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Found 10 results

  1. Last Friday, I finished the five-day inpatient portion of a Phase 1 clinical trial for BIIB054, an immunotherapy treatment for PD being tested for the pharmaceutical company Biogen. Details of the trial (still recruiting at some locations, I believe) are here: https://clinicaltrials.gov/ct2/show/NCT02459886 Overall, the experience of participating in the trial has been very worthwhile. As the saying goes, there were stretches of boredom punctuated by brief moments of--okay, certainly not terror--but heightened anxiety. To prepare for the trial, I was required to stop some medications, and undergo blood and urine tests, an EKG, an MRI, and a DaTScan. Blood, urine, EKG, and MRI were to confirm good health (apart from PD); the DaTScan confirmed my dx. Cost of all testing (including DaTScan) was covered. Infusion of the study drug was done during a five-day, four-night inpatient stay in a research clinic. The study drug (or placebo) had already been administered in higher doses to 40 volunteers without PD, and a handful of volunteers with PD, with no significant side effects. My MDS is one of the study doctors--I felt the potential benefits for research and for myself outweighed the modest risks. I was well compensated for travel and time, and the catered meals were *far* better than hospital food. Day 1 was a battery of blood and urine panels, plus multiple EKGs, blood pressure readings lying down and standing up, MDS exams, and collection of cerebral spinal fluid via lumbar puncture (spinal tap). I was more than a little nervous about the spinal tap, but it turned out to be much less of a big deal than I imagined. Very little pain (just a little poke from the lidocaine injection, and a bit of pressure when the needle went it). After that, I was hooked up to radio telemetry to continuously monitor heart rate for the next 48, and spent the next several hours in the clinic's waiting room. By the evening, when we moved to the clinic annex where the bedrooms were located, I had a fair amount of discomfort in my lower back. This may have been a reaction to the lidocaine. I was given ibuprofen, which provided good relief, and was fine the next morning. There was another volunteer participating in the trial at the same time--that, plus books and internet, was a good distraction from a whole lot of sitting around waiting for the next blood draw, the next EKG, etc. Day 2 was infusion of the study drug (2/3 chance, two possible doses) or placebo (1/3 chance). Infusion was via IV and took about an hour. Some combination of fasting, lying flat on my back for an hour and who-knows-what caused pretty bad heartburn during the last 15 minutes of the the procedure. When I mentioned this, I was given immediate EKG and had blood pressure checked to rule out possible complications. For the rest of the day, we had regular blood draws to monitor the drug as it moved toward and crossed the blood-brain barrier. Day 3 was more of the same. The telemetry came off, and by afternoon, we were given the chance to take a shower and get out of the clinic for a few hours. I met up with a friend in the area and we went for a hike in a nearby park. Good to move the legs after 2 1/2 days sitting. Day 4 was another MRI in the morning, more routine blood draws and EKGs, plus another afternoon release (for good behavior?) On Day 5, when the results from the MRI came back, we had final MDS exams, and were released. There will be a series of followups over the next 16 weeks, including two more spinal taps and another MRI. I was told BIIB054 isn't expected to offer symptomatic benefits, but may (if it works, and if I got the active drug) slow progression by 4-5 times the rate without the drug. As I understand it, the drug is an antibody engineered to bind with the clumping form of alpha-synuclein, and clear it from the brain. The 'moonshot' (as my MDS put it), is that the drug will prevent the formation of Lewy bodies, and even reverse some disease progression. Needless to say, everyone at the clinic is very excited about this trial (and very appreciative of the patient volunteers). Given the lack of negative side effects, a Phase 2 trial is expected very soon (perhaps this fall), and it appears Phase 1 patients will also be eligible for Phase 2. I don't know if Phase 2 testing will be as invasive or require an inpatient stay. We often hear that new drugs take a very long time to pass human trials and get released to market--what I heard from clinic researchers was that with good recruitment and positive results, new drugs can be released quite quickly, perhaps 4 years or less from initial human testing. I feel fortunate to have an MDS committed to active research as well as top-notch patient care, and clinical research facilities located relatively close by. In fact, my MDS will be conducting Phase 2 trials of the drug Nilotinib soon. I don't know if I'll qualify, but it's exciting having cutting-edge stuff happening so close to home. Finally. a little soapbox: with a number of promising PD treatments in the pipeline, this is an excellent time for PWPs to get serious about research, by volunteering for trials (not for everyone, I know), and/or by contributing to organizations that support research (like the Fox Foundation), and advocating for increased support and funding for basic research through NIH and NSF. The basic research underlying all these new treatment has been twenty years or so in the making--too long a horizon to payback to expect private companies to do it alone.
  2. Scientific discovery may change treatment of Parkinson Date: March 22, 2017 Source: Turun yliopisto (University of Turku) Summary: When monitoring Parkinson's disease, SPECT imaging of the brain is used for acquiring information on the dopamine activity. A new study shows that the dopamine activity observed in SPECT imaging does not reflect the number of dopamine neurons in the substantia nigra, as previously assumed.
  3. Scientific discovery may change treatment of Parkinson Date: March 22, 2017 Source: Turun yliopisto (University of Turku) Summary: When monitoring Parkinson's disease, SPECT imaging of the brain is used for acquiring information on the dopamine activity. A new study shows that the dopamine activity observed in SPECT imaging does not reflect the number of dopamine neurons in the substantia nigra, as previously assumed. full article https://www.sciencedaily.com/releases/2017/03/170322094512.htm Mapping the future of precision medicine in Parkinson's disease Date: March 22, 2017 Source: University of Cincinnati Academic Health Center Summary: A new transformative approach to defining, studying and treating Parkinson's disease has been revealed by investigators. Rather than approaching Parkinson's disease as a single entity, the international cadre of researchers advocates targeting therapies to distinct 'nodes or clusters' of patients based on specific symptoms or molecular features of their disease. full https://www.sciencedaily.com/releases/2017/03/170322143129.htm
  4. Kevin Noll

