Misery and Mirth

Neurologist Visit & My Crazy Brain

Monday I saw my neurologist, Dr.Begum to discuss the results of my MRI brain scan and have a recheck. I was quite shocked at what she revealed to me. She showed a few small spots on my scans that were most likley indicative of minor past brain bleeds but also these spots could not be differentiated from those that appear on the brains of people with Multiple sclerosis(MS) so I will have a follow up scan in a year or sooner if i begin to have serious muscle weakenss or paralysis.

Then she showed me how my parotid glands (which are the major salivary glands located within the head on both sides near the ear) appear to be inflammed and full of cysts. This is often seen in people with Sjogens syndrome so i will be sent to an otorhinolaryngologist for a biopsy to test for this. Sjogren’s syndrome is an autoimmune disorder which results in immunologically-mediated destruction and inflammatory enlargement of salivary glands, tear glands, sweat glands, mammary glands and many glands of the digestive system, pretty much any gland that secretes lubricating fluid.

Then she showed me a diagram on her wall of the brain ventricals and compared them that to my scans that showed my brain ventricals had “shrunken”. The ventricals are cavities in the brain that contain a clear, colourless fluid called cerebrospinal fluid which acts as a buffer against damage. But because my ventrical had shrunk and my body is still producing the average amount of cerebrospinal fluid this is creating pressure within my brain and spine. This phemonenon is called Psuedotumor Cerebri. Which explains my migraines, back aches and some of the neurological problems (dizziness, visual disturbances, memory loss, balance etc.) The only way to test how high the pressure is, is by doing a spinal tap- inserting a needle in to the spine attached to a pressure gauge mechanism. Dr. Begum didn’t want to subject me to that YET, so she is sending me to an opthamologist to test my vision field first. Because the excess pressure can damage the optic nerve 1st causing a decrease is the peripheral vision. She said if theres no damange the pressure isn’t bad enough to warrant a spinal tap, but if there is a decrease in vision they will have to do it.

Next she re-tested my nerve sensitivity and noted that I still had reduced sensitiivty in my lower limbs, I don’t know if this could be associated with the Pseudotumor Cerebri or possibly MS. She wouldn’t say one way or the other probably because she doesn’t want to scare me. She has ordered me to have an EMG. Electromyography is a test that assesses the health of the muscles and the nerves controlling the muscles. She did not perform the test on me Monday becasue I have swelled up so bad with edema(water retention) that she said she would not be able to get an accurate result. I have been swelling up like a baloon for a month no. It started the week I was reduced to 5 mg of prednisone and has gotten worse since then. So Dr, Begum put me on a diuretic pill to flush out this water, which is possibly lovley after effect of taking the Prednisone.

She also told me my upper legs where way too big and out of proportion to the rest of me, which she says is a sign I am having lymphatic pooling. Which means not only is water pooling in my body, but lymph fluid is not flowing and cycling properly and pooling in my lower body. So she said she may be sending me to have some kind of therapy that involves placing a device on my thighs that squeezes and relaxes to encourage flow.

Tuesday I treid to set up the appointments with the 2 new specilists that Dr.begum referred me to but neither takes my insurance, so i went through the phone booke trying to find ones that did with no luck, then i called back Dr. Begum, her receptionsit told me to call my insurance. I was told someone who could answer my questions would call me back abotu an hour later they called me back but refused to give me names of any doctors or know any other answer to questions I asked about coverage of IV blood disorder treatments, mental health coverage. So I called Neurologist office back again told them sorry I would liked to take care of it myself but they will not release names of participating doctors to me and said you must request them. I left for Rob’s a few hours later so I am not sure if they called back and left a message with names of doctors for me. 

Today Thursday I have been on the diuretic for few days my feet and legs are still swelling up nasty but I can actually feel a decrease in the pressure in my head. My head doesn’t feel like its trying to explode and the constant throbbing back ache is nearly gone.  In a few hours I will be heading out on my road trip to Toronto, Canada. So before I head out of country I will call home and see if Neurologist office called and if Hematologist office called with Mondays blood results, see if my platelets are holding.  I hope I have a blast in Toronto.

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