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Diagnostic journey

Aug 10, 2008 - 1 comments

i, I'm hbananas.  I'm in my middle 50's.  I have been taking medication for hypertension since I was about 33.  I have high cholesterol, and I take statins.  I have attention deficit disorder and depression, so I've been on Wellbutrin for 10+ years.  I've had impaired fasting blood glucose a few times.  I'm overweight, so when you put all that stuff together, I'm one of those metabolic syndrome/prediabetic types.  I have a fatty liver and have had elevated liver enzymes a couple of times, so I can't have liquor.  I have never smoked, and I have allergies to lots of pollens, molds, and scents.

Labor day weekend 2007:  My husband and I were at an outdoor festival.  The temperature was low 80's.  I got a little hot, and suddenly I thought I was going to pass out.  I had to go to the bathroom frequently during the day, and I also had plenty of n/a beer to drink, since it was hot.   While waiting for the bus, which was very late, I had to go, but I could hold it until we got home.  Oddly, by the time we did get home, I didn't need to go badly at all.  That night I came down with a bad UTI.

October 2007:  After a long plane flight, when I got to the hotel, I noticed the left side of my abdomen was feeling tingly or like it was vibrating.  Like my cell phone was ringing, but I didn't have it with me.  It also felt kind of numb.  I thought that sitting still with my jeans digging into my waist was the cause.  Turns out that didn't go away for several months.  Almost a week later, when I got home, my hands and feet were also doing the same thing.

December 2007:  I finally went to my PCP who is wonderful.  She ordered beaucoup tests.  I had an EMG and nerve conduction test on my arms and legs. They were normal. The doctor's report said since it's not peripheral, and since I don't do well in heat, maybe it's something central.  PCP sent me for a brain MRI on a .3T open machine.  It said I have one small lesion in the anterior insular region on the left side.

Flashback time!  1999 or 2000, I had a sudden vision change in my right eye.  It was like someone had stuck a gray blob in the mid-lower part of my vision, and I had to "look around" it.  Had an MRI and opthalmologist exam, but nothing showed.  It either went away, or I got good at working around it, because it only came back when I was really tired, and has ever since.  It's like I accidentally looked at the sun for a bit, and the shadow remains for a while when I look away.

2005 & 2006:  Every now and then I would get sudden, stabbing pains in my feet.  They only lasted a few seconds at a time, and it wouldn't keep up for more than an hour or two.  There was also a time in 2006 or 2007 when my left thigh and butt cheek were doing the numb and tingly thing, but I forgot about it until we started the MS investigation.

January 2008:  I went to my neurologist because of the one brain lesion.  She said she didn't want to put me through a LP for one small lesion, so let's watch how it goes.  My PCP called and said "I wanted you to have a c-spine MRI, too, and they didn't do it!"  Went for that on a 1.5T closed machine.  It said I had three small spinal lesions, so the neurologist did do the LP.  I have elevated white blood cells, but not elevated IgG and no oligoclonal bands.  Inflammation, but nothing definitely MS-ish.  Also negative Lyme tests.  The neurologist said I have transverse myelitis, probably caused by a viral infection.  She wanted me to have new MRIs and see her again in April.

April 2008:  The stomach numbness has almost gone entirely.  The hands and feet have calmed down--still worse on the left side, but more now a feeling like I walked into a spider web and haven't got the web all wiped off yet.  I found a place with a 3T MRI and had new films.  The radiologist's report says punctate brain lesions paraventricular adjacent to frontal horns.  It also says I have dilated Virchow-Robins spaces, which are an indicator of atrophy.  Only two of the previously noted spinal lesions are mentioned, and the larger of the two has very mild enhancement with contrast.  My neurologist was on maternity leave, so I saw one of her partners.  He said the spinal ones are still TM, and the brain ones are age-related vascular ones, since I have hypertension.  Come back in October when your regular neuro is back to work.

