Parkinson's Movement

17,811 members • 17,868 posts

Questions from a confused person

I have 2 questions.

(1) I was recently diagnosed with PD. At least the neurologist said I had PD because of jaw/chin tremor. A couple of months later he said that I did NOT have PD because I also have full body tremors, which are NOT characteristic of Parkinson's. Does anyone know what these full body tremors ARE characteristic of? It is as if my whole body is vibrating.

(2) I have lost over 30 pounds in the last year without trying. Is that typical of early stage PD?

I'd really appreciate your advice. I think this is a wonderful community. I love the way everyone is so supportive of others and also how knowledgeable you folks are. I read the posts every single night. I feel lucky to have found you all.

Leilani

47 Replies

oldest • newest

Hi Leilani. Because of the support group I'm in, I know a lot of people with PD & I've never heard of anyone losing that much weight in that short of time. Did the doctor give you any ideas on what else it could be? I would try to get in with a movement disorder specialist to get a second opinion. Also, I was diagnosed 11 yrs ago at the age of 46 & I didn't have tremors much until a couple of years ago (still not bad), but in the last few months I've been waking up in the middle of the night with full body tremors. They don't last a long time, but they are annoying. I usually lay there & try to do a full body stretch & that helps. Let us know what you find out.

I did lose 30 p pounds also d within 2 years. I think it's from the dyskinesia.vi can't gain weight.

Hi, laglag,

No, the doctors don't know exactly why I have so much weight loss, so I'm going to different doctors and having a bunch of tests now. So you don't think the full body tremors are unusual for Parkinson's?

Thanks so much for your email. I wish you the best ~

Leilani

I wouldn't expect a neurologist to make a diagnosis on the basis of a single symptom. PD exhibits itself with a complex number of symptoms - and everyone's presentation is unique. Just a tremor to a specific area of the body would never be conclusive evidence.

Unexplained weight loss requires diagnosis by a competent physician. It isn't to my knowledge a typical symptom for PD.

Ask your Dr. for a DATSCAN it is a test that shows the part of your brain is affected.

Hi Leilani,

I too have lost approximately 25 lbs. since last April. My neuro says it is that I am taking less calories? My GP doesn't know at this time without more tests. My thyroid has two nodules. Biopsies showed atypical cells. TSH blood tests were normal. So I will have to keep on with more tests. I do not want to remove my thyroid at this time.

i have PD since 2011. I do not have tremor. I am hoping to find a neuro that advocates using a natural treatment. I no longer tolerate Sinemet well. Wearing off and side effects are dreadful.

With much good luck to you in this journey. It is very inspiring to know that so many are struggling but are willing to help.

Best,

Puddlejumper

Hi, Puddlejumper,

Good luck with all the tests. It's no fun, but it's important to do them. I too have 2 nodules on my thyroid but I'm lucky that the biopsies showed that they were benign. Couldn't you have just the part of the affected thyroid removed, not the whole thyroid? I had half of my thyroid removed 40 years ago and have never needed medication or anything.

I wish you the very best in your journey. Let us know how you're doing, OK?

Leilani

Thanks, Leilani,

I will see my GP on Tuesday and discuss the further tests with her. I will keep you posted for sure.

Many thanks for all your help and concern,

Best to all,

Hi, PJ,

Good luck with your GP tomorrow! I hope you have some satisfactory news about the thyroid stuff. I'll be thinking about you.

Leilani (Judy)

Thanks so much Leilani! I will keep you posted.

BTW, in the 60's there was a popular singing group from Hawaii, can't recall the group name, but one of my favourite songs was "Sweet Leilani". Have you ever heard of this song?

Hi! I definitely know "Sweet Leilani"! I hear it all the time here and also play it on my ukulele. I can't remember who in particular sang it in the 60's. If I figure it out, I'll tell you. I loved the music that was out in the 60's -- very mellow and melodic, with Hawaiian harmony styles. It's very different now. Reggae and Jawaiian are popular - perky but repetitive rhythms.

My husbands situation sounds much like yours. The Sinamet is causing very difficult dyskinesia. He also has no tremors but is experiencing chewing/swallowing difficulty. Lost 40 lbs that I now realize was a huge mistake (see my reply to Leilani). Due to finding and consuming more edible foods and liquids, we've managed to put 8 lbs back on him. Minimum 2500 calories a day. Are you still taking Sinamet? He would like to stop taking it but afraid he will not even be able to stand up. Other meds have worse side effects from what we've read on this site.

