Thursday, August 30, 2007
You have just enrolled in an employer sponsored HMO medical plan. Your preferred primary care physician does not accept the new insurance, so you are forced to choose a new primary care physician. You pick a doctor at random from a list of physicians in your area. Once your coverage begins, you decide to make an appointment, because you have been having frequent headaches. You find out that there is a two-month wait for an appointment, so you make an appointment, because the headaches are getting worse.
After you wait the two months, you finally get to visit your new doctor. You arrive 30 minutes early as instructed, because being a new patient, you have paperwork to fill out. You then wait for an hour and fifteen minutes in the waiting room. Finally, your name is called by a nurse, who takes your vital signs. She then takes you into an exam room and tells you the doctor will be right in. After another 30 minutes of waiting in the exam room, the doctor finally comes in. He very quickly introduces himself and inquires about the reason for your visit. While you are explaining the reason for your visit, trying to give as much information as possible, he interrupts you before you are finished. He then states that you are experiencing stress related headaches, and he suggests that you reduce your stress levels, take an over the counter pain reliever as needed, and call to make a follow-up appointment in two months if the headaches are still occurring.
Before the doctor can leave the room, you try to explain that you have no additional stress at this time, and the over the counter medication is not covering the pain. The doctor discounts your explanation, and he repeats that he believes they are classic, stress related headaches. He then informs you that you can be under stress without even realizing it. The doctor refuses to prescribe a stronger pain reliever, but he does offer you an anti-depressant to “calm” your stress. You politely decline the anti-depressant, and you decide to go along with his first suggestion. Before you can ask any additional questions, the doctor thanks you and leaves the exam room. This entire visit lasted approximately five minutes, and you leave the office with the same treatment plan you had already been doing prior to the appointment.
Rather than take a wait and see approach, you decide that it might be quicker to change to another primary care physician through your insurance. Unfortunately, you now realize that you have a 50/50 chance of choosing a new physician that is just like the one you just saw. You really do not have any other option but to find a new physician, because you know that if your primary care physician is patient friendly, you are more likely to have your headaches addressed more thoroughly. You are also more likely to obtain a resolution for these headaches that have become such a disruption in your life.
This type of scenario occurs more often than it should. Imagine how much time is wasted, while you search for a new primary care physician who is patient friendly, and wait for that initial appointment. Depending on the circumstances, you might be looking at one to three more months until you are able to see the new primary care physician. In the interim, your symptoms continue to worsen and are affecting your quality of living.
Do you choose another primary care physician from a list of approved doctors at random? Or do you come up with a plan of action that might increase your odds of finding the right physician for your needs? I had to make this choice, and I came up with a plan.
The following are some of the methods that I have used to assist me when looking for a primary care physician or specialist. Although these methods are not a guarantee, I have found that putting them into practice does increase the odds in your favor.
Talk to friends and family - I have always believed that word of mouth is the best advertisement that money cannot buy. This was the first method that I put in to practice, and I found my first patient friendly physician. It only took one visit with the physician to realize that the reference I received from a friend led me to a physician that I was able to establish a strong doctor / patient relationship with. Not only was he an exceptional physician, but he was one of those rare physicians that gave you the amount of time necessary during your appointment, in order to deal with your medical issue. This physician never hesitated to order tests, and he never hesitated to refer me to a specialist. I remained with this physician until he retired from practice.
Talk to your current doctor – If you find yourself in a situation like I had, where your primary care physician is retiring, or will no longer be seeing patients for another reason, ask for advice on a replacement physician. My physician already had a replacement physician lined up. This was a benefit to me, because my retiring physician made sure that my new physician understood that I had a condition that was not yet diagnosed. On my first visit with my new primary care physician, he was already aware of who I was and had been advised of my medical history. This physician remains my primary care physician to this date. If your physician does not have his / her replacement lined up, ask whom he / she would recommend.
