I took a look at Clinicaltrials.gov.

After reading a Tweet that discussed clinical trials, I decided to, once again, visit http://clinicaltrials.gov/. On this site, you can find various clinical health trials that are being done.

So, I typed in Dystonia and Cervical Dystonia. There were quite a few listed trials. But, due to my internal sensitivities (i.e. sensitivities to meds, autoimmune issues, etc.), I'm not willing to participate in trials that involve receiving medications or trials that involve invasive procedures (naturally, most of the trials involved chemically invasive procedures).

However, I did find one, potential trial that discusses the usage of Botox to treat Cervical Dystonia. It doesn't appear that this trial requires anything besides observing my response to Botox injections. So, I emailed the group that is overseeing this study to ask some general questions. We'll see what I get back.

I also put in searches such as "Grave's Disease and Dystonia." The search gave me nothing. Online, I have come across quite a few people who have this combination--just as I do. So, this would make for an interesting investigation.

I would love to be part of a research study or investigation that would simply investigate my medical history in conjunction with the history of others who have incurable, hard-to-treat diorders/illnesses.

Studies that I would personally like to participate/offer information to would be studies involving: Cervical Dystonia, Grave's Disease, The effects of Synthroid in treating Hypothyroidism, The effects of Natural Thyroid Hormone in treating Hypothyroidism, Metabolism in relation to Grave's Disease, etc.

As I said, I don't want to be poked and prodded with injections. I just want to be an observation and/or an oral history research participant--so to speak. Maybe the researchers could learn a few things from hearing about my journey.

Researchers and scientists could learn a whole lot more if they, first, focused on the "listening" before trying to focus on the treatment or drug aspect of studies.

Sometimes, it's just best to ask questions and listen to the answers when trying to figure out something--in this case, when trying to figure out the best treatment options for various health conditions. This listening approach could possibly lead to more curative conclusions versus band aide treatments.

Who knows? Pending the right conditions, maybe I'll be a "lab rat" one day.

Botox Injection Day

Today, I had a Botox injection appointment (Not for wrinkles--LOL; for the Cervical Dystonia). My last set of injections were done about three months ago. My neurologist injected me six times in various locations of my neck. Of course, I cried. Thankfully, my mother was there to hold my hand. I hope the spasms (especially on the right side of my neck) will get considerably better with this treatment. As usual, I'm glad that's over with!

Drug Induced Drowsiness: The Effects of Taking Flexeril

I started taking Flexeril, a strong muscle relaxant prescribed for the severe muscle spasms in my neck. The reason I don't like medicine is because I seem to be a magnet for side effects. I prayed that Flexeril would be different. But, there went that magnet again...My heart flutters even more and the medicine makes me extremely drowsy.

When I take it (one pill), I feel literally drugged for quite a while. When I take Flexeril, I always take it in the evening, because I know that I will be no good at all if I take it during the day. The next day I feel all tingly and sort of like I am there but not there. I don't like that feeling. It takes at least a day and a half to two days for it to wear off. Actually, I want to say that I still have it in my system even after two days.

My prescription says to take it three times a day. Boy, I would really feel like a zombie if I took it three times a day! So, I've been taking it at the height of spasms--when I can't take the discomfort of tightened neck muscles anymore. So, I've been taking it a few times a week (one pill per day; a few times a week).

The Flexeril helps to loosen the muscles in my neck a little. But, I can't seem to fully enjoy the effects, because I can't mentally focus due to the drug induced drowsiness. I've also noticed that the muscles in the front of my neck tighten up more once the Flexeril starts to wear off. I have no idea why that seems to be happening.

Also, I've noticed actual pain shooting up, occasionally, in my right arm and the left side of my neck. This used to be common (pain and spasms all over), but Botox shots have helped to cover the pain, to a certain extent, in these areas. I'm not sure if the reoccurring pain is because the effects from the last Botox shot are wearing off and I need another shot or if it's because the weather is becoming colder and rainier.

I am scheduled for another Botox shot during the middle of November. Hopefully, I will receive more relief for the constantly spasming right side of my neck. That would be wonderful.

