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503893 tn?1292103433
Nobody can figure out what is going on
Hello Everyone!
If anybody has similar symptoms to mine and has gotten a diagnosis please respond.  I'm tired of going to doctors and being looked at like I am crazy (this has been confirmed NOT to be the case by my psychiatrist of 7 years !)
The short story is:
47 yo female
current meds:
neurontin - 1100mg/day - for panic disorder
allegra - 180mg/day; singular 10mg/day; flovent 220mcg/day (all for allergies/asthma)
asperin - 325mg/day - blood thinner

03.2005 - spinal fusion - L4-5
04.2007 - spinal fusion - C4-6
07.2007 - stroke (small cortical focus of abnormal diffusion and T2 signal in the left inferolateral frontal lobe, measuring ~ 7mm in greated dimension, suspicious of small focue of subacute ischema
07.2007 - diagnosed with a small PFO
02.2008 - hysterctomy
04.2008 - veritgo (room spun half way around - from the right to the left when I moved my head to quickly orlaid down/got up - and repeated this pattern. Antivert did not relieve sumptoms.  Symptoms faded away within 3 weeks.
and now my life starts to go downhill completely.
My circadian clock has shifted - now I absolutely cannot fall asleep before midnight (prior bedtime was 10 pm)
I am constantly fatigued and have become a 'bumbling idiot"  I forget people's names that I have known for years; I transpose words in my sentances; I bump into things all the time (balance issue?); it's hard to explain, but if I put my purse (or anything else) on the ground near where I am seated I will get up and trip over it - I know things are there on the floor but somehow it doens't completely register in my brain; my typing is horrible (yes - I double and triple-checked this post for errors); I put my underwear and wrist watch on inside out or backwards; have trouble focusing on tasks at hand; Even small tasks such as gathering everyhting I need to go to work in the morning and putting it all in one spot doesn't seem to work - it will take me at least three trips to the car because I 'forgot' something; I have started to carry a small notebook around with me so that I can jot down what it is that I am supposed to be doing; the list can go on endlessly.
Pain:  I am in some type of pain constantly - I wake up with pain and I go to bed with pain.  Pain in my spine, right hip, right elbow is predominant.  Will get headaches most days but I think it is from muscle tension re: c4-6 fusion;  It seems that once I injure an area, the pain just never goes away - it will subside but then will re-appear.

Cymbalta:  I got tired of the docs telling me all of my symptoms are due to depression - I have had transient depression in the past due to life situations but am not chronically depressed.  Plus the cymbalta made me want to smoke more.  With my pysch's permission, I got off of the cymbalta (with the usual withdrawal effects) and the pain EXPLODED in my spine - I needed to take my percocet around the clock for at least two weeks.
Nortyptyline: I am now back on this drug as a smoking cessation aid (13 days without lighting up!).  It has helped the pain marginally.
05.2008 - new brain mri states 1) nonspeicif T1 hyperintense/T2 hypointense signal within the left basal ganglia, mostly putamen, and left caudate nucleus.  Similar findgs are not definitively characterized on the right.  This may represent sequelae from early calcification.  Other etiology such as somewhat atypical appearance on inflammatory or infections etiology or even hepatic encephalopathy cannot be entirely excluded.  2) Mild nonspecific white matter changes which are possibly related to chronic small vessel ischemic disease.
06.2008 - mri - brain - confirms the findings of 05.2008 and notes that the pituitary gland is sligthly enlarged.
07.2008 - sleep study - Epworth Sleepiness score - 9; Sleep efficiency was normal at 90%; sleep architecture: revealed predominant stage 1 and 2 sleep  There was noted to be relative increase in the amt of REM sleep but a delay in the REM latency which may be secondary to drug effect. Arousal Index: minimal at 10.9; Periodic Limb Movement was elevated @34; periodic leg movement was 2.8; respiratory data:  apnea/hyopnea indenx is 0.
Multiple Sleep Latency test: was performed per lab protocol, 4 naps were obtained.  The patient exhibited a mean sleep latency of 3.1 minutes in the first 4 naps, the patient did not echibit any speel onset REM periods.
Impression: Abnormal multiple sleep latency test consistent with a severe degree of daytime somnolence.
08/2008 - I tried to take 1/2 tablet of Provigil and I went into a panic episode, complete with agoraphobia - I havent been able to work since ~ 8/15/2008.

The local Rheumatologist wrote me off (I got the sense he was not interested in possible fibromyalgia link when he told me he treats rheumatic arthritis and asked my why I was there) - did some bloodwork - confirmed nothing out of the oridnary (ANA+RA Qn; Lyme ab/western blot reflex; CCP IgG antibodies; sedimentation rate - westergren; creatine kinase, total serum)

The endo did two pulls of blood - (Thyroid panel; FSH and LY; Thyroxine (T4) free; direct,S; estradiol, TSH) Thyroid panel was ok.  LH was 4.4 and FSH was 3.1; estrodiol was 8; all other tests wer normal.
The second pull showed that my FSH, LH and estradiol was normal (9.2; 13.2, and 30 respectively - so the endo has written me off).

My new neurologist is currently reviewing all of my paperwork and will be seeing him for a follow-up visit next week.  In the meantime - I've switched my diet to vegan (mostly organic); quit smoking; work out 5 times a week (need 5mg/325mg of percocet in order to complete the workout and I limit the workout to what my body can handle that day).

If anybody has  had a similar situation and has gotten a diagnosis - could you please share it with me?

It seems to me that something happened in April beginning with the bout of vertigo that started this downward slide.  I've had two neurologists (one local one at U-Penn) swear that I have not have any NEW strokes.  All mri's were done one the same 3.0 tesla MRI at my local hospital. Nobody as of yet can explain my symptoms however I am not well enough to drive the 80-mile each way commute to work and and not "together" enough to complete the tasks required of me for my job (I set up and validate data in a huge pharmacueitlac data warehouse that is very complex - I used to be able to do my tasks with my yeys closed but now I had hardly remember the tasks at all).
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Avatar universal
Congrats on quitting smoking.  Keep up the good work.  lease forgive any typos.  Even though I triple check, I can't always find the error due to visual agnosia caused by repeated strokes.  This is why I responded to your post.  Don't give up on getting a diagnosis, you don't want o have any more strokes  My symptoms are very similar to a lot of yours, and several physicians believed that it was "all in my head" too.  Turns out t is, and in my case it is called Primary Angiitis of the Central Nervous System.  This is a very rare condition (I don't seem to be able to find out how rare), and doctors seldom search for the zebra when there is a horse to be found. I was lucky to find someone who listened and believed in me. Good luck
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503893 tn?1292103433
Thanks, Snuffle, for taking the time to answer my plea for help - I will try and do some research on this condition and make sure I ask my neurologist about it - thanks again
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