Ugh...

[Bonnie51462]

I was diagnosed about eight years ago and given carba dopa leva dopa I have been on a very low dose this whole time without any increased meds now a new neurologist stepped in when my old one retired and now she wanted me off of my meds which has kept my tremors under control so I weaned myself off because she diagnosed me with essential tremors... Ok I slowly went down to 1/2 pill in the morning and 1/2 a pill at night as per my pharmacist's help (the doctor was no help in explaining just told me she wanted me off because I had no noticeable resting tremor) I told her I felt internal tremors all the time but she's a doctor not me according to her...Ok so I saw her two months still weaning myself off and I could no longer feed myself or walk decently my voice tempted and I couldn't stop tremoring...Now she said that she still doesn't believe I have Parkinson's BUT when I went back to my previous dose I'm back to normal... I am trying to see another neuro but keep getting the run around... My GP said she damn well knows I have PD because he saw the decline first hand as he became concerned when I came into the office for a blood test and the nurse went and got him as she knows Mr from years of going there.. He changed my diagnosis back to Parkinson's and is trying to help me find another neuro... Aren't they supposed to help??? I read the literature on my med and essential tremors can't be stopped by it... Why would she put me through all of this??

[Esperanto]

Contrary to what many people think, including doctors, you can develop rest tremor in addition to essential tremor with PD. This is the reason PD is often seen far too late or even never by GPs because the essential tremor is so convincingly present. Initially, my neurologist assumed this too, but when I concentrated on a writing exercise with the right hand, he noticed that with my left hand at rest, the index finger made a small movement. Incredibly, something so small marked the beginning of such a different life and I am now responding to a post on HU….

The internet fuels the misconception and almost everywhere confirms that someone with essential tremor cannot have PD. Yet with some searching, you come across studies to the contrary. Interesting is a 2012 study by Thenganatt and Louis.   “Distinguishing essential tremor from Parkinson’s disease: bedside tests and laboratory evaluations.”

Various tremor types (rest, postural, kinetic and intention) may be seen in both essential tremor and Parkinson’s disease. Furthermore, with time, the two diseases may coexist within a single patient

Some key issues:

Rest tremor may be seen in as many as 20–30% of patients with essential tremor (ET), although it tends to occur in patients with more severe disease and longer disease duration.

Action tremor can be seen in patients with ET and patients with Parkinson’s disease (PD). Kinetic tremor tends to be of greater amplitude than postural tremor in ET. Postural tremor similar in frequency to a 4–6-Hz rest tremor is suggestive of PD. A postural tremor with a significant latency upon assuming an outstretched position (re-emergent tremor) is suggestive of PD.

Head tremor often occurs in ET but has also been described on occasion in PD, where it persists at rest. Jaw tremor may occur in ET or PD; jaw tremor in ET is more typically a postural or kinetic tremor rather than a rest tremor.

Bradykinesia has been described in patients with ET; however, decrementing amplitude and freezing as seen in PD has not been described in ET.

As clinical features evolve, the diagnosis may need to be altered, as there may be a coexisting diagnosis of PD and ET within the same patient.

Neurophysiology involving accelerometry, surface electromyography and spiral analysis can provide objective measures of tremor with certain patterns suggestive of ET versus PD.

Dopamine transporter imaging may help distinguish between PD and ET, but this imaging modality has its diagnostic limitations.

ncbi.nlm.nih.gov/pmc/articl...

Perhaps there are other more recent publications?

🍀

[caitilin]

Oh no… Bonnie, I’m sorry you had to endure the trauma brought about by the ignorance and arrogance of an individual who has so much power over others. Fortunately you’re able to get help from your primary doctor. Here’s hoping you’re able to regulate tremors quickly with assistance from the other providers on your team. 🥺

[eaglet in reply to caitilin]

Please look for a moment disorder specialist

[johntPM]

Bonnie51462,

I am not a doctor, just someone with PD. I can only reply taking into account the information that you provide. It seems to me that the salient issues are that you were doing well on C/L, but can't feed yourself or walk "decently" without it, and that the first doctor put you on C/L. Everything else being equal this obviously begs the reply that you should take C/L. So, the interesting question is why is the new doctor taking this seeminly wrong course?

John

[pvw2]

Sounds like the neurologist thought you didn't have PD because your PD wasn't progressing. However, when you stopped taking meds, it showed that it was progressing slowly. PD that starts with tremors rather than stiffness tends to progress more slowly. I have a neurologist who specializes in PD. That's your best choice. We discuss the latest developments. He encourages exercise because it slows the progression. He also says antioxidants are good because they help you feel better. He mentions that he has a patient that eats fava beans as her only medication, but he does prescribe medications. He listens to the most minute detail of PD because that is his main interest, to understand PD completely for every patient.

[Bolt_Upright]

So sorry you are going through this Bonnie. One thing I learned when I had AFIB is we are the bosses of ourselves. I had a doctor that told me my AFIB could not be fixed. I fired him and found a better doctor and got my AFIB fixed.

