May 02, 2011
This is my journey of my ongoing medical issues. I have always been an on the go kind of person, loved smiling and laughing and being around others. I was a social butterfly. I used to go see my regular doc, once a year for a check up and never had a complaint.
When I was 17, I had come down with cat scratch fever. Never even heard of it except for the song. I had to undergo surgery to remove the lymph node behind my left ear.
Fast forward to around 22 yrs old. I was working at a day treatment facility for the mentally and physically challenged individuals. I was reading a story to them aloud and suddenly my speech started to sound slurred and I felt as though it was a weak tongue, I called it my “Lazy Tongue”. This didn’t last too long and I let it go. I did not go to see a doc. because I was young and had no idea that it could have been serious.
Around 3 yrs later, it happened again.
I was talking on the phone with my sister and started to slur my words, my mouth muscles felt tight and I couldn’t get my words to sound right, I sounded drunk. Once again, it didn’t last long and I let it go again.
Around the same year, I had some neck stiffness that appeared while at a meeting at work. I was very stressed at the meeting and my neck started to hurt instantly. This lasted up to a month. Never knew what happened, just stiff neck and couldn’t work.
I was approx. 28 yrs. old when I had my legs go “dead”. I was just getting into bed and ready to roll over to go to sleep, but my legs didn’t want to move. I could feel them, but to lift them was impossible to do. I had to physically lift them up with my hands. Once again, I ignored it and did not tell my doctor about it.
When I was 30, I became pregnant. Two months into my pregnancy I had a miscarriage. When I became pregnant again, I had a lot of health issues begin. I was dx’d with Graves Disease two months into my pregnancy. I struggled with the symptoms of having a disease along with pregnancy issues.
After the birth of my child, I was doing well until the third month. I had stiffness in my right wrist that was extremely painful. I also had hip pain that made walking difficult.
Eight months later, my Graves Disease began to flare up again with constant shaky hands, heart palpitations, losing weight, hair, constantly overheated even in the dead of winter. I became very irritable and short fused. My Endocrinologist decided it was time to do something more to control my thyroid. He gave me 3 options, 1= pills that would make it difficult to have more children, 2= surgery or 3= RAI. (Radio Active Iodine).
I was about to get married that summer which was 4 months away from my decision. Of course, being the bride, you want to look your best, and surgery would have caused a scar, so I decided against surgery. I definitely wanted to have more children, so taking the pill was also out of the question. I decided to go with the RAI. It consisted of 3 days to go into the hospital, take a pill, go home. I had to do this for 3 days. After the 3 days, I could not be around anyone for a week until the radiation left my body. I thought this was easy and harmless.
Two months later, my thyroid took a dangerous turn. I became so hypoactive I was pretty much dead. I literally could not talk, slurred speech , very, very fatigued , my skin started to turn grey, I gained 16 lbs. in two weeks. I had no energy to do anything, I had weak muscles and could not walk quickly or get upstairs too easily. I was still a determined person and still went to work. On this particular day, my coworkers kept asking me if I was ok. I was told how my coloring was grey looking, and I knew something serious was wrong.
I called my Endo and I told the secretary that I felt like today was my last day on this earth ( that’s how sick I was) I asked to see my doctor and she said that there was not an opening until June ( this was April when I called). I immediately called my General Practitioner and she told me to get there right away.
When I got there ( which was in slow motion) barely able to drive, she saw me right away. She popped a synthroid in my mouth and told me to chew it up and swallow. I cried and asked her if I was going to die. She consoled me and then called my Endocrinologist and I could hear her speaking with him about how I was brushed off by the secretary and that I was in serious condition. I was sent to him right from her office to his which was right up the road. He also prescribed me Cytomel to speed up the hormone replacement pill to get me out of the danger zone of either coma, or death.
I started to feel much better and was able to have a perfect wedding. I was feeling like I had an angel watching over me to make sure everything went well.
One month after my wedding, I started to have problems with my eyes. They felt gritty, itchy, and watery. I noticed that I had really large bags under my eyes and that my right lid looked a little higher than the left. My Endocrinologist measured my eyes with a special instrument and immediately set me up with an Ophthalmologist.