Look to the Internet – There are multiple free sites on the internet that will not only provide a list of physicians in your area, but many also include a rating for each physician. One such website is called “Find a Doctor”, and I will include a link to this site in the “Links” section. On this site, you can search for a primary care physician, specialist, or dentist. You can also see how other patients rate the physicians. Additionally, what I like about this site is that physicians list themselves on the site. They are reaching out to find new patients, which in my opinion, may indicate that they might have more time to deal with a patient’s issues, because they have not reached the point where they are continuously overbooked. Once you have selected a physician, you can then check to see if that physician accepts your insurance. Additionally, it is often wise to contact the physician’s office to make certain he / she is accepting new patients. If you have an HMO, you will need to contact them to let them know that you wish to change your primary care physician. Those with a PPO need only to make an appointment.
Look to Your Insurance Company – Most, if not all insurance companies, supply an online directory of covered physicians in their plans. Additionally, I know of at least one insurance company, that actually includes a rating system for physicians and hospitals.
Background Check – This is not as in depth as it may sound. I make it a practice to go to the California Medical Board’s website and look up any physician that I plan to see. The website will not only confirm that the physician you have selected is licensed to practice medicine, but it will also let you know if the physician has any disciplinary actions against him / her. I will include a link for this site in the “Links” Section.
Do a General Internet Search – Once you have selected a physician, perform an internet search using your favorite search engine. This is best done using the advanced search feature. Once the search is complete, the results might include medical articles published by the physician, information about professional associations, the physician’s website, etc. This type of information could be very relevant, especially if you are searching for a specialist who sub-specializes in a particular field of medicine, such as a Movement Disorder Specialist.
In my humble opinion, for those who are searching for a primary care physician, the best method to use is talking to friends and family. A primary care physician is a person with whom you are looking to establish a trusted relationship with. A reference from a patient, who already has that type of relationship with a physician, is a strong indicator that the physician is patient friendly.
When searching for a specialist, it does not seem as common to have a friend or family member who can provide a reference. If you are lucky enough to have a friend or family member who can provide a reference, that is still the preferred method. Otherwise, I have found that the best way to search is through the internet. Many specialists are not only listed on sites such as “Find a Doctor”, but many are also published and have professional affiliations, which can provide a wealth of knowledge with respect to their expertise. Unfortunately, expertise does not guarantee a physician will be patient friendly, so there is still a higher risk that a specialist may or may not be patient friendly.
For those people who have an HMO and are referred to a specialist by their primary care physician, I would still recommend finding out as much information as possible about the specialist. I have found that knowing as much as possible about a specialist, better prepares me for the appointment. Since I do not have control over which specialist I see, I feel more confident when I do at least know his / her background and expertise.
In a future post, I will address the subject of specialists a little more in depth. I will discuss why I chose to see specialists, outside of my insurance as a private pay patient, and the results of those visits. I will also address how I was able to see a Movement Disorder Specialist, using my insurance, because of the type of condition I have. Finally, the most important aspect I will address when trying to find the right specialist, is persistence. Being persistent, as well as firm about your expectations and requirements, are key factors in finding the primary care physician or specialist who you can build a trusting relationship with.
The specialists consist of three neurologists, four movement disorder specialists, and one rheumatologist. For obvious reasons, names of these physicians are not revealed.
On this list, I have included a few sub-categories of opinions and treatments rendered by doctors, based on my personal experiences. I have also included the number of physicians in each category that I would consider as indifferent / difficult to deal with or as concerned / patient friendly.
Additionally, for specialists only, I included the number of specialists that I was referred to by my HMO insurance, and the number of specialists that I self referred to, as well as paid cash to see. (This is for reference only, and the issue of self-referral will be addressed in a future writing.)
