Keeping Track

My

Time line/journal

Rarely succinct, sometimes rambling, but at least the dates, symptoms, and lifestyle changes are stored here for future reference.  Too much detail for the doctors, this is just for me.

Updated for the last time on:
08/19/2008

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prelude
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Wonko, DOB 4.30.1979.  I am overweight, and until recently, was a smoker.  Also, until recently, had poor eating habits.  I am currently working diligently to improve my diet, activity level, and weight.  Other than that, my health has been fine.  In general, I do not get sick outside of a cold or two per year.  

A notable exception, which my "gut instinct" feels set this while trip off, was late in March 2007.  I got bronchitis, ear infections, sinusidus (sp), all back to back (not really sure which one started the mess).  I was sick for a couple of months, though I don't recall the exact date that everything cleared up.  This wave of illness began days after my theses defense.  At the time everyone thought it was really funny, like my body somehow knew to hold out for just long enough for me to defend, then gave out.  Shortly after I got better, I moved from PA to MD.

Now, here are the changes I've noticed that have lead me to many doctors, but few answers:
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Symptom:  Spurious odd electrical sensations, very brief.  If I was waving my hands, then I'd get short little "shock-like" feelings.  Also a lot around my neck.  Only in hind sight do I think these sensations may be associated with my current state.  At the time, I thought nothing of it.
Started:      July-August 07, around the same time I started my new position.
Ended:  Stopped noticing in Sept. 07

Symptom:  Sun burn feeling on cheeks, though no real sunburn or discoloration
Started: Oct. 07 Right on the spots where football players but that black stuff, both sides.  Felt weird, but not alarming.  Noticed it most of the time.  I would wake up and be like "really? still?"

Symptom:  Tingling/Pins/Needles
Started: Varies.  Locations and severity change over time.

Oct. 07: Started that my face would tingle, just for a few moments, while I drank my morning coffee.  I figured I was just getting older, maybe sensitive to caffeine.  Was not concerned.  Around this time, also noticed that my hands and feet "fell asleep" much easier than they used to.  But I could shake it out.  The intermittent tingling and "falling asleep" slowly become more persistent until my face/hands/feet all had a nearly constant tingle.  But it was mild, not even too distracting.  
              
~Mid Jan '08:  Not sure of exact dates, but the tingling started to increase in intensity for periods of time on the order of hours.  Crept from hands/feet to arms/legs.  Feeling in face spread, too, to include lips and tongue.

Jan 17th 08:  Strongest tingling to date.  Went to health center at work.  Did not have a primary care doc in area yet.  Dr. checked me and said nothing indicated immediate danger (I was concerned about stroke) so I went back to work and set up a local primary care dr.

Jan 24th 08:  Saw PCP for the 1st time.  She ordered blood work.  

Symptom:  Heavy, clunky, clumsy feeling in limbs
Started: Late Jan 08.  I have full movement, but I feel clumsy, and my arms feel like they are bigger or weigh more.  My walk feels off, but still at 97%.  Nothing so bad that I could not "appear" normal, but this is around when I started to listen to my body that something was amiss.

Jan 28th 08:  Went back to PCP because more symptoms appeared over the weekend, and tingling continued to intensify and spread.  Blood work results (including B12, Lyme, thyroid) all came back normal.  Referred to neurologist.

Early Feb 08:  Saw neurologist.  He ordered MRI of brain w and wo contrast, but insurance only approved without.  I am told the results showed "spots," but nothing to do with my symptoms.  My nerve conduction/EMG tests are unremarkable.  He orders the MRI again, this time insurance approved w and wo contrast for brain and c-spine.

Feb 06, 2008:  After exercising on my elliptical trainer for 30 minutes, I experience strongest tingling to date.  For over 8 hours, I cannot relax because tingling is so strong.    

Feb 07, 2008:  I start to experience an increase in my symptoms when I lie down.  I need to sleep propped up for several days.