I have a HS degree, but it seems to me that if a doctor mismanaged me and disrespected me like this neurologist did you, I would not tell them they were fired, but they would be dead to me and I would rely on my GP until I found another neurologist.

Good luck and may God bless you.

[MBAnderson]

Being a doctor doesn't mean you can't also be an *sshole.

[park_bear]

If your GP is willing to prescribe your PD meds you don't need a neuro.

Some are good but others are horror stories like you describe.

[Bonnie51462]

Thank you all I have read my medication doesn't help essential tremors which is why being back on them helps the diagnosis of PD.. I have arthritis since birth (diagnosed at five ) I'm wondering if the stiffness from it masks so much of my PD symptoms as some overlap I'm looking into a movement specialist to help me right now I use a mobility scooter to go shopping and out in general I refuse to stop going I also know music helps my walking at home I listen to just about anything from Bach to Sam Smith and beyond... I know I have Parkinson's it just upset me that she thought because I'm not a mess and bed bound I must not have it... I push myself most days to doing something even if its just taking a shower I refuse to just let Parkinson's and arthritis steal my joy...

[ddmagee1 in reply to Bonnie51462]

Good for you Bonnie51462! I can so relate to your tale of such frustration, dealing with a neurologist! I have severe osteoarthritis, along with neurological problems. Not all neurologists are created equal, is what I found out! Thank goodness you have a primary Doc that believes in you, and knows your problems! I have been diagnosed with PD, by three Docs - my family Doc. who referred me to a neurologist, who tested me and formally diagnosed me. Another Doc. agreed with these 2 Docs. It took years before I was diagnosed, which was 6 years ago! Anyway, what I wanted to say, is that I had years of essential tremor, before I got resting tremor, in my left hand. I had many other symptoms, starting with tasting problems, balance, freezing and slowness rigidity. I had PD symptoms for at least 7 years, before I was diagnosed! It is unfortunate that you have had to go through this! All the neurologists I’ve talked to state that one of the diagnostic tests, for PD, is if symptoms improve when carb/levodopa is taken, then it is likely diagnostic, for PD! If the resting tremor, rigidity, stiffness etc. improve then that is diagnostic. You stated your symptoms improved. With my swallowing problems, and mobility difficulties, not taking carb/levodopa , would put me in serious trouble! I fail to understand how your new neurologist cannot see how you taking carb-levodopa improves your ability to eat etc., and then takes you off carb/levodopa! I would recommend you ask your primary Doc. to refer you to a movement disorders specialist A. S. A. P. Years ago I had mild Ataxia/Cerebellar symptoms. Balance was a problem for me. My good primary Doc. referred me to a neurologist, who did little to examine me, and stated that my problems were because of leg varicose veins. I am not medically trained, but, even I could not see a connection between balance and varicose vein problems! So, my primary care Doc referred me to a top, well respected neurologist, at a major well qualified medical center, in the city, where I lived! This neurologist went over me, from head to toe, about sensory issues, and then balance tests, and brain scans etc. She came up with possible Multiple Sclerosis. This was before MRI machines were available. A couple years later, when my symptoms advanced more, where my coordination and balance became more pronounced, my neurologist, who is a very caring and meticulous person, with an outstanding reputation, had me admitted to hospital, and gave me an MRI test on their new MRI machine, along with an EEG, and the MRI showed something at the cranial nerve root entrance, to my cerebellum. I was referred to a top notch neurosurgeon, trained at Harvard Medical School, and, at the time, chief of Neurosurgery at Case Western Reserve University, in Cleveland, Ohio. The neurosurgeon told me that it looked like I had a brain tumor, at that junction, of the Cerebellum, so he ordered a brain test, where they thread a tiny tube, through my arteries up to and in the brain, to check and see what was going on, and so I had that done (arteriogram). It revealed an artery malformation that was pressing in on my cerebellum, causing my symptoms. Furthermore, it had attached itself to my brainstem. Operations in that area of the brain, are dicey! As Dr. White, the neurosurgeon told me, they could operate, even though it would be tricky, and the operation could go fine, but there would be no guarantee, that I would regain consciousness, because the consciousness center is in the pons/mid brain area, right near the operating field. Dr. White decided not to operate, and, instead he put me on two blood pressure medicines, that lower my heart rate, and keep my blood pressure low! That was nearly 40 years ago, and I’m still here, at 76. So, anyway, I’m hoping my story will encourage you to pursue getting a referral to a well qualified, highly recommended movement disorders specialist who can analyze your symptoms, and come up with the correct diagnosis, and treatment! Sometimes, diagnosing PD can be incredibly difficult, for neurologists. It takes persistence, on the part of a patient, also, sometimes, to get the right physician and treatment! Wishing you the best!

[curlscurls]

If she is part of a hospital system, or an office, I would consider reporting her. Meaning, telling somebody higher up what your experiences have been. She's dangerous.

I've read so many articles and sites that mention that you can have both essential & PD at the same time.