No Surgery For Me

I was due to have surgery on Friday. I went to the hospital yesterday (Wednesday) for my preadmission physical before undergoing surgery for a rectal mass. The doctors don't seem too concerned about it, but I was advised to get it out before it could potentially turn into something. The point of the preadmission physical was mainly to determine how I might react to the anesthesia during surgery.

During the physical, I saw a physician's assistant who did the basics like taking my blood pressure. Then, I saw someone who took my blood and performed the EKG. Then, the nurse came in and told me how to prepare for the surgery (i.e. my last meal, washing with bacterial soap the day before the procedure, etc). They were all very nice and personable.

The physician's assistant was very concerned about my rapid heart rate. Yesterday, my heart rate was 132. The highest that it has gotten to my knowledge is 150. The normal range for a heart rate, from my understanding, is 60 to 90 beats per minute.

I explained to him that I have Grave's Disease. "That shouldn't be why your heart rate is so fast," he said. His girlfriend has Grave's Disease, and she's on Synthroid and she's just fine (Everyone is an expert--LOL). I told him that I was glad for her, but I'm an unusual case and the poster child for side effects.

I have always been concerned about my rapid heart rate. On several occasions, I have been diagnosed with tachycardia (I always mispronounce that word). According to Webster's Dictionary, the definition of tachycardia is: an abnormally rapid heartbeat, caused by disease, medication, drugs, exercise, or emotional distress.

So, let's see: I have Grave's Disease (disease), I take thyroid medication (medication/drugs) and I've been taking a muscle relaxant (medication/drugs), and I was in the hospital--with spasms in my neck due to Dystonia-- a few days before a scheduled surgery(emotional distress). Hey, four out of five possibilites ain't bad.

The PA told me that I should be on a beta blocker, because it would help to slow my heart rate down. For years, I've been told that I need to be on one. However, one of the listed side effects on my last prescription for beta blockers--which I didn't take--said that it could cause the heart to stop. So, I figured that a fast heart rate would be better than none at all.

The PA did get me thinking, though. He informed me of a study that included 70,000 people. The conclusion of the study was that people who needed beta blockers and took beta blockers lived longer than those who did not take them. He also told me that I can't keep walking around with my heart beating so fast. Even though I've been resistant in the past, I'm thinking about going back to a cardiologist and having them prescribe the bb's for me. I will pray on it. Obviously, I hate medication and I hate side effects (i.e. drowsiness). So, we'll see...

As of this morning, I had not received a call telling me whether or not I would be approved for surgery. I prayed on it and talked to my husband and my mother. So, to make a long story shorter, I decided to cancel my procedure--before the decision was made for me. I simply did not feel comfortable being under anesthesia with my rapid heart rate.

And, by the way, I do greatly appreciate the PA's concern. He could've just given me the typical response, "It'll be okay. There's nothing to worry about." I'm so glad that he took the time to care.

I Had the Colonoscopy...

Due to my history of intestinal infections and other health issues, my Gastroenterologist decided to further investigate the condition of my intestines.

In July, I had a procedure done called an Upper GI Endoscopy. The purpose of this procedure is to investigate the upper portion of the intestines (the esophagus, stomach, and duodenum).

Prior to the procedure, I was sedated into a "twilight" sleep. During the procedure, the doctor removed four polyps, and a biopsy (a usual procedure done when polyps are found) was performed on the polyps. I was told that the polyps that were removed from my small intestine were called Fundic Gland Polyps. Thankfully, the polyps were benign.

Due to my age of 36 (most people with the above type of polyps are older), my doctor inquired about my familial history of polyps. While, I have a few family members--on my mother's side of the family--who have undergone Colonoscopies, none of my relatives have been told that they had this type of polyp. Although, a second cousin on my father's side of the family recently passed away at the age of 47 from Colon Cancer, I do not have a thorough knowledge about the medical history of people who are on my father's side of the family.

Understandably, my Gastroenterologist suggested that I have a Colonoscopy. A Colonoscopy is a procedure that allows the doctor to view the large intestine which is made up of the rectum and the colon. So, I had the Colonoscopy on Friday.