Number of Primary Care Physicians 5
Ordered x-rays only 2
Ordered no tests 1
Ordered Multiple Tests 2
Stated symptoms due to depression 4
Prescribed anti-depressants 3
Stated symptoms due to gender 2
Indifferent / difficult to deal with 3
Concerned / patient friendly 2
Number of Surgeons 3
Ordered Tests 3
Performed needed surgery 3
Concerned / patient friendly 3
Number of Specialists 8
Stated symptoms due to depression 1
Prescribed anti-depressants 1
Stated symptoms due to age / gender 1
Indifferent / difficult to deal with 4
Covered by insurance 3
Private Pay, Self-Referred 1
Concerned / patient friendly 4
Covered by insurance 2
Private Pay, Self-Referred 2
Although this list only represents my experiences with physicians, as I look at the numbers, they increase my understanding of why it was so difficult to find concerned / patient friendly physicians over the years. For example:
- Four out of five primary care physicians attributed physical symptoms to depression, and three of the five prescribed anti-depressants, after little or no testing.
- Surgeons ranked higher than any other physician did. Three out of three surgeons ordered needed testing and performed necessary surgeries with satisfactory outcomes.
- Four out of eight specialists were indifferent / difficult to deal with.
From this point on, I will only address primary care physicians and specialists. Based on my list, the surgeons I dealt with, not only were thorough, but also were concerned / patient friendly physicians. My theory is that, outside of emergencies, surgeons deal primarily with specific conditions that can be confirmed through testing, prior to any surgery taking place. More often than not, if a patient is referred to a surgeon, an existing condition has already established. Additional testing requested by a surgeon, in addition to the examination by the surgeon, confirms whether a surgery is necessary or not.
As I looked at the number of indifferent / difficult to deal with physicians and compared it to the number of concerned / patient friendly physicians, it dawned on me that there were almost equal numbers of each. Therefore, 50% of the physicians were indifferent / difficult to deal with, and 50% of physicians were concerned / patient friendly. Consequently, each time I saw a new physician, there was a 50/50 chance that physician would be someone I could establish a good relationship with. Of the five primary care physicians, there were only two that I established a long-term doctor / patient relationship with. I consider both to be exceptional physicians.
Like me, if you have an HMO, you do not have much choice with respect to the specialists you are referred to. The choice that you do have is to choose a primary care physician that is not only concerned / patient friendly, but also one who you have the ability to build a strong doctor / patient relationship with. This type of physician will be willing to listen, be more willing to request the appropriate testing, and will not hesitate to refer you to a specialist if needed. If your primary care physician appears not to be looking out for your best interest, contact your HMO and find a new primary care physician immediately. Your primary care physician is the key to your health, even if you are not experiencing symptoms of a chronic condition. Having a good relationship with your primary care physician can save time when trying to obtain a diagnosis.
Although I do not have personal experience with a PPO, it is my understanding that having a PPO enables you to see any affiliated physician of your choosing. If you choose to see a primary care physician, and he / she appears not to be looking out for your best interest, immediately find another physician. Again, it is my understanding that you have the option to self refer, even to a specialist, without having to contact your PPO. This availability will save time, which is so important to any patient who is seeking a diagnosis. If your situation is urgent, and you do have this option, seek out an appropriate specialist first, and replace your primary care physician afterward. Having a PPO does not mean you should give up finding a concerned / patient friendly primary care physician. It only means that you have more options when faced with a potentially urgent or chronic medical condition.
If you have spent a significant amount of time searching for a diagnosis for your symptoms, and you have experienced difficulties, sit down and make a list of the physicians you have met with and what the results of your visits were. If you find that you also are having difficulty finding concerned / patient friendly physicians, you now recognize that finding the right physician needs to be the primary goal that will enable you to move forward.
The bottom line is that we need to increase our odds of finding physicians who we can have a good doctor / patient relationship with. In my next post, I will offer some tips that I found useful, that may be of assistance to patients who are searching for a new primary care physician or a specialist. These suggestions can be applied to patients who have either an HMO or a PPO.
Tuesday, August 28, 2007
Although there were a few other times that my back went out briefly, it was in 1996 that I actually experienced any pain. I had bent over to pick something up off the floor, and I felt a stab of pain in my lower back that radiated into my left leg. For approximately three weeks, my lower back had excruciating pain along with the radiating leg pain.