Red read sounds like me. Same symptoms. I want to get off the sinemet bit can't walk good e without it. Although i am worse when coming off the med than at night or morning. Please let me know how your husband fares . Thanks

Hi Redread,

I take Sinemet every three hours, starting at 7:00 am. I also take a nightime controlled released Levo/carbid with Comtan. I am in bed by 9 or 9:30 pm and awaken normally at 5 or 5:30 am. The controlled release pill helps me to sleep longer and am very grateful to have it. I have slowly eliminated the 7 pm Sinemet which helped eliminate most of the dyskinesia.

I have and continue to have difficulty breathing (at times) and swallowing. My neuro says it is the non-motor movement in PD. Since I am not entirely convinced that the non-motor movement is the cause, I am researching the possibility of my thyroid as well as my parathyroids (I had surgery in 2006 to remove two tumors) are somehow connected to my PD. I do not feel that I can go off these meds entirely though.

Good luck with your husband, keep us posted.

I agree with LAGLAG and KNXSOFT

Even Neurologists are not created equal. There are some that specialize in tumors and surgery,some stroke rehabilitation and some in Movement Disorder and others generalize. I suggest that if you do not already belong that you contact your local PD support group and attend a meeting. Talk to the others with PD and determine their experience with Neurologists in your area. I did this and as a result, I asked the neurologists that I was seeing (who specializes in Stroke) to refer me to a particular Movement Disorder Specialist. He was happy to do that. I was lucky and obtained an appointment with a leading world renown expert in PD.

The first meeting with him lasted about 4 hours. (EDIT: 1pm to 4pm is only 3 hours, sorry) He asked me a million questions about everything from sleep habits, gambling to sex and he did a complete physical examination and I performed a bunch of movement tests and only then he confirmed that I had Parkinson’s. He then put me on a medication that the previous neurologist. had taken me off and laid out a strict routine of medication, exercise , diet and rest explaining the importance of each and said if I had any new symptoms or problems or new questions to contact him. I now see him when I need to via a computer linked video screen at our local hospital. Every time I see him we go through the same tests and he again confirms that I have PD. He said that it would be difficult for a specialist to keep updated to the latest information in multiple fields. Get a second opinion.

These are excellent ideas, Gymbag. May I ask where you live? I wonder how to find such a specialist. I need to get on the stick and find someone on the U.S. mainland because I completely understand the point about it being difficult to keep updated on multiple fields. I lived in Washington, DC, for 40 years and never had the problem before of limited number of physicians.

Thanks!

Leilani

Leilani, if you send me an e-mail requesting 'Symptoms' and the Rainbow Books, I will send you a list of 100+ Symptoms and how to order some wonderful books for FREE. E-mail me @: macbunch@Hotmail.com

Note: This offer is for anyone needing this info. Knowledge is Power....

Charsie

Please send me the list of books too.

Kay

Listing all the signs and symptoms that I am aflicted with to a greater or lesser extent I got up to number 40. So charsie and anyone else who may be wondering about symptoms that point to a diagnosis of PD. Certainly one is not enough. I wonder charsie what is your score out of the 100+ is?

Pete-1, I had 25 symptoms as of 2 months ago with none over a "2" score. 2 weeks after Sinemet - 40 days now: Things that have gotten Better by % just since starting Sinemet!!

Bradykinesia Better - 20%

Cognative better than I thought - 35%

Day Time Sleepiness - 40%

Energy - Increased - 30%

Fatigue - Less - 30%

Hand Writing Better - 30%

Moods Better / Happier - 20%

Ratcheting all but gone

Shoulder LESS painful (left) - 60%

Tremor - down to only 5% (*)

(*) even when doing public speaking!!!

Above is an example of how the 100+ Symptoms can help/chart PD

Anyone interested in the form: E-mail me @ macbunch@Hotmail.com

Charsie

So my husband was just diagnosed with PD. Has no tremors but most everything else on your list including loss of taste and weight, Ortho static Hypotension. I am wondering what the Rytary will help him. I hear so many confusing things and I am hoping the meds help him.