    How reliable are DaTscan?

    I have always had tremors and age 50 they have became worse. Every Neurologist I have ever went to said that I did not have Parkinson's. I found out the DaTscan and I convinced my Neurologist to give me a script. I got the insurance approval and got it done. The doctor read the scan as follows: Clinical Information: This patient is a 50--year-old male who has the diagnosis of tremor and a DaTscan was ordered to help differentiate between a parkinsonian syndrome and an essential tremor. He has had tremors, mainly of the upper extremities, which have become worse over the last year, with the tremor more intense in the left hand than in the right hand. The DaTscan protocol was followed. The patient was given a 100 mg iodine p.o. in the form of KI and 1 hour later received DaTscan intravenously in an arm vein. the tracer was flushed with normal saline. Four hours later SPECT imaging of the brain was done. Tomographic slices of the brain were reviewed.​ Images of the striatum are abnormal, as follows. The striatum normally has a coma shape on both the left and right (normal tracer uptake in the caudate and in the putamen). However in this patient there is decreased intensity of the tracer in the posterior part of the comma bilaterally , and there is asymmetry with the head of the comma less intense on the right than on the left. Impression: ​1) Abnormal DaTscan. There is abnormal tracer uptake in the striatum which suggest that the patient's tremor is due to a parkinsonian syndrome rather than due essential tremor. When I spoke with my Neurologist she spoke of a false positive reading and she thought I still do not have Parkinson's. Are there false positives with the DaTscan and if so what would be another test. Thanks Kevin Noll
  5. adams234

    To change or not to change?

    After I was diagnosed by a very good neurologist with PD he suggested that I contact the University of Rochester and see an MDS. He thought that they might want to get me into a study because of my young age. I agreed and he sent over all of his finding. Two months later I had the MDS appointment. I filled out an hours’ worth of paper work with my history and symptoms. Once I was sitting with first neurologist he had me verbally give my history while he typed it in his computer. This took about an hour. At one point I had to refer back to the paperwork I had filled out so I did not miss anything. After that was done he performed his examination. This took about 20mins. Tested movement walk up and down the hall, hit all the reflexes, and all the stuff. Never once did I see him record any results. After the exam he said he would talk to the MDS and they would both return. Half an hour passes and the 2 doctors now come into the room. The MDS starts talking to my husband tell him all that she thinks is going on. Finally I asked some questions and that was the first time she spoke to me. She had me tap my foot and my hand on my leg. That was the extent of her exam. She recommended that I get a DaTScan to see if they can confirm Parkinson’s because I of my age. So here’s where I need some advice from the more seasoned people here. I just did not get a very good feeling with this MDS. I did not like that she never talked to me and only looked at my husband. She spent all of 10 mins with me and could not explain what a DaTScan does or what it involves to have one. Since this appointment I have been think I should see another MDS in this center. There are 3 more MDS doctors who have way more experience with PD out of this office and they are national names. One of them was on the board of MJF foundation for years. What would you do? Would you change docs or stick it out and see what the current MDS has to say at the follow up? Thanks Adam
  6. Curt Bates

