hi there, so the past 7 months have been torture. pd is in my family, dad has essential tremors but they didnt hinder the amount of disability i have been in starting back in 2012, and then popping up again and not going away since july 2014.

it all started with a ruptured ovarian cyst that got me sick for 10 days but i have a high tolerance for pain as i grew up and worked in classical arts and there you are taught never to complain about anything ha ha. so eventually i go to the ER they find some free fluid, the ruptured cyst, acute uti with cystitis, i get a pelvic infection and couldn't leave my bed for almost 2 months. the bf was a god send taking care of me.

i got sent to a gyn oncologist by the er, he said wait out about 6 weeks and i should start to get better. as soon as i started to get better, i wake up in scorching pain at 6 am one day barely able to breath or move, my friend from finland was visiting sleeping in the same room and i was looking like i was about to die and obv feeling like it too, i barely made it to the bathroom gasping for air and then ****** out blood. i have no idea to this day why that happened and none of my doctors seem to have an explanation other than i might have been dehydrated thus possible kidney stone. gyn onc didn't really go about the office visit well after telling me to come in to save me another ER trip.

I get referred by bff's mom to her gyn, very well sought after in the area with long term patients. he wasn't supposed to see me as i am 24 and typically doesn't take patients under 35 but did due to my circumstances. they found a hemorrhaging cyst on the other side this time, and referred me to a surgeon for a much suspected inguinal hernia.

i get to the surgeon long story short had bilateral inguinal hernias, they were repaired laparoscopically at the end of june. they told me the first month is typically when you have the worst pain, after that recovery gets much better, faster, and moving around is easier. while my low back pain ceased immediately after the surgery, the months went by and i was not better. my legs were shaking up stairs, my stomach began to feel within the past month or so like i reherniated myself, i got tremors mainly in the R hand, but then spread to the left arm and both sides are and legs as well as my head and neck ( head and neck usually only when im super stressed or emotional or tired or missing meds etc).

in 2012 i was dx w/ bilateral ulnar nerve entrapments on both elbows, loose ligaments, a tfcc tear on the right wrist, mild carpal tunnel, bilateral cubital tunnel. i had ulnar nerve entrapment release surgery on the right side with suspected focal dystonia. i couldn't use my right arm for three months before i had the surgery. i had tremors before surgery, and after i would get them occasionally if i had played my instrument too much, or overused my arms. i also couldn't button anything before surgery, and immediately after i could button things it was like magic.

but starting in late march when i initially got sick and misdiagnosed with PID, after 11 ultrasounds, bilateral unexpected hernia surgery, getting put on birth control to shrink the cysts and prevent another painful rupture, the following specialists:
2 gyns,
gyn oncologist,
internal med pcp,
gen. surgeon,
hand specialist/surgeon,
old neurologist,
current neurologist/mds,
rheumatologist,
current neurologist/mds's senior who only specializes in mds,
ongoing shrink,

the following tests since end of july:
-new eeg
=myoclonic* new, uber light sensitive per usual im epileptic,
-new mri w. w/o contrast
=all normal
-new emg and nerve conduction studies bilateral on arms and up to neck,
= previous ulnar nerve surgery didn't do anything (obviously bc i cant button crap or do normal things more so on the R but also on L on bad days too)
= everything abnormal out of range for everything bilaterally
-blood tests to check medication levels
= all in normal ranges,
-10 vials drawn at rheum.'s + xrays
= Vit D2 (mine was 18) & B12 deficient
-now on 50,000 IU D2 rx per week,
-1000 mcg/day B12,
=mild osteopenia in hands,
=confirmed tremors in upper extremities and knees
-trial of primidone for initial dx of essential tremors
= didnt work increasingly more depressed as the days went on
-decreased adhd med
= no difference in tremors they got worse
-senior mds impromptu comes into apt bc neuro wanted me to see him and get his opinion,
=finds cogwheel both arms,
=dystonias,
=confirmed ET in arms and legs
= stop the primidone,
=have me get a 24 hr urine collection for copper
=ceruloplasmin blood test to rule out wilson's disease,
=started a trial of carbidopa-levodopa this past wednesday.

for the first time in months i have been able to move around a little more easily and the nausea is ceasing. I have a DatScan first week of October, neuro explained to me that CLpa is used to treat symptoms of PD even if it isn't necessarily PD itself.

I still don't have a clear cut diagnosis. but the CLdpa is working in reducing symptoms, D2 & B12 supplements, walking, friends, and reiki are starting to help.

Has this long grueling testing process happened to anyone else? does anyone have any insight? I currently live alone and I am combating some previous psych. issues-my social support is getting stronger, but there are so many people my age that don't really understand flaking out on me is not ok because their help with chopping up food so i can eat is how i can eat and if they cant be honest and tell me they cant show up i suffer and i suffer a loooooooot. anyone with some insight please help.

i just want to have some sort of response if they put me on this hefty med because i may have PD- my symptoms have crippled me off of it and even on it they are not completely gone. I am significantly more happy because i can move and getting out of bed isn't as painful but still-i use radical acceptance everytime pain tries to get the best of me. I never thought this would happen to me, im accepting never producing or playing my instrument again i cannot hold my bow, my doctors know this. thank you in advance i know this is a long and complex post. i am glad you are here and grateful for any response you can lend or advice.