My only hope is that when I get there, the frequencies cancel each other out 🙂 (just joking).

From what I've seen one of the ways of determining whether you have PD, is if the medication helps. You were stable, and she destabilized you. And she didn't even learn from that. Usually the next step I find is that the doctor starts blaming you in some way.

[Boscoejean in reply to curlscurls]

for a long time we thought my husband had essential tremor because his tremors did seem like essential tremor and a neurologist was not even sure if he had essential tremor or Parkinson's in 2017 but then he developed resting tremor in his left hand while his right hand is still more like essential tremor in that it is more tremor with use and not at rest

[Bonnie51462 in reply to curlscurls]

Its funny you mentioned reporting her as my GP had mentioned it and said he'd back me up on that... My old Neuro diagnosed me by giving me carb/leva and when my tremors stopped (other than internal ones) he diagnosed me, I'm grateful for your humor it gets us through the days... I used to tease my kids when my tremors started that they didn't need to go to McDonald's for their milkshakes just hand me some ice cream and milk 😂

[curlscurls in reply to Bonnie51462]

Lol, yes I'm much better at shaking containers of dairy-free cream these days.

[Veravrida]

Hi Bonnie, I have been diagnosed with PD 4 years ago. It took as many years, 4 years, to get this diagnose. First sympoms were tremors on the left arm and internal tremor. I was 49. First the doctors told me it was my hart, lack of vitamine D, stress, epilepsy, artoses, and then it was PD, yet another neurologist said it wasn't befor he changes his mind and told me it was. He prescribed pills and after every test even more pills. I had what they call a Parkinson plus. He told me there was nothing he could do to help me. Et voila, that was that. I did not believe him. I searched for as much as possible for information about my symptoms. Finally I decided to listen to my body and asked myself how did I get there, helped by a natural therapist. You must take back control over your body and do what you believe feels good for you. Search for people who really listen to you. Now after four years I am rather feeling well, I take only half the meds I used to. I practice yoga and qigong to reduce stress and learn how to meditate to improve my breathing, and read book about how you can heal yourself. I am sleeping well now, feeling much calmer and positive about life. I still have a long way to go but that doesn't matter. I hope you find your way as well. Never give up, life can be beautifull, even with PD.

[Windermere1]

we are on our own really doing our own research. I found the group Parkinson’s b1 therapy and read Daphne Bryan’s book. It’s worked miracles for me but my neurologist knows nothing about the b1 protocol

[tandolino]

Windermere1 you are correct. We are on our own, I have seen 7 different Neurologist, the last two were movement disorder Specialist in big cities. andI got the most help by reading and rereading" The New Parkinson's Disease Treatment Book." Written by Dr Ahlskog who is a practicing Neurologist for over 30 years at the Mayo Clinic. If you want to be in more control of your Parkinson's treatment, this book will help you, you will be able to tell if the Neurologist you are seeing is in line with Dr Ahlskog and if your Dr is going in a different direction then you can ask questions and then determine what to do.

One thing I learned is that it is pointless to take C/L pills in a lower dose than what is required to get you in an "on state". My current MDS advised me to take 2.5 pills every other dose. and take only 2 in between. I followed these instructions and after a month , it was confirmed to me that Dr. Ahlskog was correct. Most of the 7 Neurologist prescribed bigger doses during the day and small dose at night and I suffered with being in off state at night.

Again, I encourage you all to read this book to put yourself on a more equal footing with your Dr. I am not saying that Dr Ahlskog has all the answers, but having read this book a few times, I think I know more about PD than some of the 7 neuro's that I have seen.

I wish you all the very best.

[Bonnie51462 in reply to tandolino]

I know I have several conditions including a congenital heart defect that was supposed to be nothing to worry about only to find out mine was it became congestive heart failure and I have something called long QT syndrome... I will read the book you recommended because it helps to stay informed I believe to be honest I have a slow progression on my PD but I wonder if my arthritis hides some symptoms because both gives you stiffness and takes mobility away as well as pain etc... I feel like I'm fighting the same battle but basically have two foes that teamed up on me... Thanks for your response

[HekateMoon]

Hi Bonnie.Sorry you had to endure so much trauma just to prove your reality to someone who wouldnt allow himself to be wrong.

I had to pay a new neurologist online to be diagnosed as my first neuro insisted that i had nothing and it was all anxiety.

Now after a Dat scan its clear that i have loss of dopamine.

I had to insist with my gp that i wouldn't see my first neuro any more since i was wrongly dismissed. It took three years but i now have a neuro whom i trust and trust me.

It is crucial that we feel safe with our care team as mistakes cost our health greatly and been relaxed does make a difference.

I hope you get a good professional that respects you and care for you like you deserve. Meanwhile. Here we are to listen if you need us.

Kindes regards.

[Bonnie51462 in reply to HekateMoon]

It's sad that we have to jump through hoops to prove our conditions.. I am glad you found a Neuro to listen to you I find my GP is on my side even though they aren't trained in that field... I hope one day they have a cure ❤