It was not until late 1996 that I first sought medical treatment. After a few more times of my back hurting with the accompanying leg pain, I went to my primary doctor. Additionally I had left hip pain and a crunching sound that had developed. He initially did an x-ray of my hip for arthritis, but not of my spine, because he stated that he thought I only had a pulled muscle or that I was just under stress, so he gave me a prescription for Naprosyn. The x-ray of the hip was negative for arthritis, so he said that the pain was probably because I smoked or I was probably under stress. On about the third visit to this doctor for the same issues I asked if there were any other tests that could be done to try to find the underlying cause of the pain. He said that the only other test was an MRI and he would not order it, because he did not think it was necessary. Again, he reiterated that I was probably just stressed, needed to quit smoking, and that possibly I was suffering from depression. He stated that people my age did not have true back problems. I was 27 years old at the time. I decided that I was not going to return to a doctor about these issues.
Now we will fast forward to 1999 - 2000. I had a new primary doctor who acknowledged my back and hip pain, but again this one would not do any further testing due to my age. He, like the other doctor, suggested that I was either stressed or depressed and prescribed an anti-depressant. I knew I was not depressed, but I told him I would try it anyway. Needless to say that after a few months I told him I was not going to take it anymore, because it put me in a fog. He prescribed another one, to see if it would help. This one had the same result.
About the same time, I began having occipital headaches, which ran from my neck through the back of my head. I also began having blurred vision, which appeared to coincide with the headaches. Additionally, I began having some sort of pain under my right rib cage that would sometimes last for minutes or sometimes for days. This pain felt very muscular in nature, almost as if the upper abdominal muscles were tight from doing 1000 sit-ups. I had to go into his office a few times to get a shot to relieve the headaches. On the final visit for the headaches, my regular doctor was not available, so I saw another doctor at the office. He noted that I had been in several times for the headaches, so he decided to do a neurological exam. Based on that exam he suggested that he saw findings equivalent to early Multiple Sclerosis and that I needed to be followed up by my primary for a referral to a Neurologist. Additionally, he ordered an ultrasound to check for gallstones, which came up negative. When I went back to my primary doctor, he stated that he was not very interested in testing for Multiple Sclerosis, since there is not anything that can be done about it anyway with respect to treatment. I immediately began looking for a new doctor.
My new doctor turned out to be wonderful, although he did ask me to try the
anti-depressant route as the others had. Since he was willing to begin testing for physical problems as well, I went along with trying the anti-depressants. Within three months, he agreed that depression was not the issue, and I discontinued the anti-depressants, except for taking a small dosage of Amytriptelene for leg pain, which I was now having. He was able to rule out everything that he could through blood tests. He noted that I had winging of my right scapula and that my right shoulder was much lower than the left. Scoliosis was not an issue, and my leg lengths were equal. A Rheumatologist ruled out Fibromyalgia, but she was very concerned that I had bilateral leg weakness and pain. I had an MRI of the brain, which was normal. The MRI of the cervical spine noted a hard disc herniation at the C4-5 level that was “touching” the spinal cord. My lower spine showed disc herniations at L4-5, L5-S1, and other various signs of degeneration throughout the entire lumbar spine.
I was referred to a neurologist for assessment of Multiple Sclerosis. After spending approximately 30 minutes with me on the first visit and 15 minutes the second visit, he announced that he thought that I was just severely depressed and did not realize it. He said that the cervical herniation had nothing to do with my problems, although he never actually reviewed the MRI film. Additionally, he stated that my headaches were probably stress related and that many women in their early thirties begin having headaches due to hormone fluctuations. He tried prescribing another anti-depressant, and I told him I would not take it.
I was referred to another neurologist through my insurance, but he stated that he did not have any answers. I temporarily stopped trying to get any answers until after an incident that scared me half to death. I had an incident where all of a sudden I got extremely dizzy with vertigo and collapsed. The paramedics came and determined that I had not had a stroke. My ex-husband took me to urgent care the next morning. I was still unable to sit up or stand. It was determined again that I had not had a stroke. I was told that I probably had an inner ear problem, but there were not any tests to determine that. I was sent home. I was able to walk by the following day, but walked off-balance, looked like a drunk, for about three weeks. From that time on, I would continue to have vertigo and dizzy spells to a much lesser degree. I also began experiencing walking difficulties. It felt like my legs would get heavier and heavier the longer distance I walked, until it was too much of an effort to move anymore. They also began to give out, and I am very lucky that I was always able to grab onto something in order to prevent falling.