Feb 12:  MRI's of brain, c-spine w and wo are done.  Spots on brain MRI do not light up with contrast. Neurologist tells me I am fine.  This is either an old virus, or anxiety.

Mid Feb 2008:  Symptoms lessen.  By Feb 20th, I feel almost normal.  I still get tingling, but only after I exercise, do dishes, etc.  If I exercise, it lasts maybe up to 30 minutes, wash dishes, only lasts <5 minutes.  I feel "changed" by the event, but am optimistic that all traces will go away.  

Symptom:  My right thumb feels stiff since all of this.  That and the occasional tingling are the only "reminders" of the earlier events.

Feb 26th:  PCP does EKG, heart echo.  All is well with the ticker.

March 9-13th 08:  Travel to New Orleans for work.  No problems with symptoms despite increased stress in preparing for my talk.  Meeting is successful, I feel good.

March 22, 08:  Something is going on, but I am not sure what it is.  I've always been prone to ear infections.  My ear hurts a little, but not that much, and I think I might have a fever.  I don't go to the dr., since I don't seem that sick.  

March 23, 08:  Feel just awful!  Like I have the flu (achy, tired) but not with the traditional flu stomach symptoms.  Am very upset because tingling comes back!  Right away, it is more spread out and strong.  Moves around, but is always in face/hands/feet.  When I lie down, I can feel it move up from my arms/legs into my torso, and can be almost "covered."  Upright, it stays more in place in my extremeties.  The tinglingin my face has spread INSIDE of my head.  This both scares me and wrecks my concentration.  This condition persists for just 2-3 days, but I mke an appt. to see the neurologist, thinking that this recurrence/progression is significant.

Symptom:  Involuntary twitching in arms, legs, butt.
Start:         March 23.  
I can feel these involuntary muscles movements through my skin.  Again, gets worse lying down.  

Symptom:  Cramp.  Right calf, weird little knot that can be felt.  Can't stretch/work it out.
Start:         March 23. Lasts for more than 1 week.

March 26 08:  See neurologist.  He tells me "you think you have a disease, but you do not."  He tells me not to follow up with him, eve if my symptoms recur/progress.  He recommends Prozac.

April 1, 08:  Symptoms again seem to go away, except for short tingling immediately after exercise, etc. Not happy with my neurologist, but am very happy to be feeling better.  Maybe this thing just wanted one last hurrah on its way out of town.

April 6-10 08: Travel again for work.  Give my talk on Tues.  I am feeling pretty good, meet with collaborators, only a little tingling, esp. when outside (it is ~80 F and HUMID).  But by April 9th, not feeling so good!  April 10th, in airport for hours due to weather delay.  Feeling heavy and tingling, glad I am going home!

April 12th:  Is this my fault?  I quit smoking (after 15 years), and am working on improving my diet.  Still holding back on exercise since it can make symptoms stronger and I am already feeling pretty bad.

April 9-21st 08:  Strong tingling all over, esp. face/hands/feet but can be just about anywhere.  Horrible tingling feeling in my head, I cannot concentrate.  Twitching in arms/legs/butt.   All of my symptoms worsen when I lie down.  Gets worse within minutes of lying down, gets better within minutes of getting up.  I am not using my elliptical because I already feel bad and it makes my symptoms get stronger.  

By April 20th, I have consulted two therapists, once is an employee assistance counselor at work, the other is a psychologist I contacted.  I tell them of my problems and my neurologist’s opinion that I need Prozac.   Both agree I need a new neurologist and do not see how this could be depression or anxiety, as I can be experiencing my symptoms in the absence of feelings of anxiousness, and am not depressed.

April 21, 08:  I go back to my PCP.  I ask what else this could be?  Neurologist says it is not neurological, but emotional. Therapists say it is not emotional, but physical.  PCP was very respectful of my concerns.  We review the timeline of my appts. to see her, and my tests.  I ask if this could be a back problem, but she says if it was, then my whole back would have problems since my symptoms are from head to foot.  She cannot think of any other conditions to test for, and says I should see another neurologist.