    More Questions than answers

    Wow! This is an awesome place for knowledge and support! I am new to the neighborhood and like so many of you have more questions than answers! I think that talking to people that have PD is the best source to find out answers. My story: I am a 43 year old, small business owner (ACE hardware), suffer from hypothyroidsm for 31 years, and otherwise in decent health. Over a year ago I began having trouble swallowing and brushing my teeth. I couldn't spit the toothpaste out without it going all over me. I, for whatever reason, chalked it up to stress. The problem presisted but wasn't high on my priority list as it didn't happen everyday. I also begin to notice that I couldnt print anything legible. I could write it, but it was super small and jumbled up. I just figured that since I use the keyboard for all correspondence I had gotten out of practice. Dumb, I know but I was struggling to understand. About six months ago, I began slurring my words and having real difficulty speaking. Not all the time, just very sporadic. I also developed a twitch in my right pinky finger and my right leg has always "bounced" when I was resting ( my wife always said this was due to my hyperness). I begin to have more concern as to the cause of the tremors and if the other "weird things" were related. This is where the path begins. I saw GP who ordered an MRI, which proved to be negative. I was referred to a neuro for initial examination. She performed the typical examinations (i.e. spiral test, walking, balance, etc.). Upon conclusion of tests, she told me I didn't swing my right arm when I walked. I, nor my wife had ever noticed that little detail! I asked what that meant and what she thought might be wrong with me. She suspects PD but refferred me to a movement specialist because of my age and ordered a datScan. The frustration begins here. Insurane will not approve the datScan until I see a movement specialist. The earliest I can see a MDS is 4 months away. UGH! The frustration is terrible! I have read so many of your stories that have similar characteristics to mine. I am fine with a dx of PD but I am worried that waiting so long to begin meds will speed up the disease. I know that doesnt really make sense but it is a concern. I know that waiting patiently is something everyone has to do, but when you are the one waiting, it is hard! My questions would be: 1) Is the delay to seeing a MDS going to speed the disease along? 2) Are my symptoms characteristic of other PD patients? Like I said, if this is PD, I am fine with it, I am just ready to start finding my way down my new path of LIFE! Thanks for listening and I pray nothing but peace for all of you!
  7. Hello Dr. Okun, I have read several studies on PubMed indicating that REM Sleep Behavior Disorder is now considered a precursor to the alpha synucleinopathies such as Parkinson's disease, Dementia with Lewy Bodies, and Multiple System Atrophy. In fact, one study indicated that some symptoms in addition to REM Sleep Behavior Disorder such as loss of smell, autonomic symptoms, and motor symptoms can precede the diagnosis by several years. I am a 58 year old female with left hand thumb and index finger tremors at rest and positional, progressive right-sided cogwheel rigidity in my arm and leg, balance issues, and acting out dreams. I have been awakened by wild flailing of my arms on occasion. My husband tells me my legs kick and jerk frequently, enough to wake him up at times. My symptoms started 3 years ago with the tremors and have steadily increased since then. I also had a normal datscan x 2. These are my questions: 1) Could some cases of Parkinson's disease be caused by a deterioration in a part of the brain other than the substantia nigra with its loss of dopamine producing cells? 2) Is it possible that a person with tremors, cogwheel rigidity, balance issues, and acting out dreams could be in a prodromal period that has yet to show on a Datscan? 3) Any other thoughts? I will see my MDS in a few months and ask him if he thinks a Sleep study would be a good idea. As always, I am grateful for your thoughtful response! ~ Catty1
  8. Hi, I'm new here. I'm a 35 yr d female. I was referred to a Neuro because my primary dr suspected early-onset PD because of a resting tremor, very stiff neck, and 17 yrs of being involved in Boxing. Neuro only tested reflexes and made me follow her finger and said she suspects essential tremor but to eliminate my fear, sent me fora datscan. I haven't spoke with her about results but they sent them to my primary and he said the report said there wasn't a significant loss of dopamine and essential is suspected but he feels the Neuro has to take a look again at my tremor and come up with other tests or something. It's a significant pi rolling tremor that favors PD that occurs only at rest. I'm not sure what to think now. It started with twitching and shaking when gripping a curling iron but that stopped and now only tremors on my right hand and the corners of my mouth tremor when lifted. Can someone give me insight? I'm confused and apparently the doctors don't seem to agree.... Any insight is appreciated!
  9. loustalet