In 2001 I decided to see a Neurologist outside of my insurance to finally rule out Multiple Sclerosis. I contacted the Multiple Sclerosis Society who referred me to a doctor who specialized in Multiple Sclerosis. Although he did not believe that my problems were associated with MS, he did contact my primary doctor and let him know that they needed to finish testing for MS in order to completely rule it out. Therefore, my insurance did pay for an MRI of the thoracic spine, another MRI of my brain, evoked potentials, and a lumbar puncture. All tests came back normal, so MS was finally ruled out. Since there were findings during my neuro exam that he performed, he diagnosed myelopathy.
My primary doctor was hesitant to send me to a Neurosurgeon, because the first Neurologist that he had sent me to specifically stated that my problems were “not” due to my spine. Remember, he never physically saw the MRI and was only going off the radiologist’s report. Therefore, I spent several months taking painkillers, muscle relaxers, and going through physical therapy. Finally, the physical therapist said that he could not help me anymore and would let my primary doctor know. My legs had gotten very weak by this point, and physical therapy was not going to fix that problem.
I was finally sent to a Neurosurgeon in June of 2003. I was told to bring copies of my MRI. The surgeon examined me and looked at the films. He then pointed out to me where the hard disc was actually damaging the spinal cord at the C4-5 level. This was evident by a color change from black, which was how the rest of the spinal cord appeared, to white at the point where the damage was being done. He immediately began setting me up for surgery. My doctor was still hesitant about having me undergo surgery and only agreed after he spoke directly with the surgeon.
I had the surgery in August 2003. After the surgery I no longer had headaches, my legs did not feel heavy, the vertigo abated, and within about a year my leg strength appeared to be near normal. In hindsight, the only real issues that remained were the muscular lower rib cage pain, leg pain, and slowed walking. Because of the slowed walking, I believe I confused later specialists, because I never differentiated between the walking problems prior to surgery and after the surgery. I just used the term, “same walking problems” which was not accurate. It was within 6 months post surgery that the remaining problems and new emerging symptoms would set me on a new quest for answers.
In 2004, I began having speech problems, which initially manifested only during times of fatigue, stress or anger. It began as stuttering, not being able to speak the word I was thinking of, trying to remember the right word, and low speech volume. I began to have creepy crawly sensations in my legs when I would lie down to sleep as well as cramping in my feet and calves. It was also during this time that my ex-husband would state that I never smiled anymore. Please note that all of the symptoms, except for the loss of right arm swing and fatigue, were intermittent and would come and go in random fashion for various lengths of time usually during times of fatigue, stress or anger.
During this time my primary doctor retired, and my current primary doctor took over his practice. Because I had a long medical history, I wrote him a letter of introduction outlining all of my pre-surgery and current symptoms. This letter would prove to save my hide later. When I met my new primary for the first time, he stated that my previous doctor had told him that I was a “special case”. My retired primary always told me that along with my spinal problems, he believed another unrelated condition existed that would become more evident with time. The reason for the first visit with my new primary was because I thought that I had herniated another cervical disc. Immediately my new primary stated that it was probably a pinched nerve, prescribed Prednisone, and told me to come back in 30 days if I was still having problems. Thirty days later, I was back in his office. He agreed to order an MRI, and it absolutely showed a new herniated disc at the C5-6 level. He referred me to the Neurosurgeon, and at that visit, we agreed to hold off on surgery to see if it would improve on its own. The acute stage ended, but I was left with livable neck pain, occasional occipital headaches, and pain that radiated down my arm to my thumb and first finger. I still have not had that surgery, but I know I am getting closer to having no choice but to have it fixed.