August 2008:  I called to make the October appointment, since I need to get my hubby to lock into a date.  My neuro might not be coming back to the practice at all.  I made an October appointment with a neurologist who is on the membership list of the Consortium of Multiple Sclerosis Centers.  Below are summaries of my two sets of MRI radiologist reports:

Brain Dec 2007 0.3 T MRI (Yes, you read that right 3/10th of a T)
Ventricals, sulci & basilar cisterns normal in caliber.  Small singular white matter lesion in the insular white matter on the left anteriorly.  Remaining white matter tracks unremarkable.  No brain mass or abnormal enhancement identified following contrast administration.

Brain Apr 2008 3 T MRI
Dilated Virchow-Robin spaces within right and left basal ganglia.  Ventricals and basal cisterns unremarkable.  A punctuate area of increased signal in the paraventricular white matter adjacent to the left frontal horn and in the white matter adjacent to the frontal horns bilaterally.  This is very minimal.  Post contrast show no abnormal enhancement.  Impression:  Minimal white matter hyperintensities in the paraventricular white matter.  These may be age-related findings.  They are not specific or suggestive of MS by MRI criteria.

C-Spine Jan 2008 1.5 T MRI
Multiple areas of increased T2 signal within the cord, no enhancement with contrast:
C3-C4  interspace small focus in left lateral aspect
C4-C5 interspace, focus of abnormal signal noted in right lateral
C6-C7 vertebral bodies, larger patchy area of abnormal signal.
Impression:  Multiple areas of increased T2 signal within the cervical cord suspicious for a demyelinating process, such as MS.

C-Spine April 2008 3 T MRI:
C4-C5 No definite signal abnormal seen sagittal images.  On right posterolateral aspect of the spinal cord a small area of hyperintensity appears to be present measuring 1.4mm without expansion or deformity.
C6-C7:  Hyperintensity seen in central aspect of cord extending to the anterior central aspect.  This area measures 4.6mm x 3.5 mm x 10.9 mm in AP, transverse, and craniocaudad dimensions respectively.
T1-T2: Patient appears to have a left extraforaminal Tarlov cyst.
Post contrast images show minimal enhancement in the area of hyperintensity at C6-C7.  No other areas of abnormal enhancement seen.

Impression:an area of mild hyperintensity with very mild enhancement within cervical cord at C6-7 and a small area of hyperintensity within the right posterolateral aspect of the thecal sac at C4 level.  These do not cause cord expansion and do not suggest a neoplastic process.  This could represent a demyelinating process, or gliosis.  No surrounding edema.  Correlation with prior studies and short-term follow-up is suggested.

October, 2008 first visit with a neurologist specializing in MS:
Wow.  He was so thorough.  First his nurse practitioner spent a long time with me going over my records and history.  The doctor looked at my MRIs and then gave me a really complete neuro exam and asked me a lot of questions.  He's repeating practically everything because none of it meets his standards:

Sleep Study, because my prior one didn't track arousal events, and he has done a study correlating sleep disorders and MS
Brain and Cervical MRI w/wo contrast, their MRI center and protocol, their neuroradiologist reading it.  (Not a 3T machine, but he said my prior 3T study was done by people used to looking for stuff to operate on, and on equipment with software designed for that purpose.)
Thoracic MRI--not done before, no contrast.
Neuro-opthalmologist consult--not done before
SSER--not done before
Neuropsychologist--not done before
Blood work for ESR, C-reactive protein, and neuromyelitis optica antibodies.  Haven't had those things done lately, or the antibody one ever.  I always have scary high c-reactive protein, and have had high sed rates before. Just read a blurb on the neuromyelitis optica test, and that's to rule out Devic's.

He had me walk toe-to-heel backwards with my eyes shut.  Can't do it.  Can barely do it with my eyes shut forward, but I don't have trouble standing still with my eyes shut.  Tried it out on hubby, and he can do all of them.

Babinski--my prior neurologist barely tickled my feet.  This guy dug in hard, several times.  Hubby says my toes went up on each foot at least once, but he couldn't get it to repeat.  He poked me with a safety pin and tried to get me to tell the difference between the pointy end and the curly end.  Good and bad in patchy places on hands and feet, arms and legs.  He had me shut my eyes, and moved my big toes, asked me to tell him what direction he was moving it, if any.  Hubby says I failed fairly badly on that one.

