Hi everyone I'm new here seeking your thoughts. Referred to neurologist but within 5 mins said I don't think you have PD! He looked at my hands to check out tremor. Tremor is an intermittent mild symptom for me however I had a mild RT sided tremor so he asked me to hold my arms out Infront then stated it's a positional tremor only, not typical of PD. Is this right? No other tests done ie finger tapping, touching nose, nothing. Because I pushed he ordered a Dat scan but I note that this can often be negative.
Worried as falling a lot, the last led to Broken leg, dislocated knee and fractured ribs. Happy days eh
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Sharray
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is he a motion disorder doctor? essential tremor and pd are two different animals. et does not imply balance issues and falling. you need a second and maybe a third opinion. I saw five doctors till I got a correct diagnosis.
Thanks Ion. I don't know if he was a motion disorders Dr, I waited 8 months to see him and he was an agency medic.
My symptoms started about 8 years ago and most problematic is the terrible cramps and twisting of limbs. Stiffness, slowness, choking and drooling, unusual sleep walking and talking and of course balance issues, 3 falls in a couple of months.
I'm no doctor, Sharray, but what you describe here are indeed signs of PD.
DaTScan will certainly be useful. The other good test is to take - gradually - a significant amount of L-Dopa : if the symptoms tend to disappear, then it is PD.
Did the neurologist that you saw even give you a chance to set forth the symptoms as you just did here?
>Waiting another year to see someone else is daunting. I just feel like taking control of my destiny ...
I have another word for this, waiting another year for treatment is unacceptable. I suggest a two-pronged approach: mucuna and high-dose thiamine. Both are nonprescription. If you need links to get you started let me know.
If you do decide to try B-1 with Mucuna as park_bear suggested, here is some information on B-1/HDT that you may find useful. The following page offers a little background on Dr. Costantini as well as information about his protocol, dosing information, where and what to buy, benefits that forum members have attributed to the addition of HDT to their PD regimen and much more!
I notice people here are being quite definite that you show signs of PD even though they have never seen you and the symptoms above could be other conditions besides PD. As it is very difficult to diagnose PD in some people I think their confidence is misplaced and potentially unsettling for you when you see the neurologist. People here can speak from their experience but there seems to be very little understanding of neurology in general from posters.
explains that essential tremor is/can be progressive, it involves problems with gait and balance, walking difficulties are common. About half of patients have associated dystonia (cramps), including cervical and cranial dystonia (head and neck), writer's cramp, and 20% of the patients have associated parkinsonism. Olfactory dysfunction (loss of sense of smell) is common in Parkinson’s disease, and has also been reported to occur in patients with essential tremor. A number of patients with essential tremor also exhibit many of the same neuropsychiatric disturbances seen in idiopathic Parkinson's disease such as mild cognitive impairment.
Given the rate of your disease progression I think your neuro knows that this is more likely ET rather than PD. A DAT scan is reliable and would help with diagnosis but it is only worth having one if you accept the findings. Otherwise an expensive undertaking being injected with a radioactive dye.
i have read that ET can progress to PD in some people. AS to the meds regime, the use of card/lev to see if its PD is out of fashion nowadays but still you could try it. It would be less accurate than a DAT scan I would think. Personally I wouldnt be taking any other meds suggested here until you know what you are treating.
Many thanks Nikki, I do understand what you are saying. I did not realise that essential tremor followed that pathway. My own research suggested that my one sided tremor that was only seen when at rest pointed more towards PD.
I also saw posts that suggested the scan has had false negatives.
I don't jump into things so please don't worry, at the present just absorbing everyone's thoughts and wait to see the outcome of my scan. My concern was that seeing 2 neurologists who did not attempt even a basic neurology assessment.
Some on here have their favourite treatment that they think they should promote to everyone no matter what. At the moment it is B1 but it has been coconut oil, fast walking etc.
I too thought only PD started one sided but then found papers which said ET could be one sided too. I dont know about your tremor but the neuros understand more about different types.
