Mystery Diagnosis PLEASE HELP

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gpretz
New Member


Date Joined Feb 2009
Total Posts : 2
   Posted 2/14/2009 3:15 PM (GMT -7)   
Looking for anyone who may have experienced this....

Diagnosed with crohn's over 50 years ago. Multiple resection. For the most part lived normally except for the usual flare up and hospital stay. 60 days ago suffered what appeared to be a spinal stroke. Neuro specialist believe it was spinal stroke or myelitis. Can not walk but have full feeling in legs. Rehab is progressing there slowly. Last week suffered confusion and dimensia for about 7 hours with no lasting consequences. Drs thought it might be stroke but eventually claimed must be MS. All tests are negative for MS and Doctors are just not sure what is going on. Overall health is fine. Blood work is negative. PLEASE HELP IF YOU HAVE HEARD OF ANYTHING LIKE THIS AT ALL. We are dealing with world leading doctors in field of neurology but they are drawing blanks and the emotional toll is heavy. please email or respond if you have any thoughts

gary

gpretz@bellsouth.net

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/14/2009 3:30 PM (GMT -7)   
Hi Gary welcome to Healing Well .You said that your bloodwork was good does that include your B-12 as many of us have a shortage of it I know the symptoms can cause damage in the neuro as well as problems thinking .I am thinking it must be something else but just wandering how your b-12 was. Were you on any of the biologics for meds as it can cause lupus and other sideeffects? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 2/14/2009 5:36 PM (GMT -7)   
eyes From what I've read elsewhere ( nono but I'm no doctor) this is typical of neurological disorders - loads of tests after a sudden crisis, lots of arguments between specialists, more tests, more delays...and a patient who is desperate to know what it is. Sadly, it is the nature of the beast that you may wait years for a definitive diagnosis.
My immediate, amateur, tentative thought is, many neurological symptoms not fitting standard pathology, some transient, no clear diagnosis with a suggestion of MS which however does not fit although it "must" - have you gone on the Lyme's Disease forum here ? It is unlikely you would have been given the only accurate tests for Borrelia Burgdorferii et al, if I remember correctly the standard ELISA test would give a false negative about 30% of the time and the typical doctor is very definitely not up on the demyelination of nerves by ammonia as suggested as a mechanism for the neuropsychiatric symptoms associated with "Herx-ing" Lyme's cases.
Of course, once you know more about a particular disease, particularly one that is known as "the great imitator", it is easy to start seeing it everywhere. But there is a known, accurate test which would help rule this out. I suggest you visit the Lyme's forum.
Best of luck, Gary. Please let us know how you are getting on. Never mind if it isn't Crohn's related, we still care ! yeah
And we know all about stressed out people who need to vent about endless tests and doctors shenanigans, we welcome them. wink

gpretz
New Member


Date Joined Feb 2009
Total Posts : 2
   Posted 2/14/2009 6:00 PM (GMT -7)   
i take b12 shots. all the bloodwork is clear. and they did test for lyme. please keep the suggestions rolling in. thanksgary

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/14/2009 6:02 PM (GMT -7)   
Could it have anything to do with medications you are currently taking? Have they started you on something new? Have they done an MRI?

If the issues you were having cleared, a TIA comes to mind which is like a small stroke that usually dissipates within hours, but surely they would have suggested that.
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 2/14/2009 8:43 PM (GMT -7)   
nono How you have been tested for Lyme's is more important than whether you have been.
The two step process is currently under legal review following a major prosecution by a state Attorney General, which led to the mass resignation of the medical licensing board. If you type the words "Nurse Kenny" and "polio treatment" into a search engine you may see parallels. yeah

That said, this person's predicament may or may not seem similar to you, here's hoping some of the information will be of use regardless of testing procedures ! idea

http://www.healingwell.com/community/default.aspx?f=32&m=637872

Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 2/15/2009 9:34 AM (GMT -7)   
here is a clickable link to the site sno mentioned:
 
http://www.healingwell.com/community/default.aspx?f=32&m=637872
  Never go faster than your guardian angel can fly! Be Patient And Tough, Someday This Pain Will Be Useful To You I get by with a lotta help from my friends!    
 Crohn's DG 2003 , symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Followed SCD Strictly 2003-06, then modified by adding new things 10-12 days apart to avoid delayed reactions in the form of arthritis symptoms. Scope on 2-5-09 was great! Doc says no symptoms,No scope for 10 years!!!
                                                                                    Margie11


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 2/15/2009 6:57 PM (GMT -7)   
wink Ta Margie, trust the Yanks to be ahead of me on the technology side ! (It wouldn't be hard.) smilewinkgrin

Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 2/15/2009 7:33 PM (GMT -7)   

sno,

   Sorry this is off topic, Guys. Any links I cut and paste into the quick post feature are inactive, but when I cut and paste them into the reply post box (the one that opens into a new window), they are always clickable. I think it is the way the site is set up. I think I have also recopied them onto the edit page with good results.


  Never go faster than your guardian angel can fly! Be Patient And Tough, Someday This Pain Will Be Useful To You I get by with a lotta help from my friends!    
 Crohn's DG 2003 , symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Followed SCD Strictly 2003-06, then modified by adding new things 10-12 days apart to avoid delayed reactions in the form of arthritis symptoms. Scope on 2-5-09 was great! Doc says no symptoms,No scope for 10 years!!!
                                                                                    Margie11

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