Hello, I am 71 and live in Lancashire, England this is my first post and I am hoping to get some information and help. I had a consultation with my GP two weeks ago because I had a chin tremor. He thought maybe essential tremor but has since written to me to say after he had done some reading he was now sending me to a Neurologist as this is an early sign of Parkinsons.
I am so worried and have cried every day, I know there are a lot of people much worse off than me but this has been such a shock. Apparently there is a reasonably long waiting list according to the letter from my Dr. Should I try and pay for a private consultation, don’t have any medical insurance so probably cost quite a lot. Does anyone have a recommendation for a good Consultant?
Did anyone else on the forum start with a chin tremor and how long does it take to progress to other symptoms. Dr did some tests with me and said I had no other symptoms of PD.
I hope someone can help and thank you, Heather
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gemsmum
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Parkinson's is a call to adopt healthy habits. I am not typical but I am a happier person now than before my diagnosis. I do have a chin tremor although that was not my initial symptom. Are you sleeping okay? Is your digestion good or do you have constipation? I take it no other tremors.. Muscle cramps or tightness?
Thank you so much for replying. No I don’t have any other tremor, don’t have digestion problems nor constipation. I do get cramps in my legs and haven’t slept well for years. I am normal weight 8 stone 12 lbs, 5 ft 4 ins. Do you know anyone who started with chin tremors, do you think this is typical of Parkinsons? Kind regards
It may be too early for anyone to say with 100% certainty, but if I were in your situation, I would assume it is PD because the things you can and should do about it would be good for you even if it's not.
I believe if you have identified it so early in its progression as to have only a minor chin tremor, then if you (read this forum for a week or 2, you will) recognize the value of acting on this early, i.e., get fit beginning tomorrow, you have a reasonable chance of living a normal life. As park_bear points out, it's not a death sentence--it's a wakeup call.
After getting my diagnosis, not wanting it to take over and dominate my life after being told by the diagnosing Dr." There is no cure, there's nothing to be done," I went about my business as though nothing were different. Big mistake.
A lot of people post their regimen under their profile.
As you probably know Parkinson's symptoms are highly variable. With the leg cramps and insomnia this could well be Parkinson's. If your symptoms are stable I do not see any urgency to spend extra to get to a private neurologist early, because early on like this you may get an ambiguous answer. One thing you could try is the high-dose thiamine protocol. If it alleviates your symptoms after 3 to 4 months then that is a strong indication it is Parkinson's. If so, then just continue with the thiamine and you will be in good shape.
Your story is very interesting and you have achieved amazing results!!
gemsmum,
There is a website that claims to have trained dogs to sniff out Parkinson's that might be worth consideration if time is of the essence in terms of a diagnosis.
If it turns out to be PD, you are very early in finding out, meaning that you need not panic. The fact that the chin tremor is your main symptom suggests that you are very early on also and of course there is also the possibility that it is not even PD as other things can cause chin tremor.
Thank you for the replies, they have helped me. I will go to Dr next week to get his advice on whether to pay for a private consultation but as park bear says it might be too soon to get an answer and money wasted.
In the meantime try dropping all sugar and gluten, deep fried foods and processed food out of your diet and increase the amount of vegetables, nuts , beans, lentils seeds, berries and try and eat organic if possible. Also eat less meat and dairy. Start exercising every day. Even if it’s not PD these healthy life style changes can only be beneficial.
I saw three doctors. One said I didn't have Parkinson's, but two doctors said I do have it. My advice is to exercise as much as you can. I read that a man who lived to be over 100 exercised daily up until the day before he died. I was diagnosed in 2005. I regret that the doctor I saw for thirteen years never told me of the value of exercise, so I wasted some time thinking rest was what was good for Parkinson's.
Thank you for your comments and questions. You've chosen a good forum to discuss your concerns with. Many of us have dealt with living with a Parkinson's diagnosis, for many years, and are still hanging in there, so to speak! Initially, to hear that diagnosis, even mentioned, is unsettling, for many people. Because symptoms, for most patients, start so subtlely, it is often not recognized by General Practioners, especially, at an early stage. Mine started with a change in taste and smell. I, also, had essential tremor, which fooled my GP, because that is not usually associated with Parkinson's. Actually, in my case, the essential tremor masked my PD symptoms, and we didn't have a neurologist in the town I lived in, so I lived with slowly progressing Parkinson's symptoms for about 6 years, before my daughter got fed up, moved me to a city, where there is a regional medical center. There I got diagnosed, and am being treated for Parkinson's. Because your symptom is a chin tremor only, I would think that you could wait a bit, to see the specialist, especially considering the expenses, if that is a problem for you. Should you start having bothersome other symptoms, in the meantime, then, maybe, you should check with your GP, and see if you can be seen by the specialist sooner. With me, after a couple years, my tremors progressed to resting tremors of the left hand, chin (occasionally), and neck/head tremors. The neck /head tremors, were very noticeable. After diagnosis, I was put on medicine that has controlled all the tremors, so that, now, one would not suspect that I ever had that problem. There is medicine to help, and one can live a satisfying life, in spite of being diagnosed with PD. Living with a chronic ailment, is not easy, but the secret is to exercise, eat right, take the right medicine/supplements etc., and have the attitude that even though one may have PD, PD does not define who one is, and does not have complete control over one's life. So, I've had PD, for about 10 years now, and am in, what they define as Stage 3. I'm in my 70's, and intend to do everything I can to help myself, to stay as active as I can, each day, as I go along this journey, of having PD. May the odds be ever in your favor gemsmum. Wishing you the best!
