Lengthy timeline of symptoms - Limbo Land

[JulesL5S1]

I've just added my lengthy timeline of symptoms in my journal.   I'm really starting to think that I have MS.  

It's funny but back in 2000 with my back problem the physical therapist and neurologist kept double checking my records each time to confirm that the reason was because of my back and not something else.  The Neuro actually said he wanted another MRI to rule things out before moving to another diagnosis.  MRI showed more L5/S1 problems so another surgery.  But problems never resolved.

I know that the back injury did not/ does not cause MS however I think it may have caused a major flare up.

In physical therapy spent a lot of time learning how to "see and feel" with my eyes because I don't get enough sensory input from either foot.  

Now in 2008, more problems, read the timeline.  Current Neuro says brain MRI was normal.  But we were only looking for a tumor or stroke. no contrast on that MRI.  Went back to my PMP and she just ran all sorts of blood tests.  Vitamins level normal, slightly elevated white cell count.  Will have a back MRI with contrast next week.  

Thanks to what I have read here I did not blurt out to my PMP that I thought I had MS.  Gave her my timeline though. She's taking me seriously and is working through different tests.

Thoughts?  Advice?

[JulesL5S1]

Deb, I agree we seem very similar.  The hypothyroidism and back problems do complicate things.  

The brain MRI was an open machine - I am claustrophobic and I have a hard time with MRIs.  It was also done without contrast so from what I have read on this site I'm putting zero value on that MRI for the point of dx MS.  

The back MRI is scheduled for Wed and will be in a closed MRI with contrast.  My PMP has given me a prescription for my nerves to hopefully get me through the MRI.

The optometrist I went to also had an opthamologist in their practice examine me.  They recommended that I see a neuro-opthamologist but there are only 4 in my area.  None of the four are easy for me to get to.  (I tried finding the offices Sunday Easter morning when I guessed that traffic would be lightest and there was daylight.)  Even with that it was hard to get to the offices and I decided instead to see a regular neuro.

So I'm waiting now in limbo land.  Thanks for your comments.  

[Deb61]

Your history sounds similar to mine in that we both have other issues mudding up the waters for a clear cut case of it's due to this or that.  My journey started in the 90's (I'm probably about your age if you were in your 20's in 1980's).  It's been a long, frustrating journey to h*ll and back.  There's nothing worse than being in limbo (which I think you are).  

I also have thyroid disease and take Synthroid.  Like you, I also have some spinal issues (mine are in the neck) with bulging discs of a couple of my vertabrae.  I've not had surgery, because they aren't pressing on the spinal cord.

At first, when I read your symptom list, I was thinking that all of your issues dealt with your back problems.  However, when you mentioned your vision problems, I began thinking that there was something else.  The dizziness doesn't fit the picture of spinal problems either.  

You mentioned that you've been looking at the posts on this site.  Have you looked through the Health Pages?  There's a lot of good information there.  Plus, there's some good information about mimics of MS, info about MRIs, etc.  

Do you happen to remember what kind of MRI machine that was used?  I've had a negative MRI the first time (open weak MRI machine without contrast).  My second MRI was positive when I had a stronger closed MRI machine.  I think it was a 1.5T.  However, a 3T is recommended for finding MS lesions.  Make sure that MS protocal is used prior to having your MRI.

Also, when you had your blood tests were other autoimmune diseases, like lupus, ruled out?  What about Lyme's disease, did your doctor test you for that?  

Your vision problems bring up another issue.  Have you ever had a VEP to check to see if something was damaged in the central nervous system or optic nerves?  You may want to see an opthamologist or a neuro-opthamologist (or a different opthamologist than the one you've been to).

If you aren't getting anywhere with this doctor after you go over the MRI, maybe you should consider seeing an MS Specialist.  

Deb

[JulesL5S1]

Part 3 - the saga continues

2006 – Arizona – August - extreme fatigue starts (different than hypothyroid exhaustion)

2006 – Virginia – September and later - bouts of extreme fatigue.  Would get up fully alert and rested; within 2 hours exhausted; at times too tired to drive even at 10am or early afternoon; pulled over to rest.  Lab tests show thyroid levels are normal.