He seems to be leaning strongly toward calling it MS.  We're doing all this lab stuff over the next few weeks, and I'll have my follow-up appt with him very early in November.

I saw the MS neurologist, neuropsychologist, and nurse practitioner today.  There is an entry in my journal with the prior stuff.

No new or enhancing lesions anywhere.  The few punctate ones on my 3T brain MRI don't show on the 1.5T one taken with MS protocol, and the neuroradiologist doesn't mention any.  I still have the two in my cervical spine.  Nothing interesting in my thoracic.  The nurse practitioner went over both sets and showed me what the neurologist and radiologist had been talking about.

My SSER is normal.  The scars in my spine aren't bad enough to affect it.  My bloodwork for inflammation and neuromyelitis optica is normal.

There is no explanation for my eye problem.   I have a scotoma (small) that's always present, and sometimes I see ghost images of things when I look from one place to another.  My retina is just dandy.  I'm to keep track of the "bad eye days" to see if there is a pattern.  Maybe it really is a migraine, just like they told me 9 years ago.

My extreme fatigue is being chalked up to the sleep apnea, which I hope the CPAP will fix.  It will also cure my high blood pressure, impaired fasting glucose, obesity, nighttime urinary frequency, wrinkles, zits, dull hair and yellow teeth, and give me the ability to tap dance and play the piano.

The paresthesias, and my  urge incontinence and constipation are being attributed to the damage in my c-spine, which is permanent.  Good thing the symptoms are slight.

He had me do the backwards tandem walk with eyes shut, and I can actually do a few steps.  Gets better with practice.

I did the MSFC (25-foot walk, 9-hole peg test, paced 3-second serial addition) for a baseline with the neuropsychologist, and all was good.

I'm to go for a follow up visit to the psychologist and the nurse practitioner in January.  Meanwhile, now that I have been told by an actual MS specialist, following a truly thorough exam, that I don't have it, I'm going to believe it.  I'm counting on the CPAP to improve my energy, and since my hubby has now been told that he's also prediabetic, we're not going to have bad things around the house any more.  We're probably getting bikes, too.

Side note--cool sign on the window at the MS specialist's office:

                          "Brains are soft.  Helmets are hard.  Use both."

11/27/08 Still waiting to get my CPAP machine, which was prescribed 3 weeks ago.  The resp. tech. thought I was coming to the main office instead of the one closer to my home, so he stood me up for my appointment.  Really ticked me off, since I ride a bus, and had to wait half an hour in the cold for the next one to come along after I got off and found nobody at the office.  I have since had the prescription transferred to a different DME company, and it had to get recertified by my insurance company.  I'll get it next week.

I'm still not completely convinced about the TM thing.  My c-spine lesions are not of the proper type for TM.  What I should have is one big (over half the diameter, and covering 3-8 vertebral segments) thoracic lesion instead of 2-3 very small (<1 to 2 segments, < 1/3 cross section) cervical lesions with no cord swelling.  Symptoms should be more motor than sensory, and should be more severe.  Furthermore, idiopathic TM strikes between 1 and 5 people per million population per year.  That's pretty rare.  If there are 15,000 neurologists in the US, each one should only see a case every 10 years and be very, very surprised.  At my initial appointment with the MS specialist, he told me that two months between a known illness and onset of TM symptoms is too long, and it doesn't take into account that I had the left leg/hip thing about a year earlier.  Or the stabbing pains in my feet.

But the normal SSER, VEP, LP, Optical Coherence Tomography, and my non-specific disappearing brain lesions point against MS, so I'll buy the TM diagnosis until something changes.

December 2008:  Got the CPAP.  After two weeks, I think I've finally learned to sleep on my side in the mask.  I have never disliked the air blowing in, especially the humidifier, now that it's winter.  The only trouble is when I have to go to the bathroom, it's sit up, turn off the machine, remove the mask, go potty, come back, put the mask on, turn on the machine, lie down,  readjust the mask, swivel the hose so it's not squished against the headboard, go back to sleep.  And the exhaust from the mask blows cold air right in my husband's face.  Right now we're sleeping apart, because he has a bad cold, and I've been learning how to sleep again.