Thank you so much ddmagee1 for such a lovely reply, it is very much appreciated. I will continue reading this forum as MBAnderson suggested and hopefully learn a bit more about Parkinsons. Thanks again to everyone, kindest regards!
You’re an inspiration. I’m 72, diagnosed with PD in November 2018. I was prescribed sinemet. It’s been wonderful and I’ve self-prescribed B1 and magnesium. So far, all is good.
tremor is not always a symptom with PD. There are other symptoms that occur early on, like frequent constipation, loss of sense of smell, cramped handwriting. Read all you can and educate yourself. If you go to Parkinson.org, you can view many educational booklets. It sounds like you are in the UK so I am not certain if they would send you any publications but you can certainly try. Best of luck to you
The science is growing by leaps and bounds now, it's amazing to read the scientific papers as they come out.
Prevention and early intervention is your best chance. Though even now they are working on new medications that will be very, very promising, BUT in the meantime, do things we already know about. The latest one, announced just yet today in one of the Science journal bulletins, is even making links to viruses as contributors, largely flu viruses out of China that we all know about, the H1N1 variety in particular, the "bird flus." VERY hot off the presses. But I digress.
Do the exercise. Do the leafy greens, egg whites, L-tyrosine supplement, other high-tyrosine foods, and do not neglect to do a little the vitamin D and the magnesium supplements that both are the "rate-limiting" factors that control how well the L-tyrosine and phenylalanine go past the blood brain barrier and help the dopamine producing cells in the substanta nigra that have not been killed off to at least produce well, follow the use of rhodiola or any other substances that at least have the potential to slow the "re-uptake" of the dopamine produced in your substanta nigra. It's a matter of doing them all together, not just one thing, and do them as early as you may. Consider prophylactic use of L-Dopa with your doctor. DO the mucuna pruriens powder that is OTC. And do things that increase your immune system: GET those anti-virus immunizations, those flu shots. GET THEM every year.
Why early? The data are starting to show that Parkinson's is operating and developing considerable years prior to the emergence of actual perceivable symptoms, and the data are starting to show that the earlier you start the better your chances are to slow decline and degradation of those very delicate and sensitive cells that do not grow back to stay available as long as possible. Research and consider the early use of the B-1 (thiamine HCL) intervention...and be VERY careful to take note, that ONLY the "HCL" variety of thiamine is the one you want, the others may well be ineffective and actually quite toxic in the amounts talked of for B-1 treatment, so DO NOT fail to notice: Thiamine HCL, and no other. HCL, HCL, HCL! And while you can, get a nose for curiosity and start following a few science journals on the matter. They ARE translatable.
Thank you MarionP for your reply. It is all very complicated especially the names of all the drugs which I have never heard of. I am writing them all down to check on the Internet. Sometimes here in the UK they use different drugs than in the USA? I also have Atrial Fibrillation and some drugs are not good for my heart, either making it go too fast or too slow so I have to be very careful. It has been so good to get so many replies, kind regards.
It could be that you are reacting to your current diet, especially carbs and sugar. Try Keto Diet using dietdoctor.com - many people find this effective and it is highly affordable too!
One thing my internist suggested for spasms (which by the way I am now learning that they predominately come on my left side): he said try drinking tonic water, the quinine, even in the minimal amounts in the tonic water, sometimes is known to help. And my neurologist advised to drink more water, period.
I know that spasms are not tremors, but he knows about my condition and still suggested the tonic water. No harm, it tastes good, and there are sugarless versions.
On drinking more water, he opened my eyes to something; I tend to drink so much coffee anyway that I tend to forget that coffee actually removes water from your body on a net basis, what they call a "diuretic."
So I have perceived (don't know if it is truth, it is just my biased perception) that I am getting some relief from the tonic water and more just plain water. Really I got more relief from just drinking more water.
Thank you 11 Dentist, I will try and take your advice and wait and see what Consultant says. It is good to hear from someone from the UK with a recommendation for good consultants. I am not sure where I will get my appointment, probably Preston if there is one there, I will wait and see. I am cutting back on carbohydrates as advised by many on this forum and more fish, nuts etc. I have been reading this forum for a week now and finding it very helpful, is it mostly people from the USA who use the forum, they are very knowledgeable and helpful, kind regards.
I am awaiting a private appointment which my Dr is arranging. I have been away a few days so hopefully when I get home today there will be a letter for me!! No more signs except some cramps in my lower legs. Thank you for asking your dentist it was very thoughtful, kind regards
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