Questions from a confused person

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 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

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.

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

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.

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.

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

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 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 !

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!

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.

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.