My Ophthalmologist confirmed I had Thyroid Eye Disease. I was horrified. I was devastated and couldn’t believe what was happening to me. My life was just beginning. I had just gotten married, my son was 2 yrs old and I was at a job that I loved so much.
I went through a great deal of depression and insecurities. My eyes began to get larger and become more noticeable. I had a hard time being in windy and sunny conditions because my eyes were so sensitive.
I still fought this disgusting and horrible battle of a disease and went to work. I had the maintenance workers take out some light bulbs out of the classroom that I worked in daily. I was wearing sunglasses to work to protect my eyes as well as cover up the changes that were taking place. One year after the Thyroid Eye Disease diagnosis, I underwent radiation to both eyes everyday for two weeks. I did this treatment during my lunch time so I did not have to take time off. I had to wear a special mask over my face and was bolted down to a table. The radiation beam was quick, but scary at the same time.
I started to lose my hair around the hairline and part of my eyebrows. I had to have this done to stop the growing of my eyes. I was very uncomfortable and my depression was getting worse. During this time, I was seeing an Eye surgeon that discussed surgery to settle the eyes back into place. The following year, I had my first surgery to my eyes.
I thought that I was only going to be out of work for 3 possibly 4 weeks. This first surgery was called Orbital Decompression. The bones around the eye sockets were chipped away to make room for my eye balls to settle back in. If I did not have this surgery, I was in danger of losing my vision. After my surgery, I noticed that my right eye had some blurriness, and color changes along with dimness of light. I also had constant double vision so at this point, was not driving.
In January of 2008, I had gone to see my Optic Nerve Specialist. He examined my eyes and took pictures, and did multiple tests. I was diagnosed with having Ischemic Optic Neuropathy. I had no idea how serious this was. He told me absolutely no lifting anything over 40 pounds. I told him how my job requires to be able to lift up to 60 pounds and even asked him if he could change the amount on my back to work slip so I can return.
He put his hands on my shoulders and looked me dead in the eye and said, “ Do you value your vision?” I said, “yes”, he said “Absolutely NO LIFTING or you could go blind in your right eye!” I was scared, I cried, I was angry that I could not go back to work.
I had to go to my work to discuss with them that I am unable to return at the time, and that my Optic Nerve Specialist has my next appt. set for Dec. 2008 which was 11 months later.
My disability payments were soon to be done in March. I was going to lose my job of 16 years, my health insurance was about to end and I had no way out of this horrible mess that I was in. My health began to decline.
During the month of January 2008, I had my first attack of neurological problems that was noticed by my family doctor. I started to slur my speech, and I called my Endocrinologist because I assumed it was my thyroid. I was sent for blood work but my levels were in the normal range and my Endo. did not believe it was my thyroid that was causing me to have slurred speech to last for two weeks. I also had poor word recall, and short term memory loss.
My family doctor had sent me to a neurologist and then I was referred to a heart doctor. I underwent multiple tests, EEG, TEE, Carotid Doppler, MRI and more blood work. My MRI was clear, my EEG was abnormal and I also was told that I had mitral valve prolapse.
This neurologist, diagnosed me with having a TIA (mini stroke) I was immediately called and was told to start taking a prescription blood thinner. He also put me on another medication because my homocystine levels were elevated.
Devastation took over me. I was now dealing with worry about having a full blown stroke at the age of 36. I became very depressed and was put on a medication to help with this stress that I was going through.
March of 2008, I underwent my second eye surgery to correct the eyelid retraction. My eyelids were very high and did not close properly causing extreme dryness and constant tearing. I was in danger of having corneal ulcers due to this. Close to one month later, after having this surgery, I became extremely lightheaded. I was very dizzy and had a hard time walking due to this. I began stumbling and feeling like the ground was sinking in while walking. I was still dealing with double vision and was going back and forth to the Eye muscle surgeon to discuss putting prisms in my glasses until my eye muscle surgery.
