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KrissyUC
Veteran Member


Date Joined Feb 2010
Total Posts : 971
   Posted 2/16/2010 8:54 AM (GMT -6)   
Hello Everyone.
I wondered over here from the UC board as I have been through a lot in the last few years and would love to have your opinions on what is going on with me..
So here goes in short..well as short as can be
In 2006 I was diagnosed with Ulcerative Colitis. That was in August..on the 18th I received my dx and meds to go home with.
On August 25th I Was at home and suddenly had a really bad headache..this was the type of headache that when you cough or bed it hurts even more..it was awful..the morning after and for the next couple of weeks I had a really sore and stiff neck..disturbed gait, trouble swallowing, leg weakness,  and short term memory issues...This was all through September.,the pain and stiffness in my neck was dismissed by all doctors and other symptoms were just to due "stress" apparently. I had to take Ativan to loosen things up just to get to sleep. I was finally sent for an MRI on my BRAIN ONLY in November but things were NORMAL.
Then things settled down for a bit..I got pregnant, health was great..etc.etc.
about 6 months after my son was born..the symptoms started up again..memory loss, this time tingling feelings in my hands, lack of concentration etc. This time  was sent to a neuro...in office exam was NORMAL and sent for evoked potentials - NORMAL and another HEAD AND NECK MRI- NORMAL.
I forgot to mention during this time I had been also haveing issues with my bladder, not emptying properly etc when to see a urologist..NORMAL.
COlitis was flaring badly at this point and was put on HUMIRA..a TNF blocker. Not sure if the same type of meds are used with MS. I was on this for almost 2 years until recently I decided to come off. I have been off for about 6 weeks now and now neuro symptoms are back again..tinglying, memory issues, but something differnet now..my left leg has a weird feeling..I can really describe it but it almost feels as though it is working too hard....or that I almost have to drag it or something....last night it had some crawling, burning sensations on the left leg as well before I went to bed but tried to ignore it and slept.
 
So thats my story right now..
A few questions:
 
1.  If MRI's are done AFTER symptoms disappear does that mean the lesions disappiear as well?
2.  Why did I only have my brain and neck done? I asked about the spine and they said if something was wrong it would probably show up in brain or neck. I somehow think NOT ??
 
3. Does this sound like MS to any of you?
 
your comments are welcome. Thank you
UC since Aug 2006
Been a constant battle since Feb 08 after the birth of my son
OFF HUMIRA FOR 4 weeks!
Salofalk 9 pills a day
Fish oil, VSL, Vit D, Vit C, Flax oil, reduced red meat, refined grains and dairy
Just bought physillium husks but not sure what to do with them!
Currently not in a huge flare but not perfect either...


KrissyUC
Veteran Member


Date Joined Feb 2010
Total Posts : 971
   Posted 2/16/2010 10:48 AM (GMT -6)   
Anyone?
UC since Aug 2006
Been a constant battle since Feb 08 after the birth of my son
OFF HUMIRA FOR 4 weeks!
Salofalk 9 pills a day
Fish oil, VSL, Vit D, Vit C, Flax oil, reduced red meat, refined grains and dairy
Just bought physillium husks but not sure what to do with them!
Currently not in a huge flare but not perfect either...


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 2/16/2010 11:02 PM (GMT -6)   
Krissy,
 
You certainly have a lot going on here.  Ugh!  I am sorry you aren't getting any answers.  Does the neuro say what is causing this since you have all seemingly normal test results? Did he/she just say "stress"?  I am a little surprised that with the history numbness that someone put you on humira.  Not only is humira not ever used in MS, it is counter-indicated.  For someone that has hidden MS, it brings it out.  If you were on humira and you showed signs of neuro issues you would have been taken off of it right away. 
 
MS treatments are just used to treat MS.  The ONLY cross over is Tysabri (IV infusion) which can be used for crohn's.  The other mainstream treatments for MS are Avonex, Copaxone, Betaseron and Rebif.  Like humira they are daily to weekly injections.  They modulate the immune system specifially in the area of blood/brain. 
 
