, you can see where a neuro would like to be sure of a diagnosis. But not every illness is that cut & dry. I think the benefit of early treatment should come into play.
After all, the dmd's are prevention not a cure.  
Avatar universal
Sorry ..  in that last post  I meant to type, every illness is "not"  that  cut and dry.  

611606 tn?1315521367
Hello,  I haven't been on our Forum for quiet some time, your post caught my eye and I am glad it did..

Back in the dark ages when I was DX (Jan 29Th,1986) I had several Doctors who couldn't agree with my MRI, It showed three large Lesions and many smaller ones, their problem was all the internal spasms I was having, at that time most of them knew very little about MS, and the only treatments was steroids and Valium.

This was before they were doing the spinal MRI's or using contrast..

My New Neurologist, Dr. Scott. he is one of the main doctors at Allegheny General's Pittsburgh Hospital's MS Clinic, anyway, after he took my history he said he thought I should have been given a chance to have some of the new MS Drugs, even if I was PP MS...

What I am getting at, it all depends on "THE DOCTOR", you have been given some very good advice by "Our Group", Don't give up on you, and keep looking until you find a Doctor who is willing to hear you and See you, not just test results...

I hope you fine the Right Doctor soon, in the mean time we are all here for you and will be your support system.. Never give up looking for answers..

I'll keep you in my prayers... Please keep us posted on how you are doing..
{{{{~!~}}}} Hugs on the winds....DJ
Avatar universal
Thanks for your encouragement.  Everyone here has been so welcoming.  Sorry to hear
you've had such a rough time with your MS.  Pittsburgh is about 4 hours away  for me, so I've been looking a little closer to home for an MS specialist. (maybe in Phila. which is only 2 hours away).

This question is for all who have been to an "ms center".  Do all of them re-do your complete work-up at thier facility?   My co-pay is higher if I don't use my local hospital for testing.  Just wondering.  

Thanks again
572651 tn?1531002957
It depends on the test and how the first set of results were....

I had two EMGs because the first report had conflicting information that confused my neuro - he was justified because the seond test showed that I have two things going on with my leg -the MS and Peripheral Neuropathy.  He could have used the first one, because it said the same thing.

He did use my MRI pics  - in fact they will probably want to see your films before they see you in person.  

Be sure to ask any doctor if tests can be ordered to be done at your local hospital to keep the costs down.  They may be able to have blood work or repeat tests done there.

be well, Lulu

195469 tn?1388326488
Hi, "quilt" and welcome to the MS Forum.  Sorry your physical problems brought you here.

Yes, I did have my diagnosis taken away from me.  I was dx in the early 1990's with lots of symptoms and a positive brain and spinal MRI.  Upon going to another doctor a year later, due to scheduling problems with the first doctor, this doctor told me that my 7 lesions in my brain were "non-specific" for MS and my spinal thoracic lesion was a "flow-void."

I don't know about you, but I went through a terrible depression because of this second Neuro, because I was just beginning to adjust to having an MS diagnosis.  I was settling in for the long fight.  This second Neuro was a real "whack" job but came with a stellar reputation as being top-notch when it came to MS.  So who was I to go to to get help, if this doctor was so highly regarded?  

I suffered under his care for three years, until I finally got together with my primary care doctor and went to a teaching hospital here in Virginia.  After all this time, I was then found to have even more lesions in the brain and the lesion in the spinal cord, claimed as a "flow void," was still in the exact same place.  What's the odds of a "flow void" showing up in the EXACT same spot as my first MRI.  "Flow void" my patootie....

Please listen to the others here and get to the MS Clinic and find a doctor that knows what he/she is talking about.  Listen to YOUR body.  You know your body better than any doctor.  Unfortunately, with this disease called MS, we wind up having to sometimes "fight" for a diagnosis.

When everything gets straightened out and you are back on your Avonex, where you ought to be, give this first doctor a call and tell him to stick the MRI's up his "yoo-hoo."  Then don't forget to tell him that he's a quack and ought to get some continuing education on Multiple Sclerosis; cause he's "not quite there yet."

Guess you can tell I have some anger left over from my experience.  I really do understand the way you are probably feeling right now.  This doctor made you doubt yourself.  It's your right to take Avonex if you already received an MS diagnosis from your first SMART Neuro.  Please get that clinic appointment soon, so you are not without your Avonex.  It's vital to be on a DMD, especially if it is early on in the disease process.  It bods better for your future life with MS.  It's a good drug, if you don't have continuing problems with flu-like side effects.

Fight and keep up the faith.  You are your own best medical advocate.  And good luck to you dear heart.  I'm behind you 110%.  I've been there, so I really do understand.

All the best and sending you prayers for much strength....to continue your fight.  I am so sorry you are having to go through this, all over again.  You will succeed and you can do it.  Keep the chin up and stay determined.

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