Long day at Hospital Neurology Department

Had no idea it was going to take as long as it did, my appointment was at 1230 for a Electromyogram (EMG) and Nerve Conduction Study  but I didn't get called back till  1pm.  I new something was up when he took the results and stepped back saying the big Dog wanted more, shortly after another Doctor comes and I quickly learn he is the Ultra Sound dude and then a 3rd doctor comes in she was in charge of noting all the findings on some sheet of paper and this being a teaching hospital the Ultra Sound dude was pointing out things and asking her questions as they noted all the issues seen.   Apparently I have a cyst dude was like did you know........um no sorry doc but my X-ray vision is on the fritz.  The took pictures of the cyst measuring getting a profile view and then mentioned some other test to the girl doctor that I am guessing I will be getting later.

I haven't officially be giving a diagnosis yet, still have to wait for the rest of my medical team to review all the tests and imaging.  But from what I gathered Carpal Tendon Syndrome in both hands which wasn't a shock since I was dx at 16 with Carpal tendon due to an injury on the Clock with Wal-Mart (Workers Comp) that is how I made my escape to the sales floor.  There is muscle damage to what extent I don't now on the left arm since he  made a comment it had the worse readings from the nerve test. Some sensory loss, peripheral damage (which I had already guessed) from the chemo.  My legs apparently didn't show any damage to muscle since they didn't due a nerve to muscle test on them.  Every-time I thought I was done the Big Dog wanted even more test on my hand, apparently they were checking my clutching reflex kept buzzing in my palm, and apparently my nerves were not cooperating.  He made a comment that all my doctor's say your unique, apparently it is very hard to let alone find but to shock my nerves...lol

When they finally said I could get dress and go you didn't have to tell me twice in record speed I was dressed and out the door at 5pm.  Great 5 o'clock traffic in the Triangle took an hour from the hospital to 40, with a quick stop to a soda and chips since the radio done told me traffic was at a stand still from exit 274 to 276 and I would be entering freeway at exit 273.   Apparently during this time I missed to calls from UNC, apparently I did get out of the in time...lol... They didn't leave a message so I am not sure which department it was and they didn't leave a message so not sure what to think, but in the past isn't always Rosy when they don't leave a message.

My Rheumatologist told me if I hadn't heard from him with 2 weeks from the time I had the study to give him a call so it could be a while.  This cyst I feel may be a big pain in the ass since a Cyst in my butt muscle has sent me to the ER 3 times, where I was admitted and rolled straight into surgery and filled with antibiotics.   And Basically with that one due to its location there isn't any way to fix it, besides draining it, and antibiotics.

These trips to Raleigh/Chapel Hill has been very unkind to my sinus so it looks like next month I will need to visit an ENT when I have money so I can get antibiotics.  I also got to make an appointment with dermatology to check my skin and issues I have been having and see if there is any other lotions that will help.  Then a call to Walgreen's to see how much money I need from my lotion which I can almost guarantee $100 or more with insurance and coupon so that one will have to wait till payday too.  I should have enough to pick up my Chemo pills.   Ugh still have a lot of medical and disability paperwork to fill out, the problem is remembering to do it and energy and concentration required to finish said paperwork.

Fatigue wise I thought it was pretty much under-control....loll my ass I have basically sleep  the last week away getting up to eat, drink, pee, watch a little TV/Computer and back to sleep.  The multiple appointments last week played a little into it but it was already building.  My body basically fells worse than it has ever all the muscles feel strained and beaten ache like I just ran the Boston Marathon, my joints inflamed and throbbing, veins bulging on my left temple, sharp pain behind the left eye, pain behind the ear, sinus draining down back of  my throat, strange numb feeling in cheek sinus cavity, along with the nose that loves to bleed, whole body weakness, muscles feeling like the are burning just like the eyes.  And if that wasn't enough the hoarseness and burning sensation of the throat (different burning than that felt my acid reflux which I take nexium for)  All these things means no sleep for me, even if I manage to turn off or tone down my imagination and brain laying in bed, even relaxing the body the aching, burning and pain leads to some rest but no sleep past REM.  I have realized that no matter what time I  have an appointment the next day I can never seem to sleep.

I will definitely have to start a calendar and have family/friends go with me to , I would write more but my eyes have said no as they are starting to blur, white screens and light not good for em.