Thyroid – sluggish, slowed down, always tired
Now – fully alert to instant tired extreme

2006 Fall – Give up on “career”; take job position close to home

2006 Fall – started back to gym, walking on treadmill, quirky issue noted that I have to hold on to the treadmill to walk.  Otherwise too much wobbling back and forth, hitting sides.  Used to be able to walk without holding on at 3.2 mph, now have to hold on even at 2.0 mph.  

2006 Fall - Same problem on elliptical machine.  I try to find machines by the stationary bikes so that when I finish I can sit down on the bike until I can use my legs again.  However I can't cross my legs when sitting without using my hands to pick my leg up and put it over the over leg.  same problem, can't sit at bike machine because I have to pick my leg up to move it.  

Jan 2007 – fell going up stairs, ended up breaking a bone in my left foot – second toe from end, legs crumpled again

Fall 2007:  my office location is changed.  I am moved from what everyone refers to as the coldest office in the suite to the warmest office in the suite.  My overall health starts to dramatically decline  i.e. depression, weight gain, headaches, more noticeable and extreme dizziness and vertigo.  I find myself “holding on” to something with knuckles whitened, balance and gait significantly decline, fatigue is extreme

By Spring 2008 make doctor appointments – I am concerned I may be having mini strokes.  strokes would explain my balance problems, vision problems, arm/hand coordination problems however MRI of brain is clear

Spring 2008 – more vision problems – problems with unclear vision even with brand new prescription and full complete exam.  vision problems come and go

Spring 2008 – more vertigo – often can’t leave house

Spring 2008 – now problems with my arms/hands - Trouble holding silverware

Spring 2008 - Trouble opening door – key won’t get into lock. Problem with my hand/eye coordination

Spring 2008 - Trouble getting dressed – can’t do buttons

Spring 2008 – cut hair short – can no longer hold/control hair brush or hair dryer

Spring / Summer 2008 – noticing as I leave work at night that I weave back and forth between the walls, to walk straight I really have to concentrate and even then it is not always possible.  Looks like I am drunk - again, I don't drink alcohol at all!

Spring 2008 – I’m constantly bumping into walls, can’t walk a straight line

Spring 2008 – frequently dropping things

Spring 2008 - Bloody blister on left foot – never felt it – only became aware of it because of the blood on my sock.


Summer 2008 – Health decline forces me to give up my full time job – take part time position

June 2008 – stumbled / fell on driveway - another crumple? – severly sprained right ankle and tore ligaments

June 2008 – numbness around toes on right foot begins, bottom of foot feels wet

Severe migraine in July 2008 – very disoriented

Why the serious now, why didn’t I pursue earlier?
(1) Diagnosed with hypothyroidism in Fall 2000 (after move to new city) and started Synthroid.  This was at the same time as the ongoing back problems and third back surgery.  Decided/told to wait and see how my body responded to the synthroid and what problems went away with the 3rd surgery.
(2) Needed a medical clearance for work.  Didn’t want to pursue the problems.
(3) Told that nerves can take up to a year to heal.  I had the third back operation in Jan 2001 so I patiently waited.
(4) There was slow but steady progress for a while and then in Dec 2004 everything started downhill.


Possible:
I think I fell once or twice Spring 2008.  I was home sick with the “office crud”.  It doesn’t stick out because I was already sick and running a fever so maybe I fell because of that or because of something else.  i.e. my legs didn’t support me when I got out of bed.

Seeing neuro for the migraines/blindness in right eye.  blurted out to him that I thought I had MS (this was after the driveway fall) he discounted it, didn't take me seriously.  I gave him a timeline of symptom and will see if he even reads it by the next appt

Went to my PMP (primary care physician) and gave her a simplified timeline (thanks to info read on this site) also did not say that I though I had MS.  I'm just related all of the problems over the last 10 years and my growing concern that something isn't right and that I'm starting to doubt this all relates to my L5S1 back problem.  Now both legs are affected, there is no pain, and my hands/arms are affected also, not to mention my vision.  She is taking me seriously and has started tests.  blood tests were normal except for the elevated white blood count (slightly elevated).  Next week is back MRI with contrast.