In MS, lesions are typically permanent.  I don't happen to get back to normal ( I have residual symptoms from the brain damage) but my lesions show even when I am not flaring.  The lesions are due to demyelination and this is very hard to reverse.  In some cases, very tiny lesions might cool enough to not show on an MRI.  Some feel that they shrink to a size no longer detectable on an MRI.  This then creates an arguement that MS could exist without lesions.  Isn't it possible that the lesion(s) are/is too small to show on an MRI?  Doctors usually won't give an MS diagnosis without lesions.  "Multiple Sclerosis" indeed means multiple scars (lesions).  It is very typical to just do an MRI of the brain.  We do have a member that was diagnosed with only lesions on the spine.  Apparently it is rare to only have spinal lesions only.  Usually if you have spinal lesions you also have brain leisons.  I have both.
 
I hope I haven't just muddied the water for you.  With MS, there are no easy asnwers or diagnosises.  For most it takes several months to years. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


KrissyUC
Veteran Member


Date Joined Feb 2010
Total Posts : 971
   Posted 2/17/2010 8:10 AM (GMT -6)   
Gretchen, thank you and God bless your kindness in taking the time to reply to me :)
Yes I have been through a terrible time the last few years but I muddle through, head up..mostly for the my hubby and 2 yr old son...
I too question being put on humira...I had read and signed the consent and asked my questions about my history in relation to this new drug but no one seemed to think it was an issue...I beg to differ now...I had the head and neck mri done in April while still on humira and that was the last test that showed nothing..
Could it be possible that I have a very mild case of MS? Does this even exist? Do some pple live their lives having ms symptoms and never getting DX and therefore not getting treatment?
UC since Aug 2006
Been a constant battle since Feb 08 after the birth of my son
OFF HUMIRA FOR 4 weeks!
Salofalk 9 pills a day
Fish oil, VSL, Vit D, Vit C, Flax oil, reduced red meat, refined grains and dairy
Just bought physillium husks but not sure what to do with them!
Currently not in a huge flare but not perfect either...


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 2/17/2010 9:07 PM (GMT -6)   
Yes.  MS is definitely a spectrum type disease.  Some have flares and they get back to a normal baseline between flares.  That seems to be pretty rare.  Most have flares and after each flare they are left with residual symptoms that can eventually result in disability.  Some have quite progressive MS and have severe symptoms and devastating disability.  There seems to be some controversy over whether or not you can have MS without lesions.  Some feel strongly that you can have MS without lesions.  It appears hard to get a diagnosis without those lesions.  Some doctors say there is "benign MS".  Google that one.  It still requires lesions as part of the diagnostic process. 
 
If you have MS, you may develop lesions later.  Some doctos will diagnose "probable MS" if there are clinical signs but no lesions.  After a year or so, if lesions have not shown up, most doctors go back to the drawing board.  During that "propable MS" time, most doctors won't treat with MS meds.  You are just sort of put on a watch and wait deal.
 
I am sure there have been many people who have had MS and just didn't know it.  They had mild symptoms that they managed on their own.  The treatments are all somewhat new for MS.  Two decades ago there wasn't much to be done about an MS diagnosis.  Others choose not to take the meds (needle phobe, too expensive, icky side effects). 
 
 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


KrissyUC
Veteran Member


Date Joined Feb 2010
Total Posts : 971
   Posted 2/18/2010 11:07 AM (GMT -6)   
I have had two MRIS ..two years part..the first in 2006 and then again in 2008, both were normal.

Maybe I have somehting else...?
UC since Aug 2006
Been a constant battle since Feb 08 after the birth of my son
OFF HUMIRA FOR 4 weeks!
Salofalk 9 pills a day
Fish oil, VSL, Vit D, Vit C, Flax oil, reduced red meat, refined grains and dairy
Just bought physillium husks but not sure what to do with them!
Currently not in a huge flare but not perfect either...

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