Over the summer months, which was 3 to 4 months after my surgery, I had a very strong pain come over my left shoulder, from my neck to my fingers. The pain was worse when lying down, which made sleeping very difficult. I thought I was having a heart attack and woke my husband screaming and crying in pain.
I had an MRI and -X-rays done of my neck, shoulder and back. I was also having severe pain in my hip which made walking very slowed and was very unsteady. MRI showed cervical disc bulges in c5 -6 area. X-rays showed scoliosis curved to the left and arthritis in the hips.
During this time, I was in the process of going for social security disability and had multiple doctor appts. and struggling with showing proof of my disability to my lawyer, which in my case, I had a ton, however, it was still a 2 yr. process.
Sept. 08, Eye muscle surgery. Very painful, and practically was blind for a week. I had adjustable sutures, so after the initial surgery, and I was awoken, the surgeons put numbing drops in my eyes to adjust the sutures while I was awake. It was horrifying but I was brave to get through it. I needed constant assistance for all of my daily living, as I could not see. The pain I felt in my eyes was like needles and onions stabbing my eyes anytime I tried to open them. Once the healing started, I was still experiencing double vision. Little by little , each day, my double vision was occurring more looking to the sides rather than in front of me. I thought at this point, things were going to start to get better.
By January 2009, slurred speech struck again. This time it lasted for two weeks. I was actually going to see my neurologist the very next day. I felt it coming on, so I didn’t call, I just went to my appt. I was assessed by the Nurse Practitioner. Nothing was done. Here I thought , Oh my God, I am going to have a stroke, but they didn’t even send me to the hospital, nor did they take me serious. I said how dizzy I was for 8 months, and how I could feel the muscles in my face tighten up, especially my jaw, throat and tongue. I was sent home with the advice to drink more water. I was very frustrated and eventually decided it was time to get a different neurologist.
I had other issues arise that were neurological in nature throughout 2009 and 2010. I found a new neurologist and was sent through the ringer of tests all over again. Blood work to rule out other diseases, MRI of brain, cervical spine and lumbar. I had a repeated EEG and was diagnosed with simple partial seizures.
Because of this diagnosis, I had two other EEG’s scheduled and both were abnormal. I was diagnosed with having hyperreflexia and anxiety disorder. I was not happy with the anxiety disorder diagnosis, because to me, this was not my real issue. Something else has been going on, and my neurologists are not putting the whole picture together.
Some of the symptoms I have had are slurred speech, optic nerve damage, double vision, nystagmus, hyperreflexia, tremor in left hand, instability, weakness of the legs, cold patch on left side of face, buzzing in left foot, twitching muscle in left thumb, and left shoulder blade, numbness above left knee, left hand itch for 3 yrs. Lightheadedness for 8 months, face pain that radiates deep into the ear which happened at different times but affected each ear. Pain that shocked me when bending my head forward. Constant back pain, muscle cramping in the same places, upper right thigh and upper shoulder blade /neck to middle of the back spasms.
Just recently I underwent my 4th surgery on my eyes. This surgery was to put an implant in both of my eyes, because they were sinking to far in and pointing downward. I was unable to see below me and had difficulty with steps, curbs, or uneven ground. I also had to undergo a sinus surgery to correct a deviated septum which was done at the same time of my orbital implants. I am still feeling the effects of that surgery, almost 3 months later. I am still having a hard time breathing, my right side of my nose is numb, and I wear an eye patch on my glasses all day just so I could see what I am doing.
I have a hard time with depth perception, and when I reach for something, I either overshoot or undershoot my target, as well as the tremor in my left hand becomes more pronounced with movement.
I thought at first, it was my Graves Disease, then I thought, maybe I had MS, but MRI’s are clear. I turned towards possible Lyme Disease, but once again, nothing.
I will soon go for an Evoked Potential, Visual Evoked Potential and EEG. Not sure if this will make a difference, but its worth a shot at figuring out what my health issues are coming from. I know anxiety and stress can cause a lot of problems, especially neurological, but I do not believe that this is my only problem.
I am at a stand still, not knowing is the hardest part, but I will remain strong and someday, I will know what this is that is happening to me.
I don’t know what else I could do.
Thanks to all that took the time to read this.