In 2005, I had left knee arthroscopic surgery for Plica Syndrome and Arthritis. I also began having constant, severe lower back pain with radiation into the left leg. Additionally I began having new symptoms such as nighttime sweating, urinary frequency and hesitation, constipation, insomnia, and sporadic tremors. All of the other symptoms were still intermittent, except for right arm swing and fatigue, but they did seem to come more often. I did not pursue any answers at this point, because the pain caused by my back was becoming more than I could handle. It took nine months from the onset of the consistent back pain to finally having the fusions to fix the problems, during which time I continued to work while finally escalating to oral morphine to deal with the pain. I had the fusions of L4-5, L5-S1 in December 2005, four days before Christmas. I came through the surgery fine, but I had complications with my bowels 24 hours post surgery while still in the hospital. My bowels completely stopped working, so the morphine drip was discontinued, and the only thing they allowed me to take was Darvocet. My bowels did begin to work again a few days later (Christmas Eve), so I was released by my surgeon Christmas Night. (I now wonder if the bowels shut down because of the surgery or from the underlying undiagnosed Parkinsonism condition, which all can affect the gastrointestinal system)
This surgery also fixed the issues it was intended to fix. I spent through mid February 2006 recovering and returned to work. In April 2006, all my symptoms began showing up more frequently. By July 2006, I no longer could walk at normal speed, and my speech was very low, slow, and hesitant. I was much less animated when speaking which was evidenced by lack of associated hand gestures and movements while speaking. Additionally, my husband said that my face had no expression, and I rarely blinked. He mentioned Parkinson’s Disease at this time, because his mother had it before she died, and he recognized the symptoms. I told him he was crazy. The worse part was that people at work began to take notice. My standard answer to their questions was that I was just tired. I waited a full month before I would make an appointment to see my primary. I was hoping that everything would go away as it had in the past. The symptoms stayed. (Note: In June 2006, I had right arthroscopic knee surgery for Plica Syndrome and arthritis.)
In August 2006, I saw my primary doctor. He was shocked by what he saw. He immediately stated that he thought I must be bi-polar. Thank goodness my husband was with me, because I would not have been able to communicate well enough in that condition to deter my doctor from going down the mental health path. My husband told him that there was no way that I was bi-polar, depressed, or had any other mental illness. He explained that we had worked together for five years, and that at no time had he ever witnessed any signs or symptoms of mental health conditions. Then he told my doctor his opinion about Parkinson’s. He convinced my primary doctor to allow me to try the Sinemet, because it would not hurt me if I did not need it. He finally agreed. Within 30-40 minutes of taking that first pill, I was a new person. What bothered me though was that my doctor stated that I had never mentioned any of these symptoms before. During the visit, I did not put two and two together. Later that day I remembered the letter of introduction I had sent him back in 2004. I wrote a new letter detailing how well the Sinemet was working and that I expected to be referred to a Movement Disorder Specialist. I faxed this letter along with a copy of the 2004 letter to his office. Within an hour, I received a call from my doctor agreeing to send me to a Movement Disorder Specialist. From this point on the relationship between my primary doctor and I became a prime example of what the optimal doctor - patient relationship should be. It was at this time we began working as a team to find the answers I had been looking for with respect to my medical condition.
It took three months to get in to see the first Movement Disorder Specialist. He was not worth the wait. He diagnosed Restless Leg Syndrome and prescribed Requip to be taken before bed. He had me come back for a second appointment to evaluate me off Sinemet. At the second appointment, he had residents with him that he was instructing and seemed to pay more attention to them than to my decreased physical abilities. My husband was very angry. The Movement Disorder Specialist also appeared to take offense when we questioned him about statements he was making that were contrary to the information we had learned on our own about Parkinson’s Disease. One example of such false statements was when he stated that I was too young for Parkinson’s Disease, which is definitely not a factual statement. He even put this statement in his official write-up that was sent to my doctor. This Movement Disorder Specialist decided to send me out for an EMG to rule out a condition that had already been ruled out. (Myasthenia Gravis) We went to have the EMG, but we never returned to this Movement Disorder Specialist. During this time, I had arranged to concurrently see another Movement Disorder Specialist, which I paid for outside of my insurance. She was polite until she found out I was seeking a second opinion. When I named the first Movement Disorder Specialist, she stated that he was a great doctor, and she could not understand why we would question his opinion. She then said that she did not know what was wrong and could not help me. She promised to have her office call with information about UCLA, so that I could try there, but I never received any further follow-up.