Hi, everyone. Thanks so much for your responses. I was trying to be brief in my posting and didn't mean to imply that the PD diagnosis was based on only one symptom. I started with a diagnosis of essential tremor about 15 years ago, with tremors in my hands and legs and jerking occasionally in my legs. About five years ago I began to have trouble with balance and started showing a prominent bobbling in my head. This year I began to have a strong jaw/chin tremor, and that is when the neurologist diagnosed me with PD because the jaw tremor is pretty specific to PD. That's why I mentioned that specific symptom.

My father and his sister had Parkinson's Plus (I don't know which kind) and his brother had Parkinson's.

What I was asking about is clarification about whether any of you have full body vibration tremors with PD, and whether such a weight loss is common with PD. I'm not on any PD meds yet. This type of tremor is what my neurologist says is NOT characteristic of PD. I'm undergoing a variety of tests with other physicians to evaluate the potential causes of the weight loss.

I do regular brisk walking and exercises to try to fend off further development of symptoms.

An additional question: Do those of you who refer to Movement Disorder Specialists live in Great Britain? I live in Hawaii and we have a very limited pool of specialists here. I will probably have to go to the mainland to get a second opinion, which is probably a good idea.

I forgot to mention that I'm currently in physical therapy for shoulder and hip pain, similar to what others have mentioned on this site. It has really helped me to read that others have gone through the same thing. The physical therapist told me that it's really wise to do the exercises to free up the shoulder joint of adhesions.

You should have your thyroid checked - much more likely a problem there with that much weight loss in a short amount of time. It could also explain the whole body tremors (trembling?) This would be hyperthyroidism.

Thanks so much. I'll call my internist about this.

Leilani

dear leilani, i had graves disease in the late 80's. and half my thyroid was buned out with nuclear drugs.

it was no big deal, and i do take a thyroid medication to bring the throid up to where it should be. i too lost 30 lbs, of weight . i was getting really concerned when i dropped to 101 lbs. i was losing ablout a lb a week, and i wasn't sure how much i could lose before there was little left of me. my husband checked into at a health food store, to find something to gain weight. yes there was. and i'm holding pretty steady at 113-14 lbs. now i have a smoothie every day that consists of 4-5 ice cubes, 1 cup of milk, 2 TBLS of ground flax seed, and 1 pkg of carnation essentials. after that is well mixed, i add two heaping scoops of vanilla ice cream. and the vita mix does a heck of a job of whipping it all together. and it is very good too. and i seem to be maintaining my weight very well. that is every day i have that. and i'm not tired of it. it's really good. i like it thinner so i don't get a brain freeze. hope this is of some help.to you.

judi

Wow, what a good recipe, Judi! Thanks a lot! I'm going to look into the thyroid as a possible cause of my weight loss.

Best wishes,

Leilani

Hi Lelani. I am not a doctor, just a fellow patient. I don't understand your symptom, as described by you. Does your whole body shake, while you are sitting relaxed? Or does it shake when you are trying to do something? I get the shakes when I am stressed and am trying to fasten a button. Is this what happens to you?

Pd is not an easy condition to diagnose, so don't be surprised at your neurologist's change of mind.

John

Hi, John. It starts with a feeling of vibration inside when I am either sitting, like eating lunch, or lying in bed, or most recently, having a nuclear medicine scan. Then after a little bit my whole body begins to vibrate as if my body were a cord that someone applied electrical energy through. It's like a thorough, refined tremor, not like the shaking I get in my hands or the heavy bouncing tremor I have in my jaw. It's hard to describe.

Thanks for the comment that I shouldn't be surprised at my neurologist's change of mind. I was pretty shocked at that. Especially since he seemed to imply that it could be related to a cancer of some sort.

My husband was just diagnosed after two years of back and forth. He has no tremors but on occasion what you describe will happen to him where his hand will start shaking with a heavy bouncing tremor like and it happens sometimes to his legs while in bed. So strange.

Hi cybersue. I don't know what your vibration can possibly be. Read my previous post and see if that makes any sense to you.

Kind regards

John

Hi everyone . Could the tremor possible be dehydration . My understanding is Parkinsons is NORMALLY !! tremor while resting or in relaxed position .

Can you tell me please how the air tremor affects you , does it cause you to drool .

My husband had trouble describing things to me . I am sure he knows but struggles to explain . How many of you also suffer from Attial Fibrillation !

Hello, Cabbagecottage,

Your question about dehydration is a good one. I'll pay attention to that, since I've noticed I'm not drinking as much as I used to. I do not drool though.

Luckily no attrial fibrillation. Does your husband go through that on top of everything else?

