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My Story

Aug 19, 2008 - 0 comments
Tags:

Multiple Sclerosis

,

Urology



First a run down of my past :)
Mono - 1st Grade
Mono - 11 th grade
Pnemonia 12 th grade
Mono - 1997
Mono  / pnemonia -1999  
Left fingers went numb - 2000 Dr said Carpal tunnel due to moving boxes
Hip pain 2003-2004
Ok, now to more recent  :)
In April 2005, I woke up to my fingers in my left hand twitching all over the place!  I had to practically sit on them to make them stop!  The night before I had a strange stomach virus that enolved no stomach cramping, just dizziness and vomiting...Weird I tell myself, but it went away after a couple of days.  
I had a few days of dizziness after that, but I figured it was because we had stayed the night on our boat.
Then that summer I got a UTI, not that uncommon.  Nothing a little antibiotics can't take care of.  Well just a month after it is cured it came back. PCP tells me all the ways to keep them from recurring...tried them, nothing worked.  Kept getting them, got resistant to the norm drugs, got new drugs.  Can't say how many infections I have had!  At least once a month.  There was even a time I was on drugs nonstop for 90 days!!!  I told my Dr. that I was having problems at night even getting myself to go  pee!!!  
Now during all of this I have some sort of back spasm that led me into the Dr.  I felt like I had the flu and couldnt walk very well.  Dr. Rx'd steroids, that did the trick!  Yeah!  
After that it was just the UTIs for a little while , although they made me ache all over.  I did start my incesant twitching again around that time.  I blamed it on my body being sick from the infections.  Early 2007 I had another flare of my back, and it involved my hips this time.  That is when I noticed I walk a little funny and kept tripping over my darn foot.  Blamed that on my being to lazy to pick my feet up!  
Had my yearly well woman exam in late Jan. And mentioned to her about my recurrent UTIs.  She was concerned and told me to get a referral for a urologist.  My PCP is nice but he likes to blame a lot of things on stress!  
So get the referral, go see my uro.  He immediately detects residual... A lot of it!  Does a cytoscopy.  No cancer, just polyps from the infections.  Asks me if I get constipated...yes!  Asks if I trip over mr feet...yes!!!!
He then schedules another test (one where they measure the flow rate) and let's me go home.  Well I get a call from my PCP not 30 min from the time I left the uro!  He explains how uncommon urine retention of that volume.  He orders a MRI of the brain, Blood work, and sends me to a neuro.
Now....  MRI came back negative. I believe it was done on a very old machine...not even any ear plugs with music!!! Meanwhile I start experiencing weird buzzing sensations and muscle contrations.  
I tell my neuro at my first visit, he does not think MS at that time due to the MRI.  He then orders another with contrast 4 months later.  
Between visits, I experiance an episode that scared the heck out of me.  I was traveling to a school that I visit regularly.  At the light, I became very disoriented and LOST!  I drove around, but figured I had better go back the way I came so that I don't really get myself in a mess!  It lasted a few minutes and I finally got my bearings.  weird....
The next MRI of my brain came back minor periventiclar white matter changes particularly in the frontal lobes. (medical jargen to me)  Now he gives me the MS lecture of how it is probalby a mild form ????  yadayada.  Sends me for a LP.  Negative. Now I did not get the MS diagnosis at that visit, just a "we might send you to Shans, or Mayo.  He even mentioned that he sends people with ALL my symptoms to a pshychiatrist!!!  GEE Thanks I thought!  So I left that visit in tears...
He decided to send me for an EEG due to me getting lost.  (don't know the results)  I called to get the results, but instead got sent to another Neuro for a second opinion.
Now during this time I find My Forum :) I am now learning so much about MS!!!  Boy, I sure do fit the symptoms!!!  
My Urologist diagnosed me with a neuroginic bladder, and now I self cath to prevent infections.  It works!!!  Yippeee, no more UTI''s!!!  
At night it was hard due to my right hand really hurting...I then noticed I would wake up and my hand would be frozen open!!!  It was my right hand, then worked over to my left...this lasted about 3 months.  Boy it is hard to cath with frozen hands!!!  I am now free of frozen hands...whew very glad of that!!!
I went to the new Dr (j Me just getting over a really bad case of bronchitis) and the Dx from my first one is MS! and migraines!!!  What?  I never received ANY Diagnosis!!!  Well, she did a fairly thoughough appointment....mumbled somestuff under her breath with a mask on(she was sick too) about no lesions, but maybe a rhumatologist would help...sent me for a spinal MRI and sent me on my way.  It came back normal....but it was done on that same machine as my first brain MRI...the really old one.  sigh
Exactly one week after that visit which was 2 weeks after being really sick with bronchitis, I wake up with my right arm feeling really WEIRD!!!  I couldn't pick anything up, I couldn't write, it felt numb, but not completely!  I told my fiance that I was done with doctors!  So I decided to just suck it up.  I lifted weights and exercised it a lot.  It did come back and is fine till this day.  Also while my arm was funky, my left side of my face started to twitch.  Then when that was done after a few weeks, my left eyeball, yes my eyeball twitched!!!  It still does this intermitantly and my right eyeball joined in after a few months...sheesh  
My toes have gone numb, but only every now and then.
This May I did have a difficult time with the heat.  I went out to play basketball with my fiance and son.  We rode bikes to the court.  Played for about 45 min.  On the way back my righ foot would not pedal!!!  We get back and I wanted to go to the pool to get cooled off...I still couldn't pedal my bike there!  When I would lift my foot to walk, it would shake!!!  I eventually got cooled off and felt much better, it stopped.  But....the next night I got extremely dizzy and vomited, then got an ocular migraine with no headache!!!  No stomach cramps, just dizziness.  HMMMM
I have done OK...no more doctors yet...Just don't want to mess with it.  I know, I should go...but I want my symptoms to be unmistakable!!!  I have a supurb fiance and family that supports me and accepts me as all this goes....
Until later,  Cyn
  

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