In November of 2006, I decided that a Psychologist should evaluate me in order to establish that my symptoms were physical in nature rather than mental. By doing this, I would be able to absolutely refute any further opinions that might be given by other doctors that my physical symptoms were related to mental health issues. I saw this Psychologist weekly for almost three months. Additionally, he had me evaluated by the facility’s Psychiatrist. The timing was right, because he was able to see me both on medication and off medication, because I went off the medication in December. In mid-January, he decided that unless I really needed to talk to someone or I needed to talk to him in the future once I received a diagnosis; there was not any need for me to continue to see him. In his opinion, I had mild depression caused by the undiagnosed medical condition, but this depression was not the cause of the physical symptoms of the medical condition. He also diagnosed mild obsessive-compulsive disorder, which I already knew I had, that was not in need of treatment. Now, whenever I see a new doctor or one I currently see, I let them know about this evaluation and provide them with the contact information for the Psychologist should they like to confirm what I tell them. Not one doctor has requested any written information from the Psychologist, but it is a great comfort for me to know that the information is there if it is needed.
I decided to go off the Sinemet in December of 2006 to try to better my chances of getting a diagnosis. I went out on temporary disability. By the time I went back on the Sinemet at the end of January 2007, it was becoming apparent that I might not be able to return to work. I finally made the decision not to return to work in March of 2007, and my primary doctor supported that decision.
I asked my primary if I could see the neurologist who performed the EMG. Although he was not a Movement Disorder Specialist, he recognized immediately that I did not have Myasthenia Gravis, which is the condition that the first Movement Disorder Specialist was having me tested for. He said he thought I could be dealing with either Dopa-Responsive Dystonia or Young Onset Parkinson’s. He seemed excited about having me as a patient. I saw him three times, but on the third visit in June 2007, he stated that he just did not have enough experience to diagnose the condition
I had added an Agonist to my medication schedule in May 2007 due to end of dose return of symptoms and breakthrough symptoms, so during that final visit I asked if he could assist me with increasing the Agonist to the maximum level, so that I might be able to avoid having to increase the Sinemet. I did not want to increase the Sinemet, just in case I was really dealing with Parkinson’s Disease. He agreed, and he also added a Sinemet CR at night to help with symptom control at night. It is now clear that within the first year of taking the Sinemet, its benefits were not as strong as when I initially began taking it. To this date, even with adding the Mirapex, I still have breakthrough symptoms as well as end of dose return of symptoms. The Mirapex helped me to lengthen my dosages of Sinemet from every two and a half hours to every three hours, fifteen minutes. I will probably start taking it every three hours, because of the end of dose return of symptoms. It also prevented the symptoms from returning as quickly as they did when I was only taking Sinemet. The decline in physical ability at the end of a dose, or on those occasions where I forget to take the next dose, is much slower.
I came up with a creative method to find a new Movement Disorder Specialist. I sent out a mass email to approximately seven doctors, clinics, and large hospitals. This email consisted of a letter of introduction and two attachments, which outlined my symptoms, plus how these symptoms fit in with respect to Parkinson’s Disease and Dopa-Responsive Dystonia. This mass email method allowed me to see who was interested in having me as a patient based off response to this email. I surmised that if someone took the time to not only read the email and the attachments, but also responded positively to that email, then that was the doctor / facility that I wanted to be involved with. This method paid off, and a specialist who showed great interest in helping me find a diagnosis contacted me.