January 2009:  CPAP is a gift from Heaven.  I tore my hose disconneccting it from the mask one Saturday, and when I bought the new one it had (drum roll) a quick-connect adapter.  Now I just pull the hose off the machine, drape it around my neck, go potty, re-connect and go right back to sleep.  I no longer fall asleep during the day.  Hubby has learned how to ignore the breeze.

Had a followup neuro appointment.  I had another MSFC with the neuropsychologist.  the 9-hole peg test was ever so slightly slower than 3 months ago, and I knocked a peg out of the dish 2 times.  Funny, because I was practically shaking last time, since I was afraid it would turn out to be D-Day.  My 25-foot walk is a little faster, and I continue to do well on the paced serial addition.  He said he'd like to do a baseline more in-depth cog test, but on the advice of the nurse practitioner, we're not going to do that unless I start having problems.  Besides, since he is a psychologist, I have to pay for the whole thing unless I go through the whole pre-cert garbage, and he might not even be a provider in my new plan.  They didn't even schedule me for another MSFC with my next appointment.

My appointment with the ARNP was mostly just going over how the CPAP is helping with the fatigue, and how my symptoms have been since my last visit.  I was supposed to keep track of the eye troubles, and really, I never have trouble for more than a day, and sometimes just half a day.  He said my neuro-opth report was clean, so if I have ever had ON, the damage is so slight as not to affect the VEP, so there's nothing more to look for there.

Paresthesias come and go.  I had a couple of weeks this month where there was nothing, but it's back a bit now.  Minor cramping of my right calf that comes and goes.  I mentioned how the constipation was bothering me, so he spent a bunch of time going over each of my medicines, several of which can be blamed.  However, I've been taking them all a long time, and I swear the timing goes along with my spinal stuff.  I'll just bring it up with my PCP when I see her in March and keep experimenting with home remedies.

I'm to return in 6 months, unless something new comes up or something old gets much worse.  Then we'll decide if it's time for new MRIs.  He said if I need an appointment, to insist on being seen right away, as I'm a possible MS patient.  That's slightly news-ey to me, since I thought I was the only one who still thought it was a possibility.

March, 2009.  Visited my PCP.  She ordered blood work to rule out metabolic reasons for my spastic leg, and she's sending me to a physical therapist for urinary urge incontinence evaluation.  She also put me on Miralax--just keep taking it until things seem normal, then back off to a couple of times a week.  Got records from my neurologist that made me want to pursue finding out more about my eye symptoms, so I'm writing the opth I saw way back 10 years ago to see if he can shed any light.

April, 2009.  I got the strangest thing in the mail today--an invitation from my MS neuro's office to see if I qualify and want to participate in a drug trial for MS neuropathic pain.  The study site is I've had a scheduler there say "since you have MS" when making an appointment, but I guessed it was just because I was making the appointment with the MS nurse practitioner specialist.  I was pretty much thinking they were convinced it was TM forever until my last appointment, when the NP said to make sure I'm seen quickly if something changes, since I'm possible MS.

In looking at my records I requested, the notes from my last visit lists 1) MS, along with 2) unspecified causes of encephalitis, myelitis and encephalomyelitis (with date of onset a year after actual), 3) visual field defect, and 4) obstructive sleep apnea in the "Problems" category, with "Chief Complaint" being followup of the latter three.  My last two appointments have been since they adopted an automated records system, utilizing notebook computers during office visits.

Under the Past Medical History part of the record, is a list of conditions that have "yes" answers.  Most are what I remember checking off on their intake form, except for the one labeled Dementia or Alzheimer's.  (Unless I checked it, and I don't remember because of my dementia.)  Seriously, I may have said something about being a little more forgetful, but it wasn't important enough to make it into the notes they made at my first visit before switching to this system.  They also seem to have removed or replaced a few of my organs in the surgical history.