Thanks,

Leilani

Yes unfortunately he does . It drives him crackers . We have tried everything possible suitable drug but he is so very sensitive to them and cause hallucinations

After being diagnosed in 2010, my husband began to lose weight that we didn't really think was going to be a problem. Well, it turns out that it's a BIG problem now. He began having a bit of difficulty chewing food and just left food on his plate, asked me to reduce portions, etc. He was never overweight, so it's not like he needed to lose weight. At that time, we should have thought about liquid supplemets or pureed foods that he could easily consume. Now, I am spending much of my day preparing a diet that includes 2500 calories minimum at a time when he has more dyskinesia problems that cause choking. He takes most of his calories in liquid form and has managed to gain back 8 lbs since August. The moral of this story is to either see a nutritionist to decide how many calories you need to maintain your weight and how many grams of protein should be consumed OR do this yourself by researching recipes for pureed drinks, etc. Do your jaw tremors interfere with or discourage you from eating enough solid food? I found a product on Amazon. com that is shipped to our house. It is Boost VHC vanilla flavored 8 0z drink boxes with 530 calories and 22 gr protein each. Husband drinks two each day plus a small, chopped dinner. I couldn't find this Boost in the retail stores. It's not cheap so you have to look for the cheapest way to purchase. I put different flavors in the basic vanilla because hubby gets sick of the same flavor. If you don't need the Very High Calorie supplement, Food Lion and other groceries offer their own liquid supplements that are equivalent to Ensure Plus. Do pay attention to the weight loss...don't let it get out of hand. You need the strength that good nutrition provides. Good luck!

Dear Redread,

Oh, my goodness, I should really think ahead then. I have been thinking like you did that it isn't a big problem right now except for the question of WHY am I losing the weight so rapidly. Thank you for the warning. I appreciate your detailed description of how you deal with it. It's really a battle, isn't it. More power to you, and to all of us. Your husband is so lucky to have you!

Truly didn't mean to alarm you, just a caution. My husband is 5' 11' and started with a weight of 170 lbs. Over time, he lost 45 lbs and ended up, after a bout of pneumonia, at 125 lbs. It was shocking. Now he's up to 137. If we had paid attention at the time, he wouldn't have to be on such a strict regiman. Good nutrition is critical as we all know and it only takes a bit of planning to make sure we take in the correct number of calories each day. If they can't be solid food, then liquid will suffice. Those recipes I posted are between 500-600 calories each. I googled "very high calorie pureed drinks." Stay well, Leilani!

Thanks so much, Redread. I'm at a safe enough weight for the moment but will watch the decline and try not to let it get out of control, thanks to your warning. I can see that your husband's loss was really severe.

Take care of yourself too ~ you need the stress reduction as well, right?

Best wishes,

Leilani

My husband just diagnosed for sure a few days ago has lost over 30 pounds in less than a year and no one can figure it out.

Leilani, Here are homemade recipes in case you don't want to buy liquid supplements: 1c. coconut milk, 1 frozen banana, 4 Tablespoons Nutella, 1oz almonds, 2 TBS maple syrup. Also try 1 c rice milk, 1 c soy yogurt, mango, 2 TBSP honey, ground flax seeds.

THANKS. I'll print this out and try it.

Redread do you have any more recipes? I am sugar gluten and dairy free m. It's hard to find things eat. I also try to eat 2600 calories a day. I have had significant weight loss. I am worried about the effects on my heart. Sometimes when my tremors are bad I feel Mt heart pounding and Wonder how much longer it can go on like that in this weakened body

I did have trouble finding enough high calorie smoothies for my husband without using sugar. I did blend avocados into soup mixtures that he would /could drink. Just Google "high calorie soups" or smoothies and adjust the ingredients accordingly. Use honey instead of sugar. I follow Web and Facebook pages for groups that use and emphasize clean foods. But your weight will be critical going forwardr so its good that you are aware. I also used organic protein powders in those soups and smoothies. Both plant based and egg based protein powder that I purchased from Amazon. You can read the reviews of each powder to learn about the nutrition in them, etc.

Thank you!

I have a complete list of all the PD Symptoms. Email me @: macbunch@hotmail.com I will send you a list. Note, this is open to anyone.

My husband who was diagnosed in 2012 has all over tremors and he lost about 30 lbs. in the first year or so and more since. They put it down to the constant movement of the tremors using up calories. I think you need to see another doctor, preferably a movement disorder specialist.