Doc keeps changing diagnosis, lastly, MS

[Melisa-Cesareo]

Posted By  CCF Neuro MD on October 23, 1997 at 15:40:03:

In Reply to: Doc keeps changing diagnosis, lastly, MS posted by Melissa Cesareo on October 21, 1997 at 06:18:27:

: I was just released from inpatient hospitalization a week ago primarily for optic neuritis, (retrobulbar).Prior to that my doctor had
  originally diagnosed me with polymyalgia rheumatica,(even though I'm only 30). He made this dx based on the leg weakness and
  muscle and joint-like stiffness and pain. Then within a week of being placed on oral prednisone taper, I discovered I couldn't see in
  my right eye. I found this out by incidently covering my left to remove a hair. Once the neurologist and opthamologist saw me in the
  E.R., I had a neg. CAT scan, and alot of bloodwork, dxed with ON and admitted. I still had extreme RLE weakness w/spacticity, and
  bowel and bladder emptying disfunction(hesitancy). While inpatient an MRI was done which showed white matter lesions, and
  "degenerative disease process". Also I had a spinal tap which has now thrown a monkey wrench into the dx. My Dr. called today
  with results of positive in the Lymes portion of the CSF test(I failed to ask him details). But he said the test done is "very sensitive,but
  not specific for Lymes". So now I'm to see an infectious disease specialist for more tests. He says that even tho' he's made a Dx of
  MS, I may now have either both diseases, or something else entirely. I was treated aggressively both in and out patient in 1992 with
  IV Rocefin for Lymes, but have had no reoccurence. I was treated this last time with IV prednisone(solumedrol), with good
  improvement over a week's time, then going to an oral taper. My question is-what is your objective take on this disease I have? And if
  it is Lymes that has taken a demylenating progresssion, can I expect residual problems such as are seen with MS, and what of the
  Bowel/bladder dysfunction? Is this even remotely related to Lymes? HELP!!!!!! Please, I'm so confused and depressed because I
  cannot adjust to a disease if I don't know what I have. Currently, I use a wheelchair, rolling walker, and have P/T. Thank you for
  your time and anticipated response.

[CF-Neuro-MD]

_
Dear Melissa,
Hello, It sounds like you have been through alot lately.
Well there are some main points to be made- first the distinction between Lyme and MS can be blurry meaning that sometimes
a person has symptoms that could be caused by both diseases and the tests look similar in many ways.  
I think it is a smart thing to get an infectious disease specialists opinion regarding the diagnosis
of Lymes.  There are now more sensitive tests for Lymes- one being a Western Blot which is quite accurate.
Sometimes the diagnosis is clinical , meaning that the only way to make a diagnosis of Lymes is to
put it all together and treat like it is even if it may be MS.
The fact that you responded nicely to steroids does not help either way to make a diagnosis, both diseases can do this.
I need some more data regarding your tests results to make any kind of opinion as to what your diagnosis is.  There are
Neurologist that specialize in MS who are commonly faced wiht this controversy and know the latest research regarding MS/Lymes.  It may be worth going to an MS center such as
the one at the Cleveland CLinic 216-444-8600.  The boweland bladder symptoms can happen with both diseases as the nerve pathways that control them are effected by the
diseases.  As far as recovery, it is very hard for me to say without seeing you but neurologic recovery is a slow process and IV steroids can owrk up to 1.5 months so they may still give you a boost if it is within that time frame.
Good Luck and Seek out those doctors that are familiar with these diseases- infectious disease docs and MS Neurologists!