April 21-25 08: I cannot concentrate because of tingling/buzzing in head.  I can appear normal, but feel under-coordinated.  I notice ongoing heat sensitivity.

April 26 08:  I think it is going away?  I don't feel 100%, but I notice improvements.  The tingling in my head is lessening, so I am trying to get back in the swing at work.  Still notice that if I am tired, my symptoms feel worse.  Still notice if I lie down, my symptoms feel worse.  Still notice temp. Effects.  Still feel funny/different, but
it is a LOT better.

May 1st 08:  See Neuro #2.  My neuro exam is normal.  Neuro #2 schedules another nerve conduction and EMG.  He also says I may benefit from anti-depressants.  I mention that I consulted two therapists, both said I am not depressed and my symptoms are not anxiety based.  He says that an off-label use for anti-depressants is to reduce paresthesias.  I tell him I'll think about it.  

May 7th 08:  Lots of my symptoms are dying down again!!!  Heat, lying down still aggravates the problems, but even that sensitivity seems to be lessening.  Still lots of strange feeling.  Also noticing some weird vision and "trails" out of my right eye.  T

May 12th 08:  Neuro #2 did 2nd nerve conduction and EMG test.  Still no carpal tunnel

I tell him that my symptoms have lessened, though I can still trigger them to light up by exercising or through external heat exposure.  He asks to what do I attribute the improvement.  I say it could just be a coincidence, since my first episode cleared up without any particular help.  But I also mention I quit smoking and my efforts to eat better.  He tells me not to worry, not to be concerned about the heat sensitivity or residual symptoms.  He is glad to hear about my life style modifications and wants to follow up in about 2 months.  Appt. is made for July 21st.

May 13th 08:  Mostly back to feeling better.  Still heat sensitive.  I continue to notice if I don't sleep well, I feel more symptoms the next day.  Also getting a lot of the "sunburn" feeling on my face again, like I had last fall.  Biggest bummer is that I feel like it is so hard to carry things now, even light items cause my tingling/burning to light up within moments.  I am back to using my elliptical several times per week.


May 14th 08: Hmmm.  Odd sensations in face, particularly right on top of my cheeks, is persistent.  Lots of sunburn feeling, some tingliness too.  Still WAY better than I was in the midst of the last episode, maybe I am just bummed that I am not feeling 100% better, and I am not seeing monotinic improvement day by day.  AM I GETTING BETTER OR NOT?

May 15th 08:  Continue to have residual symptoms.  In particular, sunburn-like sensation in cheeks, tingling in face/hands/feet, a patch on my left leg above my knee gets partially numb off and on.  The tingling seems to be moving into more of a burning/dull pain mode.  Not too happy about that...

May 16th 08: I have gone almost 5 weeks with:
No smoking
No drinking (alcohol)
No processed food (or very very little!  I even bake my own bread now.)
No art. sweetener
No red meat
Much less eggs/dairy/fish/poultry
Much more fruit/veg/whole food
Much more exercise.  

I finally got up the nerve to start weighing myself, and am down 8 lbs so far.  I feel as though the doctors can not help me, and also that they are more dismissive due to my size.  So I need to step up and fight for my health.

May 20th I go to work, but I can not think at all.  For lack of a better comparison, it feels like I have a bad hangover, even though I have not had a drink in over a month now.  My head feels "full" and tingly.  Also the sunburn feeling in my face is strong, and I think my face even looked red when I came out of the ladies room, but maybe I am just imaging that since it feels so hot?  My eyes feel like they are not working as a pair, but I think I am just overall distracted by all the sensations.

May 21, May 22nd  I take off work.  I just can't stand it.  I feel awful and like I am getting behind, but I can't think with the tingling in my head and burning in my face.  I know I feel worse if I don't sleep enough, so I am trying to just rest a lot in hopes that this build up some strength.
Lying down still makes my symptoms worse, and so it is hard to rest and relax without getting a lot of tingling/burning/dull PAIN in my limbs.