[JulesL5S1]

Part 2 the timeline continues - now comes the fun part

- Dec 2004 (early 40's):  Got out of car (had been very stressed for 2-3 hours due to heavy snow and driving in that)  – unable to walk or move legs, no feeling, no pain either – over a week before full feeling restored.  Had to use crutches, couldn’t leave apartment. My mom was with me and I didn't want to panic her so I put on a positive spin.  I kept saying at least I'm not in pain.  (my mom had helped me with the 3 back surgeries,  lots of pain)  So even though both legs were numb, there was no pain.  Normally if I'm stressed and my back is acting up then there is pain, this no pain and no movement is a new experience but I prefer the no pain.

- Spring 2005 had my first episode of temporary blindness in my right eye w/headache on the right side.  Second episode soon afterward.  Went to eye doctor.  Full battery of tests.  Everything is normal.

- Problems with vision.  New prescription and new contacts but in spurts will go through multiple pairs due to unclear vision.  After my 3rd pair of contacts I just live through the blurriness until it resovles days later.

- Fall 2005:  both legs “fell asleep” during staff meeting.  No feeling in either leg.  Could barely walk – finally pins and needles feeling; very unsteady for remainder of day and had to take the next day off.  Had a friend go out walking with me at lunch – trying to “jump start” circulation.  Didn't make a difference.  She kept saying this wasn't normal and I kept saying "3 back operations, L5/S1 level....)

- Numbness in hands during staff meetings – unable to write/grip pen

2006 – fell in office , walked around desk and heading to door, fell – no warning, no pain, unable to move legs – over an hour before I could move at all - eventually rubbery feeling

Come and go problems – numbness in both feet periodically.  Decision points – walking home vs taking the bus.  Hard to walk with numbness in feet however equally hard to get on/off bus when my feet were numb.  When walking home, if the lighting was dim it was hard to walk, couldn’t sense the ground or see the ground.  Frequently shuffled my feet because if I picked my feet up to walk normally I couldn't.

[JulesL5S1]

here is the detailed information, even a little more than my journal page.  this is part 1

College Years 1981-1986 (early 20's):

- Frequently bumped into things/people/objects.  Friends and I made a joke of it.
- Fell after getting out of the hot tub at the swimming complex.  Developed a "fear of hot tubs", I stay away while others jump in.   P.S. I don't drink alcohol at all.

1989 (mid 20's):
- Fell again after getting out of a hot tub.  

1997-2000 (early 30's)
- Multiple episodes of “pins & needles” and “numbness” in legs/feet and arms/hands.  Very disconcerting.  I was living in a major city and walking everywhere.  So I couldn't understand why when I was so active my arms and legs kept 'falling asleep".  I could be using my arm and it would just "go to sleep".  

- Multiple episodes of dizziness and/or vertigo.  Very disconcerting.  Never fell but very frightening.  Aggravated by my movement but also happened if I wasn't moving at all.  Worse later in the day.  Went to Dr.'s - told it was anxiety.  I said the symptoms were causing anxiety NOT that anxiety was causing the symptoms.  

- one time event – SEVERE pain in one leg behind the knee.  Actually had first happened a few days earlier.  I was lying in bed, just woke up and stretched.  Severe pain behind a knee.  Like a stab or a lightening bolt going through.  Went away after several minutes.  No problems.  Then a few days later, same thing happened again, It was during the afternoon.  I hadn't done anything to warrant this - i.e. no exercise, nothing out of the ordinary.  (Note:  x-ray was normal and leg was examined for a clot which was negative.)  

- one time period - several days/weeks on/off.  Severe pain pushing in on my chest area.  It was a shortly after a major viral illness.  (Lots of tests - lungs fine, ribs fine, heart fine).  It was worse when I was lying down and the pain/pressure was severe enough to keep me awake.  (more due to worrying about the pain).  Again, told this was anxiety.  I'm doubtful and believe something is wrong but can't get doctors to believe me.