Scans are considered no more definitive in diagnosing than a good neuro. A small group of people have negative scans but with PD symptoms. They are still trying to understand this. This may be the false negatives you mention. The other reason would be that the person reading the scan is not skilled enough.
It is interesting that 2 neuros didnt do any testing. That could be because they are not good neuros but it could also suggest that you dont present as having PD to the trained eye.
What I notice in people with PD besides the 3 cardinal symptoms are the lack of facial expression and the lack of arm swing on one side.
I don't swing one arm at all which became evident when trying to use 2 crutches, never noticed myself. However I do have facial expression. Reading the Thiamine articles has led to to the need for further research as I had bariatric surgery many years ago which has led to bit B deficiencies. Now I wonder if this could be a possible cause of my symptoms. Will for sure research this further and check how much Thiamine is in my meds.
Since you're a nurse you already know this but loss of arm swing is caused by weakness, an early symptom in many neurological disorders, not just PD.
You know this too but maybe others who read this don't: you need to address comorbidities such as endocrine disorders to root cause symptoms.
I gave you neurological tests that you can do yourself to narrow your diagnosis. When you stick out your tongue do you see fasciculations? If so, you do not have ET. Is your tongue enlarged, if so you need to have your thyroid checked, ask for the whole panel, not just TSH and T4. Thyroid dysfunction can cause neurological symptoms.
Are you diabetic? This also causes neurological problems. It can be primary or part of global endocrine dysfunction of the HPA axis.
We humans are complex systems, doctors seem to forget this at times.
Hello Sharray, I'm with you, concerning the falling. I had some falls, one very serious, so I can sure understand that. My General Practitioner didn't figure out what was wrong. I presented to him, with mainly essential tremor. We didn't have specialists in the town I lived in. After about 5 years, or so, of symptoms gradually getting worse, with no diagnosis, my daughter moved me up to the city where she lives. They have a regional hospital there, with specialists. I was referred to a movement disorders specialist, who gave me a complete neurological work up, and checked my history, and medical records. He diagnosed me, after seeing that my symptoms of resting tremor, stiffness, rigidity, etc.were all relieved, to an extent, by a regimen of carbo/dopa ( Sinemet). So, my advice to you, would be to get a second opinion. Sometimes, in the early stages, Parkinson's can be very difficult to diagnose.
This is the second neurologist I've seen but because I've got other conditions they link my symptoms to them. I'm a nurse and a Dr at work said the symptoms were typical of PD. Waiting another year to see someone else is daunting. I just feel like giving up and try to manage the symptoms as best I can. I've already had to leave work as too tired all the time and pain hard to cope with. I've also started to have cognitive problems.
I'm so very sorry to hear that you are so discouraged! I'll never forget the years of pain and exhaustion that I had, too! There were times that I was ready to just try to live with it, but my wife encouraged me not to give up. She is sick with heart failure and diabetes, herself. Do you have to wait another year? Try to hang in there, and keep on being persistent. There must be a reason for your symptoms. It may not be PD, or maybe it will end up being PD. Time will tell. If symptoms start getting worse, my advice would be to see if you can get a referral to see a movement disorders specialist, sooner, rather than later. A good neurological specialist will pick up on very small, detailed symptoms. In my case, I presented with both intention and resting tremor. Usually, PD starts with resting tremor, is what I was told by the doc. Wishing you the best!
Thanks for your reply, Yes the tremor was noticeable when I was sitting holding a single sheet of paper at work, only my tight hand though. No tremor when actually doing stuff though. GP never mentioned a movement specialist. He doesn't think I have PD either. I get the impression that once one thinks this the others follow suit. Maybe I'm just paranoid 🙄
hi sharray well my doctor kept saying i did not have pd i kept telling him i had so i went to see the neurologist with in 10 mins he told me i had pd ,yes with your arms stright out in front of you wiggle your fingers on both hands if the wiggle in both hands are different then u have parkinsons, all the things u have talked about tells me you have parkinsons for sure dont wait tell your doctor to let you try sinemet or madopar dont wait as i know your in a lot of pain as every one with p,d gets it dont wait go see him or her as soon as you can you should not be having all theses things happen to you in this day and age i feel angry thats still happing regards john.
