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sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 8/3/2008 6:38 PM (GMT -6)   
When you get a flare what is it like. I know they are all different but can you descibe it? For the past few weeks I have had pain, extreme fatigue no energy to do anything except sit on the couch,UTI including frequency and urgency, pins and needles. I haven't had any balance problems. I am curious to know what people experience when in a flare. Also what they experienced when they were first diagnosed compared to now.   

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 8/4/2008 11:20 PM (GMT -6)   
Hey Sand,
I wondered the same thing about "flares" ... until I went thru a couple in a row and now that my body has "calmed down" I know the difference.
 
They are very intense. For me one was a bad case of Optic Neuritis (which made my diagnosis but was terrible for driving, I knocked the mirror my car!).... but it subsided so that my vision has stabilized now after about 2months of all the little nuisances off and on. It involved unequal pupils, some headaches, diminished color detection, and peripheal motion sensed that wasn't there. Permanently now it's the diminished color so far but all else has "calmed down". My car is safe again. :-)
 
The second major flare came on the heels of my LP, and it was all spasticity, which I never knew what that was til I lived it. Severe cramping in both legs, major charlie horse cramps in the calves and particularly the right leg for days on end without relief, made my calves look like marbles under the skin. Muscle relaxants & Pain meds provided temporary relief but by the next day it'd be in full force again.
 
Then one day about 2 wks ago (it probably was the cool Alaska Vacation!) it all subsided. Now it's the normal mild pain, mild cramps, mild aches etc.
 
Some flares can be bad enough to put you in the hospital too, so far I've been very lucky not to have that happen. (knock on wood, I'm fighting Acute Bronchitis right now and it's not subsiding very well).
 
Hope that helps... everyone is different so you have to sort it out for yourself but after awhile you'll know when it's a full blown flare and when it's just a situation.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 8/5/2008 1:16 AM (GMT -6)   

Flares are different for everyone.  For some, it is an increase in symptoms and for others it knocks you off your feet.  My last flare (which was over 15 months ago!!! wooohooo), I woke up and was completely numb from about mid shin down.  I was amazed that I could walk at all.  It was akin to having both of my feet tied into deep bags of sand.  I could not feel the ground and my feet were so heavy.  This was only the beginning - the numbness spread for weeks afterward and didn't stop until it was at my waist on the left side and mid thigh on my right side.  Despite doing the solumedrol for five days, I didn't find my new baseline for almost 3 months.  My doctor was great and started the steroids right away.  I was very sick and didn't work for a couple of weeks.  I had terrific nerve pain and spasticity for weeks and could barely walk. 

Eventually I had to have some botox on my left leg to alleviate some residual spasticity that was causing toeing in.  My flares are real obvious.  I know others have a difficult time deciding if they are flaring, but for me it has been like an explosion and I can tell very quickly if I am flaring. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006


sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 8/5/2008 9:07 AM (GMT -6)   
Thank you so much for sharing this. It is much clearer for me and I realize whatever I am feeling is probably not a flare. It is very helpful for us new here to know this. I wonder what people felt like a couple of years before Dx. Do you remember? For me now The fatigue is overwhelming and I am not sure what is going on but something is. I can't pick up a milk carton. Like I have heard before MS will show itself and it may take some time for a dx. I hope I do not get one but something is going on I couldn't go to work if my life depended on it. I may have to go for a LP soon but the doctors are still working me up. I need to go for spine MRI and I am so tired it is crazy. They also sent my blood to Cal to test for Lymes as well.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 8/5/2008 9:37 AM (GMT -6)   
Again, everyone is different.  I have heard some that have had symptoms for years before a diagnosis.  It is typical to find that one may have had some optic neuritis or perhaps some vertigo or numbness and tingling.  This usually resolves itself and the person thinks little of it. Then something else crops up, maybe some spasticity in a leg or a bladder infection or whatever.  It is hard to tie all of these seemingly unrelated things together.  Eventually, these flares result in residual or more permanent issues and that is when most seek a doctor's diagnosis.
 
I had very little going on before I got sick.  At Christmas time (2005) I had some slight numbness in my left thumb.  I never thought to see a doctor about it.  I just figured it was a pinched nerve or something.  It went away on its own over a course of several months.  Then in very early June (2006) I developed vertigo.  I went to the doctor for an "ear infection".  Of course the antibiotics didn't help lol.  Over a course of 3 weeks my vertigo worsened to the point where I was finally hospitalized - I could not longer walk without assistance.  I was in the hospital for 4 days and eventually misdiagnosed with a small stroke (it was a lesion).  A few weeks later I relapsed and after another MRI to see if I was having another stroke.......they found another "spot".  It was then that the stroke diagnosis was called into question.  It was literally 8 days later that I got my initial diagnosis.  After the second lesion was found, I was quickly given a lumbar puncture, evoked potentials and packed off to UCLA MS center.  There I was officially diagnosed with MS.  It was all very fast.  I was on progressoin therapy by October 2006. 
 
Obviously, most do not get diagnosed that quickly.  We have others on here that were diagnosed fairly fast and others have waited years for the answers to be clear.  MS is very tricky and depending on what part of the brain or spinal cord is being damaged, those will be the symptoms you experience.  There are many, many diseases and syndromes that mimic MS as well.  We have so many identify with MS just to find out that it was something else. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006


20yearsandcounting
Regular Member


Date Joined Jun 2008
Total Posts : 100
   Posted 8/5/2008 12:05 PM (GMT -6)   
yeah  Hey Sanddune!!!!  Probably 5 years before my DX I can remember one time I worked at a store.  I did the cash register.  (Take note, about 27 years ago cash registers were much different than todays and the place I worked had an antique one. It seemed like it anyway, lol).  I was ringing someone out and could not for the life of me remember the steps in doing so.  I had to call my manager on the phone and she had to come in.  It was so strange.  Then, a few years before my diagnosis I was in bed with a headache for three days.  It was so terrible.  I couldn't move my eyes without pain.  I went to the Drs. and then sent to an eye specialist and he did numerous tests.  He really didn't find anything out.  The headache went away.  I point my finger at those 2 occasions as onsets.  They happened well before my DX with the LP and MRI and such.  Hope my rambling on helps abit.

sandune
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 8/5/2008 5:35 PM (GMT -6)   
Hey Thank You 20 years for sharing some of those moments before you had a dx. It is helpful to know some of the things that happen years before. I am someone who writes off a lot the past few years and I never go to the doc until I am ready for emergency room. I have landed in the hospital twice.Not anymore now I am trying to figure this out.
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