At my first visit, they looked hard at my 3T MRI films from April 08, but didn't inquire about the lesser January ones I had on CDs with me.  Yet, in the notes there is mention of my previous neuro saying "there is faint enhancement as before" with regard to the April MRI, but no mention of any prior enhancement in the January ones on the radiologist's report.  This discrepancy bothers them, just like it bothered me.  However, I don't think my new doctor knew I had the prior ones with me at that visit.  Would there be any point in asking them to take a look at them now?  They do have the radiologist reports.  On my newest ones taken in October, the neuroradiologist who works for that practice doesn't mention one of my two spinal lesions, but the neurologist or the NP wrote that it's still there on the October films.  Kinda makes ya wonder why they need the radiologist.

I did write to the Opthalmalogist I saw ten years ago when the eye trouble started, but haven't heard anything back yet.

My PCP has me on Miralax, and it seems to be actually working.  She's sending me to a physical therapist for a urinary urge incontinence evaluation and program, so we'll see how that goes.  (Get it, goes?)

June 2009  Started having a new paresthesia in the middle of my back, so back to see the neuro's NP.  New cervical and thoracic MRIs.  No new or enhancing lesions, but I have a T7-T8 herniated disc.  Don't know if that is the cause of the new paresthesias, but it got me into physical therapy to strengthen that area of my back, which is great since I'm a dedicated sloucher.

I never got the records from the ophthalmalogist from years ago.  They pulled my file, sent a report to my old address, and then lost my file.  They never got the report returned in the mail.  I then called the hospital where I had the MRI and did get a report from them.  The scotoma appeared in 1997.  At that time, my MRI had no lesions, the optic nerves and chiasm were clear, and there was a vague area of increased signal in the left cerebral hemisphere that was "probably artifact."

I'm not due to go back to the neuro until a year from my last visit unless something changes, so I'll give them the old MRI report then.

July 2009:  I have begun having dizzy spells, particularly when getting up from a chair, or going from a brightly-lit to darker place.  These last a few seconds.  I began taking my blood pressure daily, and found that it is a bit lower than it has been in the past.

August 2009:  Started off alone on a 3-hour road trip, and began feeling dizzy in the car.  Went to a clinic in the nearest town, where my BP was 160/100.  I had eaten a salty snack in an effort to raise my BP, and I guess it worked.  I had also probably missed one of my BP meds, so the nurse practitioner I saw gave me a half dose and sent me back home.  Went to my husband's PCP and he told me to split my two BP meds into morning and evening and see how it goes.  Did blood work, nothing interesting there.  Two weeks later, I got dizzy driving again, so called him back questioning whether he wanted to see me again, or should I see the neurologist.  He said to go to the neuro.

Sep 2009: Saw the MS ARNP about the dizziness.  He did a good test of the blood pressure lying down, standing, standing after a few minutes, and it didn't go down much. Ordered an EEG and a 24-hr Holter monitor.  The Holter is normal-got a postcard in the mail.  I suspect the EEG was also normal, since the overnight ones I had during sleep studies were.  Dizziness has gone for the most part.  I don't see the ARNP until the end of Oct, so I'll bet it will just be one of those weird mysteries.

Nov 2009:  As I strongly suspected, both the EEG and Holter were as normal as can be.  No explanation for the month of lightheadedness.  No need for a new brain MRI, since prior one was clean.  I'm supposed to go back next year for routine follow-up of my transverse myelitis and sleep apnea.  Come back sooner if something dramatic happens.  As far as he's concerned, I haven't shown dissemination in time.  If I don't get the dizzies again, I'll just be grateful the TM didn't hurt me any more than it did, and consider myself recovered!

April 2010:  Had a week or so of increased urge incontinence problems.  Didn't quite make it a few times.

May 2010:  Middle of the month--my left eye started hurting.  Really more like my left eye socket.  The pain is not much, almost like I've been winking really hard for a long time and the muscles are tired.  Finally went to the neuro-opth after Memorial Day and he said I had conjunctivitis.  He gave me a prescription for drops and later in the week said it was all better.  But it still hurts, just a little less than before.  Sigh..chalk it up to something to mention when I go back to the neuro in November, I guess.