Pl get your thyroid test amd see the results.sometimes the tremors are due to this.
It is not necessary for a qualified neurologist to get the SPECT or the PET to assess PD but they conclude seeing the physical movement of your hands and feet.
Check with a professor of neurology again and then decide on treatment...
I have a range of autoimmune disorders which I reckons muddies the water somewhat. Under active thyroid is one I take thyroxine and recent checks were normal Merckk
I would seek a second opinion if you have other symptoms..I was not diagnosed for years after first symptom of uneven arm swing noted by.smart sports teacher. My friends all diagnosed me-especially medical research friends- but my intelligent young doctor missed it completely. When finally diagnosed by 2nd neurologist, young Beth Israel doctorsaid, “it doesn’t matter as there’s nothing you could do anyway”. WRONG
Yeh my friends (plus 2 Drs at work) told me too as PD didn't occur to me. Don't swing RT arm at all realised this when trying to use crutches.looked at PD symptoms check list and managed about 92,5% lol. It's so frustrating coz I'm sure Meds would help. Made magnesium oil as recommended on this site and it helps massively with the cramps.
I also have no tremor yet. Try a different doc. Ask your doctor friend for referral. Meanwhile I read research. Swartzchild at mass general hospital found caffeine nicotine and other stuff I’ve always avoided may slow Pd progression. I use nicotine patches and now drink green tea and coffee
As I said before, the sinimet was what revea;ed that I had PD. I had no tremors but I fell a lot also the fact that my legs froze ocasionaly when I walked, I had trouble walking and talking. After taking sinimet I was able to walk and talk again. That was the firs proof I had pd. Still don't have tremors but sometimes the ridgidity is bad.
I felt like I was going to fall A lot. One Neuro also ordered the dat test however after talking to a rep from a pd group she said results are not always conclusive with dat. A doc at a teaching hospital also told me he did not think I had I' had pd yet he gave me a prescription for carbon levo. It helped me right away. No more feelings of falling. Easier to walk etc! The test was to try the meds. For me and doc that was the answer yes I have pd! I wonder if sometimes doc hold back from trying this simple test with a low dose meds because of money.
Yes. I was so thankful my neurologist let me try carbon/levo instead of ordering a very expensive dat test that another doc originally ordered, but I declined. Thankfully I got my diagnosis the less expensive way with trying carbo/ levo. Just sharing my personal story. Have a beautiful week.⚘
Could you give me the full name of the drug? If I ask to try this can I argue that taking it even if I don't have PD will not harm me. Thanks everyone for your support it's much appreciated x
I have seen 2 specialists and one fobbed me off with another. I have tremors and falls. I am on Thyroxin and a lot of other meds. I was told to lose weight ,exercise and all the usual rubbish he said the tremors were because of my age "70" he said I was depressed. wants me to have Xrays for the pain and see a dietician. I am following all his instructions but I know they are worthless just the same as the 2 specialists have made me feel. Worthless!
I agree with other comments, try l-dopa but make sure they give you a big enough dose and long enough so that a diagnosis may be possible. They gave my husband l-dopa to test to see if he had PD but not enough, so no improvement which prolonged a proper diagnosis for two painful, stressful years! Keep pushing, I wonder if there are any Dr. Houses' in the real world? An obsessed neurologist with no kids or cottage that simply will not stop until they find a diagnosis...only in the movies I guess.
Go to your primary doctor, get a referral for a second opinion and ask for priority. You can't wait months to be evaluated.
Falling is a serious neurological disorder, loss of balance is called ataxia. The causes are primarily cerebellar (you need a brain MRI, if you're getting a DaTScan it will pick up atrophy) and CNS (sensory ataxia, this is what I have) it can also be vestibular disease. Some metabolic disorders and cancer can affect the nervous system.
