I've been told by 2 g.p.'s and 1 neuro that I don't fit the "MS profile." Also the neuro that dismissed me and all my complaints last year didn't even consider it as a possibility -- ironic thing . . . . saw him on the local news recently talking about an experimental medication they are now using in MS trials. LOL, no, actually not funny.
Anyway, due to rereading a post from Heather on being open to other diagnoses and the post from Ouix on skepticism, I decided to post a summary of my timeline to get some other opinions. The new neuro wants to send me to Mayo, and my insurance won't cover it (HMO). I don't want to be like another poster who left there 15K in the hole with still no answers.
Here goes:
33 y/o female
Summer 1991: insidious onset severe vertigo; unable to stand; severe nausea; lasted ~45 minutes then gradually faded but have had intermittent problems with vertigo since
Summer 2001: insidious onset constipation; went through all the tests with a GI who finally concluded that my intestines just are "lazy and slow"; problems since
May 2002: daughter born
December 2002: onset of body aches, right sided facial pain from ear down along cheek and jaw, low grade fever, vertigo/dizziness, and nasty tonsils; treated with 2 courses of antibiotics then admitted in late December to hospital with diagnosis of mononucleosis. Monospot test was NEGATIVE. Throat culture NEGATIVE. All blood work normal except high EBV IgG titers. Treated with course of steroids and returned to work in 2 weeks.
Late 2003 or early 2004: went to bed fine; woke up with severe, aching pain both sides of my face from my ears along my cheekbones to my nasal bone (2nd branch Trigeminal nerve). No burning or stinging but was a constant ache as though I had been punched in the face. EXTREMEMLY sensitive to touch -- MD suggested ice pack but couldn't stand the pressure. Also with facial pain, had SEVERE fatigue and generalized weakness. Unable to walk from room to room without stopping to lie on the floor and rest. G.P. assumed a sinus infection due to facial pain although no sinus congestion and return of the infamous mono. Treated with steroids and antibiotic. Blood tests all fine except high EBV IgG titers. Return to work in a few days.
2004: continued problems with fatigue; would have cycles in which it was severe; would sleep during lunch and fall asleep driving (yes, bad I know), trouble focusing and concentrating. Would have irrational thoughts during cycles such as, if I wreck my car, that would be a good excuse to lie there and rest -- but NEVER felt suicidal, just exhausted. Didn't matter how much sleep I got, would wake up feeling as though I hadn't slept at all. G.P. says I'm depressed and puts me on Lexapro
Early 2005: onset problems with urinary frequency, urgency, and cystitis. Symptoms of UTI despite cultures all being negative. Referred to urologist who looked inside the bladder -- found a localized area of inflammation but no explanation of what was going on. Put me on a low dose antibiotic for 3 months then as needed if symptoms returned
November 2006: son born
March 8, 2007: went to G.P. due to severe fatigue for 3-5 days, generalized weakness and onset severe brain fog. Placed on antiobiotic and steroids due to pharyngitis although had no complaints of throat pain
March 9, 2007 (sometime between 11:30 and 12): onset SEVERE facial pain same as described above. G.P. had called to check on me in morning and then pain came on a few hours later. I called G.P. who assumed that pain was due to onset sinus infection, although I had no sinus congestion, and current meds would cover the problem.
March 15, 2007: continued severe fatigue, weakness, and facial pain. Sinus x-ray negative. Onset of yeast infection. Have have chronic problem since. Been treated more times than I can even remember, including being on Diflucan 1x/wk for 2 months. Problems return within 2-3 weeks after last treatment. I've never had this problem until now.
Resolution of facial pain sometime between March 15 and Easter
Around Easter 2007: full return of severe facial pain 2nd branch Trigeminal nerve as described above. Pain is equal on both sides. Placed on a different antibiotic, thinking that 1st one was ineffective in treating sinus infection
April 23, 2007: saw by ENT. Cleared sinuses as problem and did CT scan to be sure. Recommended neuro consult.
May 4, 2007: seen by osteopath for manual manipulation to determine if problem was structural. Osteopath determined problem was neurological and recommended to proceed with neuro consult. Put me on Valtrex and steroid just in case it was a post-herpetic neuralgia
May 31, 2007: consult with dismissive neuro. Had an abnormal fundal exam ("elevation of the disc with humping of the retinal vessels at the disc margin and prominence of the veins overlying the optic nerve head with prominent pulsations present. The temporal disc margin was distinct but the mesial disc margin is somewhat indistinct") but reported everything else normal. Thinks facial pain due to onset of pseudotumor cerebri
June 4, 2007: faxed letter to neuro stating that I had been having a lot of odd symptoms that I didn't report to him because I assumed they could be related to something else. Given the current situation, I wanted to report: fatigue, nausea (worse when pressure to head and facial symptoms worse), dizziness (worse when pressure to head and facial symptoms worse), sensation back of head as though someone is squeezing and trying to pull the one away (increases when facial symptoms are worse), vision changes (had to start wearing reading glasses after problem in March; never had a problem with vision before), irritability, difficulty with concentration/brain fog, low grade fevers, hot flashes in which I would break out in a sweat then get chills, neck pain at the base of my skull. Related that the things somehow tended to be weather or pressure related, particularly the facial pain was worse when it was cold outside. Horrible with wind on the face, etc.
June 5, 2007: MRI with and w/o contrast on 1.5 Telsa negative for problems
June 14, 2007: Lumbar puncture opening pressure normal. Normal for malignancy, glucose, protein, and blood cells. Nothing else assessed. Dismissive neuro called to say everything normal. Said that 95% all symptoms can be blamed on having mono and the other 5% he didn't know. Discharge of care.
Gradual resolution of symptoms, including visional impairment and facial pain, over time
September 4, 2007: changed to different G.P.; started on Zoloft -- husband sums up as no less tired but less unhappy about it
Mid to end of January 2008: exacerbation of ???????? Onset of severe fatigue; paresthesias including burning, icy-hot sensations, feeling at times like someone is pouring ice water down my legs and the backs of my arms, prickling, aching; muscle spasms in both legs in calves and knee and hip pain that prevents sleep; bladder urgency and frequency; decreased short term memory and focus; word searching when talking; problems concentrating; generalized weakness; increase in fatigue after mental or physical exertion; could (and did) sleep for hours on end but still wake up feeling exhausted; increased paresthesias (particularly burning in thighs) with exertion (particularly when climbing stairs) like I've been exercising too hard for too long; weird shuddering sensations would frequently run through my body like tension building up everywhere as though I'll suddenly go into a total body spasm or seizure