There is no necessary preparation for an Upper GI Endoscopy, but there is a preparation process for the Colonoscopy. There are various preparation kits, but my preparation process included drinking a 10 oz. glass of chilled Magnesium Citrate and taking 6 Dulcolax tablets. The purpose of the preparation is to cleanse the system of fecal matter so that the doctor will be able to clearly see inside of the colon. Needless to say, I did not sleep well that night due to the "cleansing" of my system.

While the medical staff was very pleasant and accommodating, I did receive somewhat of a surprise just prior to being taken into the room for the procedure. I was told that I would be having the Colonoscopy AND another Upper GI Endoscopy procedure. According to my doctor-- during the procedure that was done in July--he had found 13 more small, Fundic Gland Polyps in my Upper GI tract. He said that the polyps were not cancerous but could turn into cancer, so it was best to remove them. While I was a bit disturbed that I hadn't been informed of these polyps (I had only been told about 4 of the polyps), I--of course--agreed to the additional procedure, because I knew it was in my best interest.

Once again, I was placed into a "twilight" sleep. During my procedure, 13 polyps were removed from the Upper GI Tract, and two polyps were identified in the colon. One of the Colon Polyps was removed. I thought that this would be the final procedure regarding my intestines, but my Gastroenterologist referred me to a surgeon to remove the other Colon Polyp. My Gastroenterologist said he did not feel comfortable removing the polyp due to its large size and positioning within my colon. So, my next step is to consult with the surgeon.

***Please note: Due to the Colonoscopy being such a good indicator of potential colon cancer, it is currently recommended that people have a Colonoscopy every ten years, starting at age 50. For people who have risk factors (i.e. familial history of colon cancer), there may be an earlier age recommendation, and it may be recommended that the procedure occur on a more frequent basis.

References/Resources:

http://www.webmd.com/colorectal-cancer/colonoscopy-16695
General information: Colonoscopy

http://digestive.niddk.nih.gov/ddiseases/pubs/upperendoscopy/

Information: Upper GI Endoscopy

http://www.gihealth.com/html/education/colonpolyps.html
general information about colon polyps

http://en.wikipedia.org/wiki/Fundic_gland_polyposis
Information about Fundic Gland Polyps

Colonoscopy

I am scheduled for a Colonoscopy. I am not looking forward to that. Last month, I had an Upper GI Endoscopy. That procedure went pretty well. I was nervous, but I passed out pretty quickly after all of the drugs were given to me through an IV.

The test revealed that I had about five Fundic Gland Polyps. Thankfully they were benign. But, the doctor asked if a I had a familial history of polyps, because it was unusual for someone my age to have these types of polyps (I'm 36). I have had a few relatives who have had polyps removed, but they are older than I am. Then again, I seem to get quite a few things that are out of the usual .

I was scheduled to have a Colonoscopy last year. During that time, I was so sick and had just been diagnosed with the Dystonia. Besides, I did attempt to go through with the procedure, but I kept getting sick (vomiting) after taking the preparation to clear the system. So, I took that as a sign that I didn't need to do it.

This time, they're giving me a different type of preparation. On the day prior to the procedure I can't eat or drink anything except clear fluids. I will be allowed to take my Thyroid medication in the morning. But, I am supposed to skip my afternoon dosage. That concerns me, because I get fatigued when I skip a dosage of my thyroid medication. On top of that, I'll be hungry too. I might not me the nicest person to be around on that day.

I pray that everything will be okay. I'm the first one of my friends to have this done. I feel special (Not!).

A Visit With My Doctor

I had an appointment with my internist. I needed her to fill out/update some paperwork regarding my leave from work. It went very well. This doctor was the first and only doctor to send me to a neurologist when I started showing symptoms of Dystonia.

We had a pleasant conversation. After filling out the paperwork she turned to me and said, "You know that in less than 100 years they'll be able to figure out the gene causing Dystonia and basically cure it."

From there we had a further discussion. She mentioned how my illness had genetic components. I told her that I agreed with that even though my genetic test came back negative. I totally theorize that there has to be a genetic component--it just takes the right trigger. Unfortunately, I had the right trigger (i.e. environmental, etc.) to get Dystonia.