July 2010:  Another bought of slight urge incontinence.

July 2010:  The eye pain has come back for a day or two a few times,  Contemplating calling the neuro-opth.  If you press on the left eyeball, there is pain in the back of it.

Sep 2010:  Had both eyes sore, maybe conjunctivitis.  I washed them out several times a day and felt better.  But, the left stayed achey for a couple of days.  Also developing a burning lower back pain over a period of a week.  By October 1, it has spread from the sides to completely across the lower back.  Feels like someone has been pulling on my skin.  This lasted a couple of weeks.

Oct 2010:  I've started being very sleepy again.  Falling asleep at work again.
Bought a new CPAP (APAP) machine with data recording capability, and I'm tracking the hypopneas, started around 10/13.

Oct 2010:  Had it with the eye pain and went to the optometrist.  Absolutely nothing visible wrong.  Talked about all the things it isn't.  Decided to mention it to neuro next month when I see him and take ibuprofin for the pain.

Nov 2010:  Eye pain was bad most of October.  Has diminished a bit during my vacation week early Nov, but still there.  If I place the heel of my palm on my left eye, everything under my palm is slightly tender to touch, including the whole left side of my forehead.  I'm very sensitive to light, and I've taken to wearing a visor at work.  The sleepiness lasted a few weeks, but I think I'm over it.  My new CPAP machine indicates my apnea/hypopnea index is reasonable.

Nov 11 2010:  I had the worst ever stabbing pains in the ball of my right foot.  3 or 4 zaps in a row, bad enough to make me cry out.  It happened a few times that day, then no more. (so far.)  My neuro appt scheduled for this week has been postponed to January 2011.

Nov 23, 2010:  A week ago, I had awful left buttock pain which became left outer leg pain that hung around for about 4 days.  Eye thing has settled down a bit, but glare at work makes it worse.

Dec 2010:  I've had an earache for several weeks that sort of feels like a sore throat, too.  No sign of any sort of infection.  I started taking Aleve yesterday, thinking maybe it's my TMJ problem acting up.  It seems to help both the ear and the eye, so we'll see what happens.

Dec 2010:  One time had a teensy bit of fecal incontinence.  Just a stain on the Poise pad I wear every day, anyway.

Jan 2011:  The ear thing did go away.  The eye still hurts.

Jan 2011:  Had my annual appointment with the MS nurse practitioner.  Got new MRIs of brain and c-spine and had a VEP done on both eyes.  Follow-up appointment mid month says everything is exactly as it has been in the past.  I still have one tiny brain lesion and 3 spinal ones (one of the spinals had been hiding in the last couple of scans, but they got a good shot of it again this last time.)  We discussed my slightly worse problems and decided they were just nuisances, and the only reason I had brought them up was because I needed to get it on record.  So, go back in a year again.  

Meanshile, we discussed the eye problem, and since it's not something that shows up in a VEP or brain MRI, I'm going to go to a different neuro-ophthalmologist.  I have made an appointment for March.  I just don't think the previous person paid enough attention to the neurological connection to my eye troubles, and since it's been hurting for nearly a year, it's time to get a second opinion.  Besides, this doctor is much closer to my home.

Feb 2011:  For the first time ever--lost it all with my latchkey syndrome urge incontinence.

Mar 2011:  My 2nd neuro-opth is a keeper.  I had 2 hrs of tests and chats and left with a dx of trigeminal neuralgia and a prescription for Trileptal.  She did OCT on both eyes as a baseline, and makes it sound like she'll do one annually.  I don't know if the TN dx will display dissemination in time.  She said "but there isn't a lesion to explain it."  My thought is, well, not one we can see, anyway.  I hope the medicine helps the pain.  One dose hasn't.

Mar 2011:  Had another lost-it-all accident.

April 2011:  Tried 2 weeks at 300MG per day.  Helps a little, not enough.  Upped it to 600MG/day.  Helps more, knocks me out.  Chose to go back to hurting a little and keeping my job.