May 23rd:  Lots of burning on my face, tingling/pain in my legs, and weak arms.  Oh, and I lost 2 pounds this week.  It's a work in progress...

Late May-June 5th 08:  A lot less stuff in my hands and legs.  Oddly, I still get some vision trails and see flashing lights upon moving my eyes in dim settings.  Also, the EAR PAIN that I first noted on the 22nd is back, it has been growing from mild to moderate for the last couple of weeks.  

At my PCP, I learned my BP is down to 114/72!  It was not my regular doc, but I asked her about my situation.  She agrees that stress/depression don't seem to be a reasonable source.  She said I should be happy my tests are fine and keep working with the diet and exercise.  She was nice, but the decongestant suggestion after weeks of ear pain was less then reassuring...


I realize that I am NOT better, my symptoms have just "shifted" so that different ones are in the spotlight.  My head seems to be the most affected area right now.  "Sunburn," tingling eye lids, eye flashes, and now my eyes hurt too esp. when I move them, ear pain,  tingling in my head, some lip tingling.  I do have some pain in my arms and legs, and my hands seem to have no endurance.  If I do something dexterous, my fingers/hands start to burn within moment.  I still also get some strong twitches, perhaps even jerks, but only a few times a day.  My legs cramp sometimes, esp. if the AC gets to them.

June 6th:  Weighing in at -13lbs total.  At work, I started noticing ghosts or shadow images in text.  The optha. said my retinas look fine, and has no explanation for the flashing.  She notices my eye pain when she has me move my eyes and is concerned, but can't offer an answer.  I didn't mention the shadow letters or other undiagnosed symptoms that I have, for fear that she would think I was just a malingerer or something.  

June  18th 2008:  I went back to the opthamologist on June 9th and told her more of the story, and she recommended a neuo-optha.  Appt is set for June 26th.  As of June 13th I'm down a total of 16 lbs.  I continue to do what I can to eat well and exercise.   Still have mild double vision.  Still have eye pain.  I've had a lot of heaviness the last several days.  It feels like there is more gravity acting on me.  The last couple of nights I have been woken up by symptoms, and had more of a strong and stabbing eye pain and the worst so far heaviness/weakness in extremities, esp. right arm and leg.  Very concerning.  I feel like I have ankle and wrist weights on.  

I NEED to find a doctor who I trust is listening to me and who will help me.  This is just not something I seem to be able to take care of myself through lifestyle, though I will do my best to keep up on that front!


June 27th 2008:  Saw a 3rd neuro yesterday , and he may be a keeper.  He reviewed my MRIs and does not agree with #1 that the 7-8 lesions (esp. the 2 larger ones) should be ignored given my symptoms and history.  He called them lesions, not spots.  So the time has come for a 2nd round of tests: MRIs, blood, and LP if the MRI is unchanged.  I felt like he had been reading my posts, he said the things I'd gone mad over wondering why the others didn't say them.  It is a huge boost to my mood to have this doctor.  Symptomatically, I am still uncomfortable.  I got an Rx for Neurotontin, and will try that.  I continue to feel heavy/clunky, have terrible concentration, ear pain, double vision, tingling brain feeling, burning face/hands/feet.  I've lost 20 lbs to date.

July 12th 2008:  Things are mostly stable.  Symptoms about the same.  I have evidence that the neurontin is helping, as I can now sleep through the night.  I had a repeat brain MRI, and was told over the phone that no changes were there.  I am getting an LP, but really doubt I will have answers.  

I've lost a total of 23.5 lbs to date.  Every week at weigh in I have either lost or stayed the same, though it's a lot of work!  I'm struggling a lot with work, I think I need to make it very cleay to my neuro how much my symptoms interfere with my concentration, and hope he can offer something.  I just want to feel like myself again!