2000-2002 (late 30's):
- Jan 2000:  confirmed by MRI and surgery – herniated/ruptured disk at L5/S1 level.  Extreme pain, etc.  Operation Jan 2000

- Feb 2000:  confirmed by MRI and surgery – more material in spinal canal, another operation.

- March 2000 – physical therapy begins.  Physical therapist/Neurologist are pleased with progress in final report.  I was moving to a new city.  Actually I believe they were just relieved that I was moving because my case was puzzleing.  My recovery wasn't standard.  Some appts I would be much improved and then the next appt there would be severe problems.  Like no nerve response, no balance, etc.  Things that can't be faked.  It continue like that, we had no idea what my nerve response would show each time.  No steady progress.  

- July/Aug 2000 – move to new city - yeah back to air conditioning - problems with walking, balance, gait.  Physical therapy begins again, seeing new neuro.  Progress is minimal.  Identified by physical therapist that if I closed my eyes I lost my balance and would fall down.  Same problems with sometimes there is nerve response, sometimes not.  (Glory of internet - learn in 2008 that the neuro is/was a MS specialist and the physical therapist he sent me to worked primarily with MS patients and stroke victims.) Lots of comments by the PT if there was another dx in addition to the L5S1 disk problem.  Just that.  She finally scrapped the original set of PT work and switched to another set.  From recent research into MS, most of that PT work is what is described specifically for MS and helping patients learn to adapt.  I made a lot of progress with those exercises.  Still neuro not satisfied.  ordered another back MRI.  no surprise, more problems at L5S1.  Neuro was relieved to tell me that was the problem and referred me to a neurosurgeon for my 3rd back operation.

I know/believe that a major injury will not cause MS however I now wonder if the major injury "activated" MS and substantially interferred with my recover.

- Feb 2001 – pain gone, however balance and gait problems remain
Continue to have problems with “changing terrain” when walking.  I can walk on a sidewalk fine but if I come to a curb or stair I often have to stop and figure out to go up or down.  Give up on doctors at this point.  Many times off balance when I walk but now I just blame everything on the L5S1 disk.

2002 – 2004 new city (late 30's)

- Balance problems and gait problems continue.  I just accept all problems now as part of my back history.  However, only my left leg/foot were affected.  Right leg/foot are fine.

- Significant decline in “sensitivity” in my feet.  Both feet, not just the left that was affected by the L5/S1 disk.  Episode of darkness in parking lot.  It was dark and had been raining, when I noticed that I couldn't feel my feet or see the pavement and had no idea how I was standing up or how to walk.  No ability to use my eyes to sense the ground due to the darkness.  Very frightened.  Had to just shuffle my feet on the ground to reach my car.  Could not pick my feet up because I couldn't feel the ground at all.  No pain (with my back history, no pain is a blessing), just no sensation in either foot.  Hard even to drive because I couldn't feel my feet.

- Two unexplained falls, several months apart.  Walking one moment and on the ground the next.  Not so much a fall as my legs (both of them) crumpling underneath me.  falling somewhat forward as I was walking.  

- Another spa/hot tub fall – at a resort with hot water bath and cold water bath side by side.  Friends all in hot water bath and joking with me about why I wouldn't come to the hot water side.  Finally gave in (when will I learn), after getting out my legs crumpled underneath me.  Went/Fell into the cold water bath and everything eventually returned to normal.

2004 – 2006 new city again (note:  no air conditioning in apartments)

[sllowe]

Hi JulesL5S1,

I've not had a chance to review your timeline yet, but wanted to say hello, and welcome. I am Shelly, and I was dx'd w/MS last year.  I'm so glad to hear that your Neuro is taking you seriously! What great news to read this am!

I hope you like it here and we look forward to getting to know you better.  Hey, did you do up a timeline up for your Dr. because you read about it here? If so, YAY! I'm so glad to know that it's importance is noticable on the forum to new members.

See you around!
Shelly