I met with the new Movement Disorder Specialist in July 2007, and that is when Parkinson’s-Plus came into the mix, specifically because of postural instability. The Dopa-Responsive Dystonia was ruled out completely. The Movement Disorder Specialist diagnosed Parkinsonism, and I will see her every three months, so that she can follow my progress. Therefore, here I am today trying to learn as much as I can about the PD-Plus conditions and waiting to see if I continue to progress as quickly as I have in this past year. The Movement Disorder Specialist requested that I have a sleep study done to rule out or confirm Narcolepsy and REM Behavior Sleep Disorder. I am presuming that she is also waiting to see if the new medication regimen that was established in June 2007 continues to benefit me or if the benefits decline within a short period. The latter would be a greater indication of a PD-Plus condition rather than Parkinson’s Disease.
Aside from all of the symptoms listed, I have had very sporadic periods of blood pressure issues, which looking back, actually predate the motor symptoms by several years. I now have a monitor, so that I can take my blood pressure if I begin to feel dizzy. I have found that I do have significant drops in blood pressure at times, which I will address at my next appointment. Prior to medication, this symptom existed, but I never paid much attention to it, because that symptom alone was not a major concern.
Additionally, when my medications wear off a deep, morose depressive mood comes upon me that does not exist when medications are working, nor did it exist prior to the onset of any symptoms. I also find that I tend to be more emotional than I have ever been in my life. My “normal” personality was to internalize whatever was bothering me, keep it to myself, find a solution, and deal with the issue. More often than not, now I am more likely to allow emotions to reach the surface and cry more freely.
More recently, I have noticed that I startle very easily. Loud noises, quick movements, or someone coming up quietly behind me, can cause me to react physically and verbally. One example just happened two days ago. I was sitting at the computer, and my husband made a noise from behind a nearby open door that leads to the backyard. The unexpected noise caused me to jerk my head to the left and gasp. As a result of turning my head so violently, I think I may have either pinched a nerve or herniated another cervical disc, because I have pain running down my left arm, new neck pain, and my two outer fingers on the left hand have been semi-numb since this occurred. Needless to say, my husband feels terrible.
So far, I am able to still drive, although I no longer drive during the night, because I am dangerous at night. I have a difficult time with adjusting to different lighting degrees that occur at night and have extreme difficulty distinguishing distance at night. If abnormal weather such as rain or fog is involved, it is completely impossible to drive at night. Normally I will only drive locally, although I feel comfortable driving longer distances, but only when my medications are at their optimum level. Losing my ability to drive completely is one of my biggest concerns.
Since July of 2006, I have lost over 30 pounds. Although I was never considered overweight, now I am considered underweight by a few pounds. I have recently changed the way I eat and have added additional calories in order to try to gain a few pounds. It seems like I will gain a few then lose a few with this new method of eating. I am just wondering if the difficulty in gaining weight can be attributed to extra calorie usage during the medication “off” times. I would imagine that more calories are burned if you have to fight your body in order to walk, speak, etc. Another possibility could be a slowed digestive track, because I often have to force myself to eat, because I often feel full several hours after a previous meal. The only benefit to this problem is that I am eating some favorite junk food right now that I have not had in my diet for years.
Finally, medication effectiveness seems to be tied to many factors. The more physical activity I do, which isn’t ever much more than sitting in my garden pulling weeds or planting new flowers, affects how well the Sinemet works. On the rare occasions that I may do something excessively physical, such as walking for extended periods, too much housework in one day, etc., I may have to take an additional Sinemet to counteract the affected dose. Lack of sleep or extreme fatigue can make the Sinemet seem less effective. I limit my protein to the evenings, because the protein definitely affects the Sinemet. I have read that these variations in medication effectiveness are normal, but they are disconcerting nonetheless.
Upon doing multiple hours of research, I have subsequently learned that sleep disorders are common in both Parkinson’s Disease and Parkinson-Plus Disorders and can predate symptom onset by several years. Narcolepsy, REM Behavior Sleep Disorder, and Insomnia are the three main disorders associated with these conditions. I have had symptoms of Narcolepsy and REM Behavior Sleep Disorder for many years, and I have developed Insomnia within the last 3 years. It will be interesting to see what the results are from the Sleep Study Test.
Beyond any of the symptoms, the speech issues bother me the most. I enjoy having conversations with people, and I am most frustrated when the speech issues interfere with communication.