July 21st 2008:  Since the last update, I've noticed a huge improvement.  My neuro says this can be attributed to neruontin, which I've been taking for many weeks.  His outlook is that this is a one time event, and that I will totally recover and never need to worry about this again!  The plan is for me to continue on the med until all of the sensations stop, wait a bit, then taper off.  I see him for follow up in about 3 months.  I've had some really good days.  The creepy feeling inside of my head is gone, and I am immediately able to focus more, work better, and think less about all of this.  Feeling better allows me to appreciate just how cr@ppy I was feeling before.  Today is a little bit worse, I felt more burning than I had in recent days, but I have my period and will blame that for now!  I am still amazed...I got all the results from my LP were normal, but the banding test was not done yet.

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epilogue
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July 22nd 2008:  Since I am hoping to never feel the awful sensations listed above ever again, and since my neurologist has told me there is no reason to think of this series of events as anything progressive or recurring, this will be my final update.  I am very optimistic, but also realistic.  Though I am a lot better, I am still changed.  Nothing feels quite the same anymore.  My hands are still harder to bend, esp. in the thumbs.  I am still heat sensitive.  Leaving work today, when I got into my hot car, the back of my head started to tingle.  I really want to think it is gone, or will be gone, soon.  But if what the doctor says is correct, then it should TOTALLY go away.  For now I am sticking with his plan to keep taking the neurontin and hope this passes and I never again need to go through this.  I really do hope it can go away.  

The next step is for me to accept that I have lost several months to this.  Career wise, personally, spiritually, all aspects of my life have existed in the shadow of this for the calender year of 2008.  I am not even sure how to fully appreciate and move on from this.  I know I am lucky, but I also feel the need to grieve for all of the time I spent terrified, in pain, with no doctor to help me.  Much of the support I got came from the forum, and reading about others was very therapeutic for me, to not be alone.  Now, some days I am not sure how to feel.  This experience has changed me so much that I feel I need to get reacquainted with myself.  I suppose that is why I consider this an ideal time to ensure that the important changes to my lifestyle listed above are permanent, and not fleeting.  So I want to end this chapter, and begin a new one focusing more on my journey toward better health.  I hope to become comfortable with my body again, to learn better fundamentals of nutrition (I think my self-teachings from years ago are out of date and misguided), and I hope to be happy and healthy for a long time.

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Post-epilogue
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August 19th 2008 Sheesh.  
Around August 7th, I had to stop taking neurontin because of intense feelings of pressure and burning in my head.  The pain and aftermath were such that I missed 3 days of work, and spent two as "walking wounded," that is I showed up but accomplished nothing.  

I returned to my PCP and decided to try prednisone.  5 days at 60 mg, 5 at 40, 5 at 20.  I am on the 2nd day at 20 mg.  The steroids gave me the energy to work through my symptoms, but overall I have felt just awful.  Strong tingling and burning, leg cramps, mild double vision/eye pain, etc.  I resumed neurontin, but only at 800 mg/day, and don't want to go up because of what happened before (at 1200 mg/day).  To date, my weight loss is  32 lbs.  I still do not drink or smoke, no art. sweeteners, no processed food, and am now a vegetarian leaning on vegan.  I try to exercise twice a day, and often do.

Most of my issues are sensory.  However, my right leg bothers me.  The calf cramps a lot, and the foot gets strong burning and tingling, and it can feel weird to move it.  As noted above, my right thumb never got better since Jan, and while it is still the worst, I have a weird stiffness in both hands (worst in thumbs, least in pinkies).  I ongoingly experience that if I attempt something dexterous, my hands start to burn uncomfortably.  I had to stop playing a lot of my video games!

I have been told that there is nothing wrong with me, and that if I can just get my nerves to "shut up," then I will be fine.  Meanwhile, it has been over a year since I noticed the onset of this, and while other people in the world have much bigger problems, I am frustrated and really want some sort of resolution.  I am confused and do not know what to do about my situation.