Good Article About Sjogren's

http://www.nytimes.com/2011/09/02/sports/tennis/for-those-with-sjogrens-syndrome-there-are-no-easy-answers.html?_r=0

A few excerpts from article:

"It often starts out as an uncomfortable feeling in the eyes and mouth. Patients say their eyes are dry and red, even though they are using eye drops. Often too, they say, their mouths are dry. Food is becoming tasteless. Some get swollen glands in their necks, making it look like they have mumps."

"It turns out those are the hallmark clinical signs of Sjogren’s syndrome, a mysterious disease caused by an overproduction of B lymphocytes, the cells of the immune system that make antibodies. The deluge of B cells clogs glands. Some people have trouble perspiring because their sweat glands are obstructed. Or they have trouble digesting food. Women may have pain during intercourse because their vaginas become dry."

"When Venus Williams said the disease made her feel tired, she was right. Patients with Sjogren’s, like those with the related diseases rheumatoid arthritis and lupus, are unusually tired, and there is no way to alleviate this sensation. Investigators have studied lupus patients, asking how much oxygen they consume when they exercise, and found that they use much more than healthy people, although no one knows why that is so."

Forever Flaring

It is quite frustrating getting a good groove on, sleeping on a schedule for most part keeping flares/pains/aggravations under control and then BAM….Something derails the train.  

For a while I was sleeping to till 7am to 5pm then it move back a little then I had to adjust my sleeping time in order to attend family events.   That is when the train ran off the tracks, periodically I had gotten the groggy throat sjogren’s attacking my throat and voice box, but not to this level.  I ended up sleeping for 48 hours waking up for short time to eat and drink and then back to sleep trying to get back on a schedule. 

Throughout this time I was also have issues with my eyes, burning, blurry vision, that has prevented from doing some of my favorite pastimes, writing and reading.  Finally got back to see the eye doctor I saw first and he wasn’t too happy about the job one of the residents did with my eye plugs. 

In 2012 I had the plugs put in and the resident had problems placing the plug in my left eye and ended up cutting the plug down some.  As I told the Eye Doc this he had a skeptical look on his face until he looked in my eyes, low and behold the right plug was missing in action and the left was half way in and half way out, and it had been cut down in an attempt to fit.  What are eye plugs???

Main article: Punctal plug

Punctal plugs are inserted into the puncta to block tear drainage.^[7] For people who have not found dry eye relief with drugs, punctal plugs may help.^[7] They are reserved for people with moderate or severe dry eye when other medical treatment has not been adequate.^[7]

The girls also did a test called :  Schirmer's test measures the production of tears: a strip of filter paper is held inside the lower eyelid for five minutes, and its wetness is then measured with a ruler. Producing less than five millilitres of liquid is usually indicative of Sjögren's syndrome. This measurement analysis vary among patients depending on other eye related conditions and medications that they are on when the test is taken.^[19]  And guess the result for Heidi that will be I had absolutely NO TEARS, bone dry baby.

So what to do well apparently a q-tip and a hot rod…………and a process called Cauterization.  So what is this you speak of well a little goggle search and on wiki:  “If punctal plugs are effective, thermal^[8] or electric^[1] cauterization of puncti can be performed. In thermal cauterization, a local anesthetic is used, and then a hot wire is applied.^[8] This shrinks the drainage area tissues and causes scarring, which closes the tear duct.^[8]”    So lidocaine, needles then a burning sensation, didn’t feel the needle in the eye but damn sure felt the burning.

This process helped for a few days but as I figured it is simple impossible to keep my eyes from being dry, 4 to 6 preservative free drips a day in my eyes and use a thicker gel for night time gives little relief.  Thank-fully my next appointment is set for May where they will either put plugs or cauterize my upper tear ducts. 

Like my eyes being dry so is my mouth which leads to thrush, sores, burning tongue and trying to find toothpaste that doesn't cause pain has become a task.  Frustrating when u literally do a fidgeting dance trying to brush your teeth as your mouth is burning, using a paper towel to try and dab your tongue in hopes of stemming the pain/irritation.  Then spend the next 2 hours waiting for the swelling and burning of your mouth to stop.

Next up is to test my nerves to see what damage may have been done from chemo, and if the Sjogren’s is now affecting the nervous system.   Hopefully this will provide some information and explain some of the pain, numbness and other issues that has been plaguing me on and off since my adventure began in 2008.

Hydro Network: My hobby escape from Medical Land

http://heidyplayscalediorama.blogspot.com/2014/04/picture-day.html