History of Elizabeth's Condition, Current Condition and Medications

Written by Elizabeth on October 13, 2008

My condition:

Currently, I am bed-ridden 90% of the time and in absolutely terrible shape. My overall suffering level (including pain, nausea, weakness, overall nasty feeling) is a 9/10 lately - so bad I can't stand to be awake/alive. I can bring it down to a 6 or 7/10 about 10-20% of the time, like now, after tons of sleep and careful control of little food bits and medications. I have a hard time getting any medications in, so any therapy I go on would need to start gently, and I have a very hard time travelling in the car so that is an issue as well.


History of my symptoms and their cause:

I have been diagnosed with Neurosarcoidosis. In addition to the the granulomas that have formed in my brain, multiple organs have been effected by the sarcoidosis - liver, spleen, lungs, pituitary, bone, skin, lacrimal and perotid and other glands, lymph nodes, etc.

These symptoms started 2 years ago and improved on a high dose steroid regimen which I was put on for about three months in 2007. I was getting better on the prednisone (steroid) treatment, but about 2 months in I crashed really hard with sickness that had related, but different, symptoms to what had been the most problematic. We now know that this was my nervous system sarcoidosis starting to proliferate. After much unceasing illness and no answers, I finally saw a doctor who could account for all my symptoms as being directly or indirectly related to my neurosarcoidosis. (I had to go outside of Johns Hopkins to find the expertise because the neurological part of the disease I am experiencing is so rare.)

Essentially, the small fibers of my nervous system are having an acute attack (neuropathy). Some of the small fibers being attacked are: my cardiac autonomic nerves (leaves me very dizzy and having vertigo constantly), my stomach autonomic nerves (leaves me with constant terrible nausea and vomiting), my bladder autonomic nerves, and all other related autonomic nerves (paralysis and dysfunction of all the unconscious nerves) – this leaves me with severe pain and severe loss of sensation throughout most of body. I have multiple cranial nerves involved as well – which cause everything from difficulties swallowing and breathing to loss of smell.

The manifestations of the disease are very atypical from what you usually see in a neurologic disease. For instance, I have about 6 cranial nerves involved in patchy areas (normally, a single nerve is effected entirely). Additionally, my small fiber neuropathy (which is most commonly seen in diabetics) also follows an unknown, patchy course. The small fiber neuropathy is particularly worrisome because it can often eventually lead to complete dysfunction of the autonomic nervous system – the autonomic nervous system effects, among other things, heart rate, digestion, and respiration rate).

Current medications:

I take a number of pain medications, but wanted to highlight the drugs that are being used to treat the Neurosarcroidosis.
• I am on 40 mg./day of prednisone currently.
• I will start a drug called CellCept (500mg/twice a day) in a few days. This dosage will increase to 1000mg/twice a day if I tolerate the smaller dosage. I will also begin using Remicade in week 0, week 2, and week 6 (we don’t know the dosage at this point.)
o The CellCept will take about 6 months to start working, and if I tolerate it and it works, some of my nerves may start growing back. The best case scenario is that many of them grow back slowly and I gain a lot of function back. (I would then have to consider the effects of staying on these drugs long term. If I have to stay on them for life I see alternative medicine as a way to help minimize the toxic effects they might have). The worst case scenario is that the drug doesn't work and I progress in the disease.
o The Remicaide will, if tolerated and if it works, make the medicine work faster - which I need right now because of the multiple life threatening complications that will continue and get worse if progress is not stopped.
o I want to note that these two immunosuppressants are chosen based on 6 patients (with similar symptoms) that my two doctors have worked with. I am doing tons of research to look into what other medications may have worked for others....in case these two drugs do not work. I know there is a good chance they won't and want to be prepared.