August 2011:  A very thorough caring doctor, was the urogynecologist.  My urodynamic testing was good--not retaining urine, don't have a floppy bladder, no stress incontinence problems.  My physical exam with her today was also normal--nothing prolapsed, equal sensation on both side of my body, OK pelvic muscle strength, but could be improved.

The whole problem is the bladder contracting inappropriately.  She convinced me I should try one of the medications for overactive bladder, and spent a bunch of time addressing the bowel issues, too, which are making the urinary incontinence problems worse.  She did say that I have taught my bladder to get rid of urine by pushing it out instead of just letting it contract by itself.  And all the straining with the bowel has contributed.

Going to try starting over with fiber and no laxatives and see if I can do that better.  She said instead of psyllium like Metamucil to try a different type of fiber like Citrucel that doesn't cause gas.  She and her nurse kept asking if my husband was with me, and I finally figured out they wanted to involve him, so I dragged him in for the post-exam discussion.  I kidded him on the way home that he had just received a free gastrointestinal consult, because he has been having some bowel/fiber issues himself.  He read all the handouts she gave me.

She wants me to do kegels and I don't think she understood that I'm doing at least 40 at one shot every day.  I'll just up it to 3 times a day, when all she's asking for is 10 three times a day and building up endurance to 5 seconds or more.  (I already do 10 seconds.)  She also wants me to work on bladder training with timed voiding and learning to overcome the urge when it's not the right time.  Don't run to the bathroom when the bladder contractions start--all you're doing is shaking your bladder while it's contracting.  Sit or stand still, do some kegels and deep relaxing breathing, and the urge will pass in 15-20 seconds.

Got the prescription for the oxybutynin chloride filled and some citrucel bought, so tomorrow begins all the new regimens.

She is convinced my troubles are due to my neurological troubles, and seemed to be dancing around a "why aren't you on DMDs" sort of question.  I explained all the normal tests that I've had and no new lesions.  Maybe I will ask her to send something to my neuro.  I go back to her in 6 weeks.

September 2011:  Timed voiding is not going well.  I either forget it's time, or look at my watch and see how long the wait is and am hit with a sudden urge.  I had another major accident over Labor Day weekend.

September 2011:  Eye pain has gotten bad enough to go back on the trileptal.  Had my first at-work accident (minor, thank heavens) late in the month.  Bought the larger Poise pads and a spare pair of jeans to keep in my backpack.  I've been having a few of the stabby pains in both feet over the last couple of weeks.

October 2011:  The bladder meds seem to be helping.  I'm not sure I want to pay for them, though.  If it keeps working, it will be worth it.

October 2011:  The eye pain is getting worse, even with the medication.  I called the neuro-ophth to see if I could get an appt next week, but since my availability and hers don't mesh, I will go during Thanksgiving week.  Her message to me was "At this time you're taking the only thing I can give you to help, and since it isn't severe or an emergency, make an appointment."  And the answer to my question about seeing someone else in the large ophthalmology practice was no.  She's the only one who can help me with TN eye troubles.  Suits me.

November 2011: Ugh.  I went to an oral surgeon on Nov 8 and had my disastrous tooth extracted.  He had me take amoxicillin for a week.  Mid-week, it began affecting me, but I finished it off, anyway.  I've had the Big D many times in my life, and have always been able to keep it in, but this was more like just very loose instead of liquid and it was sneaking out of me when I thought I just had gas.  I've been wearing the industrial-strength Poise pads and taking probiotics.  This lasted over two weeks.

December 2011:  Went back to neuro-ophth about the eye pain.  She doubled the trileptal.  It didn't make any difference, so I have tapered off of it and will try Lyrica if insurance approves.

January 2012:  Meanwhile, I have requested records from the urogyno for my upcoming MS nurse practitioner appointment.  I was very disappointed to see in the written report that what she described to me as a "slight weakness in the back wall" of the vagina is actually a grade 2 rectocele.  Seems that my several years of straining because of my crummy nervous system have blown a hernia between the rectum and vagina.  In her report she lists her impression that I have both a neurogenic bladder and neurogenic bowel.  So now I have covered both of the other specialists that have been recommended by the neuro.  I'm anxious to see what he does with the information.