She also mentioned ties between asthma and allergies. She discussed other illnesses and how researchers are finally making connections with allergies, genetics, etc. I'm glad that such research is going on. Hopefully this type of ongoing research will potentially help many people who are suffering from a variety of illnesses.

My doctor gave me a wonderful compliment by saying that she could tell that I was highly intelligent. My doctor inspired me to basically find my niche even if it's not being able to go back into the classroom as a teacher. As she said, "You can teach in other ways." Sometimes you just need to be inspired by others.

I told her that I really appreciated her taking the time to talk with me. I like the fact that a lot of her "out of the box" thinking is along the same lines of my thinking in terms of health and research.

My doctor encouraged me to keep reading and finding out information. She stated, "Sometimes the patient teaches the doctor." She even gave me a few book titles to read. I have NEVER had this type of conversation with any of my doctors.

I truly appreciate her taking the time with me. Thanks, Doctor. Hopefully, we can share again.

Follow-up Appointment with my Allergist

In May, I had a follow-up appointment with my allergist. In February of this year, I decided to have a food allergy test and a scratch test done to determine any allergies. I felt this might be necessary based on reading articles/books that pointed me in the direction that food allergies could contribute to Autoimmune Disorders as well as other conditions/illnesses.



The scratch test revealed that I had allergies to items such as Dust Mites and grass. That was no big surprise. The food allergy test revealed a sensitivity to 14 foods. I wasn't that surprised, because I figured that I had Leaky Gut Syndrome, and food sensitivities are quite common in people with LGS.

So, I was told to stop eating those foods (i.e. dairy, Salmon, corn, etc.) for six months. When I went for my follow-up appointment in May, the doctor was nice enough to go ahead and retest me for food sensitivities instead of having me wait to be retested in September. I was happy, because I have been very hungry due to my limited diet.



The results showed that my IGE levels went down on all foods. So, he told me to gradually introduce dairy and corn into my diet. Then, he said that we would focus on introducing the other items when I visit his office in September.



My allergists said that he would actually have me do a challenge test in the office for items such as nuts, because they can be potentially dangerous for people who have allergies/sensitivities. I appreciate his caution.



I also asked the doctor to do a test that would test me for Celiac Disease and Gluten Sensitivity. Luckily, the test came back negative. But, I have read that a negative test does not necessarily mean that you do not have a sensitivity to Gluten.



The doctor also clarified a few things for me. The test that was given to me was an IGE test. The results are based on a numerical range. The results of my test showed that most of my levels were at a 2. For Dairy and mushrooms, my IGE levels were a 3.



My doctor told me that a level of 2 or higher is reason for concern. I asked him what could have happened if I had not come in to get this test? He said that if my increasing numbers had reached a 6, I could have been at risk for Anaphylactic Shock. I had read/heard stories about Anaphylactic Shock--a severe reaction-- in people who were allergic to peanuts but ingested peanuts.

I am blessed that I was lead to have an allergy test. I simply wanted the food allergy test because of my intestinal issues and the belief that food sensitivities/allergies can make you sicker. I did not realize that I was at risk for potentially developing a severe, life-threatening reaction to certain foods. I truly learn something new everyday.

My doctor also informed me that if I develop food sensitivities again, I may have to go through the elimination of foods once more. He said that patients with my issue (food sensitivities) usually have to undergo this type of diet restriction no more than twice. Hopefully, I won't have to go through that again!


In my upcoming "What Have I Been Doing Lately?" posts, I will discuss my follow-up appointments with my Integrative Doctor and Gastroenterologist.

What Have I Been Doing Lately: A New Section in My Blog

I am starting a "What Have I Been Doing Lately?" section. I am not done writing the "My Story" section. I did not realize how long "My Story" would take. I will keep writing, but sometimes I take a break.

"What Have I Been Doing Lately?" will focus on more up-to- date information about my health related issues. For example, if I go to the doctor, I may write about that visit.

Please keep reading "My Story" and the other posts. To keep up with my posts, it may be best to follow the "Labels" section which is to the right of this blog.

Once again, thanks for reading this blog. It is therapeutic for me to write, and I hope I'm helping someone in the process! Your comments also mean a lot. They let me know that others are reading this blog...and that keeps me motivated to keep on writing.

God Bless!