Why are Drs. so reluctant to give a diagnosis?

[AbbyNormal49]

Hi All,
  New to the community and looking for some wise advice and insight about the whole M.S. diagnostic proceedure. I am new to the Detroit area and need to find a damn good Neuro.! I have seen one...barely. The exam was very short and she ordered a MRI after I kept questioning her about it. (the last one was 3 yrs. ago without contrast)

    I have been having symptoms for about 9 years and have seen 2 Neuros in the past( in G.R.) ....one that treated me with Rebif for about 3 yrs. and the next one said I didn't fit the "classic" picture of R.R. M.S.and just decided that I would have to live with things as they are, maybe "This is as good as it gets" for me!

   I have had a decompression surgery of the brain stem many years ago for Arnold Chiari Malformation and I think that the nerve damage done then confuses some Drs. But, A.C.M. does not cause brain lesions and the symptoms I have been experiencing.

   I am far from fatigued.Malaise is a better word.  Muscle weakness and wasting. Numbness...used to just happen when I laid down (not pins and needles....it's like my arms and legs don't even exist) but now, I could be standing up and my legs are just not there.

   The Internist I have been seeing seems to think I WANT a diagnosis of M.S. and thinks my problems are "psychological" or fibromyalgia! It is true, I want some kind of diagnosis, so I can get some help before I become bedridden.  It only took the Drs. 25+ yrs. to diagnose the A.C.M.  I am just so worn out and need some ideas from anyone in the Detroit area that could direct me to a really good Neuro.
   Can anyone throw me a bone here?    Thanks in advance.

[Quixotic1]

I forgot.  I wrote a pretty long, but I hope readable set of articles on the diagnostic procedure for MS.  I think it helps to read the history of the process and then read the actual explanation of the diagnostic process.  Here are the links.

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Behind-the-Diagnosis-of-MS/show/158?cid=36

and

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/THE-MCDONALD-CRITERIA-revised-2005/show/370?cid=36

and here is the Index that has other articles

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/MS-Information-and-Resources-Index/show/22?cid=36

We also have had two long threads about the common mistakes docs make in diagnosing MS in case you missed them

http://www.medhelp.org/posts/Multiple-Sclerosis/DUMB---Disorders-in-Doctors-/show/1116530

and

http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879

I hope these help.

Quix

[Quixotic1]

I agree with most everything that has been said.  I, too, am very suspicious of "losing an MS diagnosis" unless it is because there is evidence that it is something else.  For a doc to say you don't have MS because the lesions are not "classical" is DUMB (see the recent thread on doctors with DUMB syndrome.

I have to make a gentle correction to Docflick about the usefulness of the LP.  The spinal fluid can NEVER get a definitive diagnosis of MS nor can it definitively rule out MS.  However, if there are 2 or more Oligoclonal Bands in the fluid it does add evidence that points toward MS.

There is also a small database of MS neuro evaluations on

msneuroratings.com

Sometimes this can point you toward a good doctor or away from a bad one.  I urge EVERYBODY to go to this site and post your evaluations of the good the bad and the ugly neurologists that you have seen. Only if people add to the database can it serve to help people in situations like this.

You are correct that what was done by the ACM could be a big roadblock to care.  The trick is to get a doctor that actually thinks.  This doctor would be able - as you are - to look at symptoms that could not be a part of that earlier problem, and to realize that stuff that has happened since is likely due to some other neuro problem.  I don't know - Does ACM ever recur?  Is this something you stay under the care of a neurosurgeon for?

Quix

I am concerned that your internist does not believe you.  That is a bad sign for what kind of real care you will get from him.  Having a primary doc that is an advocate, rather than a cynic will go far in helping to get a diagnosis.

[docflick]

AbbyNormal49,I know how frustrating things can get with Doctors nowadays and if I were you I would go back to the Neuro that had you on Rebif and tell him or her to order a lumbar puncture because with your spinal fluid a good neurologist can tell you definetively if you have MS or not.I recall back in 1996 when I was told by my then Neurologist that I had MS I immediately told him I would like to get a second opinion & thats when I actually got my unfortunite diagnosis of MS and let me tell you my symptoms did'nt start appearing until 4 yrs. later so I can tell you from personal experience that Multiple Sclerosis no matter what type does NOT always fit what your one neurologist called the "classic picture" of relasping/remitting MS! Multiple Sclerosis depending on what type & the individual person can have a plethora of symptoms & each symptom can be drastically different from one sufferer to the next.I personally liked the advice Lulu54 gave about finding an MS center in the Detroit area because they specialize in MS and I'm sure they would be much more compassionate than any other Doctors about your situation                   Good Luck,   Docflick

[Lulu54]

and it is just plain wrong to take away the rebif if it was doing you any good at all.  Based on clinically isolated syndrome symtoms along you should be getting treatment.

[Lulu54]

Greetings and welcome to the forum here at Medhelp.  This is a very knowledgable community - I hope you will find it useful to stop through here.  We have a number of people here who are also in limbo, trying to find answers.  

You know this is not psychological so don't give up until you get some answers.  Many people here have seen several neurologists before they get any answers.

As for doctors in Detroit - have you looked for an MS center in your area?  Those neuros are specifically trained in the nuanaces of this MiSerable disease.  There has to be a good one in your area who will travel this journey with you.  The mscare.org website has a good directory of doctors and centers across the country.

Welcome again - I hope to see you around.

Lulu