    DaTScan and/vs TRODAT

    My wife was diagnosed with Parkinson 7 years ago and her condition is getting worse. In fact her neurologist recognizes that her parkinson is "atypic". She was subjected to a DaTScan in Paris in 2008 at Hopital Salpetriere. They recognized that the diagnostic was a bit difficult. 6 years later we are in Lebanon where they just starting practicing DaTScan with a technetium isotope and the name of the technique is TRODAT. It is much cheaper than the classical DatScan. It is operated by a specialist just arriving from the US where he claims that he has had 200 tests done. My neurologist is still a bit worried. We could either do a TRODAT in Beirut or go back to Paris to do again the same DatScan with iodium 123 (I guess), the purpose being to validate/invalidate the diagnosis. My questions: 1. Is the TRODAT technique well accepted? Does it give results similar to the classical DatScan. If not whare are the difference? 2. Can we trust the quality of the product? It is used nearly exclusively in Asia now but I am not sure the quality control of the product is at the standard we have in the US or in Europe. 3. Will we be indeed capable of making a refined diagnostic and possibly adapt the medicine she takes every day with some side effects. Sorry for this long mail. Important to me.
  10. revillapatient

    Diag 2 yrs ago, off all meds then back on

    Thanks for any help. I was diagnosed 2 yrs ago (symptoms felt ill when stirring or washing hair, slight stoop & shuffle when walking) and put on Sinemet. But also had uncontrolled blood pressure (at times 220/110 others 80/40). After a year of Sinemet, increasing cognitive issues, a nephrectomy to try & control bp (didn't work, thx for that surgery!) I was taken off all meds. Shuffling gait, small handwriting, exhaustion, slight confusion (specifically @ times I duplicate my daughter into being 2 people, not seeing 2 just attributing something my daughter has done for me to the "other" Jane) all present without meds but my blood pressure settled down to range of 200/100 to 100/60. I had a Datscan which showed grade 3 dopamine depletion so I was started back on Sinemet titrated up to 1 25/100 3x + lodosyn 3x a day. Although gait & other motor skills improved markedly, my confusion of duplicating my daughter & sometimes son-in-law really got more frequent and I'm told harder to get under control (before even when asking about the "other" Jane I would say I know there's only 1) and my blood pressure fluctuations highs got higher and lows got lower. I've reduced back down to 1 sinemet + 1 lodosyn in am, 1/2 sinemet + 1 lodosyn in early afternoon and then again late afternoon. Brain seems some better. But I'm waking up w/ high blood pressure, dropping really low after morning dose (haven't tried skipping dose to see if I still drop) and then various readings during day. 1 ) Anyone else duplicating a loved one? Is it due to Parkinsonism or something else? 2) What about BP drops? 3)Should I split morning Sinemet in half? 4) What about the adding of lodosyn? Everything I read is that there are no side effects of Lodosyn, it was added for me in hopes of better absorption/less levodopa to avoid bp drops. But down to 80/40 seems like maybe drs don't have the bp drop quite figured out. 5) Anyone else have Parkinsonism and Autonomic nerve disorder? BTW - Finally getting to the diagnosis of Autonomic nerve disorder + Parkinsonism took 3 hospital stays of 10 days each with the final @ Cleveland Clinic. And I feel exactly the same (minus the weight of that atrophic kidney) than I did when I started 26 months ago. And my daughter has helped m write this. Again, thanks for any help.