January 2012:  Annual appointment:  Nothing obvious on exam.  Doc who used to administer MSFC has left, so the ARNP just did the 25-foot walk test, and that's fine.  Had him look at my old MRIs because of the contrast controversy between Jan and Apr 08 spinal MRIs.  He didn't say much about it and gave the CD back.  Because of worsening bowel/bladder and the TN, we're repeating SSER, brain and c-spine MRI w/wo contrast, and my first MRA to see if a blood vessel is pressing the trigeminal nerve.  Follow-up appointment next month for results.

Feb 2012:  Ack!  I have a brain aneurysm!  The MRA of the circle of Willis shows a 5 mm one, so the neurologist wants me to see a neurosurgeon to evaluate it.

Otherwise, here is what he had to tell me:  No changes in my MRIs, normal SSER, no explanation for my worsening bowel and bladder problems, no particular cause of my left eye pain.  However, he did say my left pupil is a little larger than the right, and when he looked in my eyes, he thought my right eye showed a little something (he didn't use the word pallor) that made him ask about the vision in my right.  I have a small scotoma in the right.

So, no blood vessel or lesion cause of the left side TN.  No new brain or cervical lesions on MRI.  No thoracic lesions revealed by the SSER.  Really no answers, just new questions about the aneurysm.  Now I wait for the doc he recommended at the research hospital to call for an appointment.

March 2012:  Had the appointment with the neurosurgeon, who ordered a cerebral angiogram.  According to the interventional neuroradiologist's report, the annie is 8mm instead of 5, and it is on my carotid at the place where the ophthalmic branches off, in such a way that the ophthalmic originates from the annie.  It cannot be coiled.

May 2012  I had a good appointment with the neurosurgeon today.  He says that even though the annie is larger than we thought at 8mm, it’s still officially small and not likely to rupture (less than .5% per year).  He wants me to have a CT angiogram in a year to make sure it’s not growing.  That’s just a CAT scan with dye—nothing invasive like the full-blown angiogram I had in April.

He says it is located within the cavernous sinus, which means it is protected by bone.  That makes it less likely to rupture, but also more difficult to repair through open surgery, since you have to actually remove the bone to get at it.

Because the ophthalmic artery is at the base of it, it can’t be coiled in an endovascular procedure.  My neuro-opthalmalogist was of the opinion that it couldn’t be clipped without killing the eye, but the surgeon says it is possible, just a 5% chance of that happening.  BUT, there is a new procedure that was recently approved for carotid and basilar annies that will likely be approved in the next few years for the ophthalmic ones.  It’s called the pipeline embolization device.  I’ve only read a very little bit about it so far.  If we decide to treat it once that is available, it is one of those endovascular procedures—through the arteries, not the skull and brain, so that is good news.

Both he and the ophth are certain the annie has nothing to do with my eye pain, so I’ll still need to try to find a medicine that will work on it, or some other cause or treatment.  Since the annie isn’t involved, that is further reason not to treat it.

The surgeon asked me more about my eye pain, and we talked about the meds I had tried.  He wondered if my MS neuro was treating me for that that, and I told him it was the neuro-ophth.  He is going to request her records.  That opened up a conversation about probably switching neuros, and the med school where he teaches has an MS specialist that I think I will try to switch to.  I've been going out of network for the last two years and spending thousands of dollars for MRIs and appointments that don't lead anywhere--except that the wonderful nurse practitioner who ordered the MRA discovered my aneurysm.  If I'm going to spend thousands on annual CT angiograms, I may as well get in with a neuro who is in network and get me some freebies.  And maybe better answers.

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by Udkas, Nov 10, 2011
Hi Hbananas,
Thanks for sharing your journal, It is interesting to read someone elses thoughts on their diagnosis etc.  and how it all evolves and changes.  I am so glad that you are stable.  I am likewise.


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