Not yet diagnosed
Posted 12 April 2012 - 01:14 PM
I'm not sure if at my age that I would be considered having YOPD, but until this past year I was in much better shape then I was when I was in high school and college.
My name is Lauren (44 year old female) and was told by neurologist that I may have PD. I made an appointment with a MDS, but that is not until September. Yes that is right September, 5 months from now. I'm going crazy right now. Since it is so long before my appointment with the MDS, I made an appointment with another neurologist to get a 2nd opinion of the possible diagnosis.
Here is some of my history:
I started noticing my left foot turning out when walking/running a year ago. It wasn't too bad at the time. I was able to train and compete in a 5K at the beginning of June without too much trouble. During the summer, my foot continued to turn out, so I would rest it and it would seem better. But a few days later it would start up. It really only "acts" up when I'm working out, not every time, but a lot of the times.
Finally in October, it got so bad (I couldn't run 0.1 of a mile), I made an appointment with my PCP. Upon examination, he said that my foot was dropping and referred me to a neurologist. He also sent me for x-rays to rule out a stress fracture. The x-rays came back negative.
I was able to get into see the neurologist right away. He put me through a complete exam. He noted that my left leg was somewhat weaker than my right. He sent me for blood tests and an MRI (with and without contrast) of the thoracic spine.
The blood tests came back negative, but the MRI was inconclusive, so I was sent for another MRI, but this time on the head. This MRI came back negative and was sent for a 3rd MRI for the cervical spine.
After the results of the 3rd MRI came back, he had me come into his office to go over the results. He said that I had a herniated disc in my neck. He has not convinced that this was causing the foot drop. I was scheduled for a SSEP test and was sent to PT.
I went to PT for about 6 weeks and it did seem to help with the foot drop. Around this time,I started to notice some weakness in my left arm.
When the results of SSEP came back, I again went to see the neurologist. The SSEP test also came back negative. Since the PT seemed to be helping, we decided to do nothing more and I scheduled a follow up for July.
During this time Oct - Dec, I almost completely stopped working out, except for my PT exercises. Once Jan hit, I decided that I should start working out again. Within a couple of weeks, I started noticing my foot dropping again during my workouts. I also noticed that when lifting weights, my left arm fatigued well before my right. This continued on until March. I called my neurologist again to set up another appointment.
At this appointment, he put me through another complete exam. He watched me walk and could see my foot dropping and also noticed my left arm swing was not as big as my right. He thought that the herniated disc in my neck had gotten worse, so I was sent for my 4th MRI, to recheck the cervical spine.
As soon as those results came it, he saw me in his office. The MRI showed that the herniated disc was much better. He said that he was baffled and started to go over my case notes again. The one thing that stood out to him was the "stiffness" on my left side (both leg and arm). That is when he dropped the possible PD diagnosis on me.
I have been trying to keep track of what I call episodes and it does feel like my ankle is freezing up. For example, last night I went for a walk. After about 3 minutes, the episode started. I felt like I could not move my ankle. This lasted for about 15 minutes and then I was able to walk normally.
There are times when I "know" that the neurologist is completely off his rocker and then times when I "know" he is 100% correct. His possible PD diagnosis came out of left field. I had done a ton of research on the web and PD never came into my radar.
Posted 12 April 2012 - 01:42 PM
Good luck with the MDS (although the neurologist should be able to make the call).
PS - at 44 you would be in the YOPD crowd. Most of us old dogs were 60+
Posted 12 April 2012 - 02:12 PM
Posted 12 April 2012 - 06:35 PM
I was diagnosed, undiagnosed, then finally diagnosed with PD after 20 years of symptoms that no doctor ever put together until my family noticed my movements were slow, I couldn't cut my food well, and I sat around with my mouth open all the time, kind of slumped. My daughter thought it was PD while my PCP was telling me my tremor was from too much thyroid medicine. Whatever it turns out to be, there will be support here for you.
Just for myself, and only on days where I feel emotionally strong, I follow the following rule: If there is nothing I can do about it between now and bedtime, I am not allowed to worry about it.
Has your neurologist tried you on a trial of carbidopa-levodopa (Sinemet)? If you get better while on the meds, it is more likely to be PD. A DaTSCAN will tell if you have lost dopamine, but most people don't need one to be diagnosed.
I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.
First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.
Diagnosed December 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.
Current medications at age 63: Duopa gel via PEG-J tube, 6ml loading dose; continuous dose 2 ml. Trazodone 150 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 135 caregiver hours per month keep me moving.
Posted 14 April 2012 - 07:53 AM
As others have said here, PD takes on a different look with everyone. It took a long time (two years) and many tests for my doctors to come to a diagnosis. For others it has taken much longer. At first I was very frustrated that they couldn't just "figure it out already", but as time went on, I realized that they were doing what they've been trained to do, and that is to look at everything and make sure they find the true cause for my symptoms. This is not to say I didn't continue to be frustrated waiting for a conclusion, but I stopped blaming the doctors for the time it was taking. I am 47 and was just diagnosed about a month ago.
I hope that you will find an answer soon. If it is PD, it is not the end of the world, and there are very good medications and treatments available. This is a great forum and a place where you can get perspectives and unbelievable support from many people who have gone through what you're going through. Browse the Open Forum and the Ask the Doctor forums as well. They can be very informative as well.
Best wishes to you!
Posted 14 April 2012 - 11:45 PM
Posted 18 April 2012 - 10:59 AM
I have somewhat good news, the MDS has some cancellations and my appointment is now in July instead of September. They are keeping me on the waiting list in case any other cancellations occur for an appointment even sooner.
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