Two tests to pay attention to are: Romberg and Reflexes. In PD the reflexes are normal, in MS and ALS reflexes are brisk (hyperreflexic). The Romberg is easy to do - first put yourself in a safe position (stand with your back to a corner with a chair in front of you without touching them - to prevent falling) stand still with your feet together and your arms at your side; do you begin to sway? Next, close your eyes, are you able to stand still? For people with sensory ataxia, like me, closing your eyes takes away proprioception and we can no longer balance. If you have brisk reflexes and sensory ataxia, then you need to been seen by a neuromuscular disease specialist.
I'm not trying to scare you, you already know that you have a serious problem and asked for opinions. The first neurologist told me I definitely did not have PD. My primary symptoms were ataxia and dysautonomia. I wasted 2 years chasing down my diagnosis with movement disorder specialists. My initial dx was Parkinsonism with tremors and I thought I had MSA, which was later ruled out by a neuro-ophthalmologist (I also had a DaTScan).
I have ALS Plus syndrome. My mother has PD, and I have learned that PD and ALS are related disorders of the serotonergic system. Dopamine is neuroprotective in ALS. ALL neurological disorders are treatable, but you need to know what it is you have. The sooner you know the more effective your efforts for recovery will be.
For everyone on HU, please seek the advice of a functional medicine physician. It makes all the difference.
22% of people with ALS are diagnosed post mortem at autopsy. This is an appalling statistic. I want to raise awareness and empower people to take charge of their life.
Many thanks, latest update DatScan normal, I have had two brain Cat scans in the last year both okay.
The test you mention Romberg's was strongly positive. I swayed badly with eyes open and fell backwards with them closed. I told both neurologists that I thought being in the dark made my balance issues worse but they looked at me as if I was crazy! I have my blood pressure tested frequently as I have Addison antibodies which causes BP to drop. Over the last few yrs my BP has dropped considerably and I instinctively take a high salt diet to stop this worsening.
Reflexes were once highly excessive but this is not always the case sometimes they're normal.
I have been referred to another neurologist as the previous one was only temporary. I can only hope that this one does a fuller assessment.
I didn't read the other comments or your reply before writing my own comment, so I didn't know you are a nurse. I think my comment had useful information for other readers. I think you're on the wrong path with a PD diagnosis. You've had enough brain imaging. You need NCS/EMG tests. An in lab sleep study will uncover central events if they exist and will give you another objective piece of the neurological puzzle.
What you want to do is move the needle towards a neurological disorder and a way from a psychological (somatic) disorder. There was a research study done on young doctors who thought they had ALS, one actually did. Doctors can have bias, and it appears so in your case. Are they trying to cover up a medical mistake?
Here's the research paper I referenced, it links Parkinson's disease, Parkinsonism and ALS.
There are several proactive things you can do to gather objective evidence of neurological dysfunction with the help of a sympathetic GP. While you are waiting for the neurology exam, ask for referrals to OT to measure strength and dexterity in your hands. Ask for a swallow study and evaluation by a SLP. Ask for a referral to PT to assess your balance. Get the sleep study. I think you mentioned shortness of breath, ask for stress testing and a heart echocardiogram. Ask to see a Pulmonologist for pulmonary function testing WITH albuterol challenge. Go see a neuro-opthalmologist, don't discuss light sensitivity or night blindness, this automatically puts you in the psychological group. You want objective testing of your vision, that means you don't introduce bias. MS has specific ophthalmic signs, clear brain scans don't rule it out. It's reasonable to request a spinal tap. If protein is elevated it is suspicious for blood cancer. Non-hodgkin's lymphoma is linked to ALS. When you get to the neurologist ask for antibody tests, since you already have a history of autoimmune disease you want to rule out Paraneoplastic Syndrome.
All of this will take the better part of the year, when you get to the neurologist you will be armed with objective data and they will know you mean business. Do not hesitate to go to the emergency department if you experience sudden worsening of your symptoms.
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Bring a smile!
Update - Neuro appointment and Neupro!
3:1 cbd
PD without tremor
Does Sinemet help to stop tremor?
