What am i suffering with? Essential ... - Parkinson's Movement

Parkinson's Movement

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What am i suffering with? Essential tremor? Pd? Or fnd?



My tremors started internally last September. My internal tremors arevery apparent near my periods

. Since then they have come to my hands left then right




I have balance issues

I shuffle along the floor

I do not have a right arm swing

I do not blink often.

My seance if smell is or has deteriorated a lot.

I freeze a lot from getting out of bed to walking over different surfaces.

I have a stiff trunk and neck

My right shoulder is very stiff.

I have bladder urgency

and can go for days without going for the other.

I get shooting pains in my elbows knees ankles and hips.

Not all at one time

I get cramp a lot

I kick and punch in bed and have vivid nightmares where I can be screaming out loud and not be non the wiser.

I have quite poor memory short term.

Can anyone on here help me please? I am on no medication and no am currently awaiting heart scan results as I get a super fast heart beat and woerd palpatations.

40 Replies

Go to your doctor with that list, and ask to be referred to a Neurologist specialising in movement disorders.

Hidden in reply to M_rosew

I did he said I read him a list of symptoms off the internet and that it's anxiety and fnd...

I have had a clean result from a lumbar puncture.

I am low in vitamin d so I'm on vitamin d 400iu a day.

My doc referred me to mds and I got sent on my way...

I have had mr i of my brain with showed to nom specific lesions and grey and white matter

Beckey in reply to Hidden

An MRI can not be used to diagnose Parkinson's. A DaTscan can reveal whether you have PD or ET. How dare your doctor claim these very specific symptoms are the result of anxiety! You deserve some answers, and some treatments to help mitigate your symptoms.

Hidden in reply to Beckey

Now this fnd umbrella term has materialised any time I call the doc it's like I'm being patronized.. I have changed doctors once as I asked my first doctor for a second opinion and they said why do u want to see a mds that's for parki sons u don't have that...

So I went to a different doctor and wrote a letter saying my symptoms and told him of he thought I needed an appointment to contact me which he did he did bloods thay showed low vitamin d then I got an appointment with the movement disorder soecialiedt and he didn't listen... N just said I read him my symptoms off thenet which were apparent in the appointmen..

When I asked him why he just said anxiety. So how am i supposed to get a doctor to take me seriously when the professionals arnt.. i said i have not read off the onternet i said i live like this everyday!!!! And im doing my ultimate best to get on with it... i have joined an fnd site but im not like most of them... And my family are having a hard time believing me.... the docs say ur anxious andndepressed..

the only cause of me become anxious or depressed is the fact that I'm not being taken seriously micheal j Fox got diagnosis early.

I have been to see a Chinese herb man and even he said it's not in ur head... I give up on what approach to take :/

ET is the most prevalent tremor disorder and is one of the most common neurological disorders among adults. ET is often misdiagnosed as Parkinson’s disease,

it can affect individuals of any age including middle-aged or young adults and children. In rare cases, it has been reported during infancy. Individuals with a family history of ET tend to experience earlier onset of tremor. ET affects both men and women and individuals of every race or ethnicity.

Symptoms can include

Shaking of arms hands, head neck voice jaw tongue voice

One side affected more than other

tremor with voluntary movements pouring a drink, drinking from a cup, drawing, or writing.

Postural tremor - shake when you hold hands out

Resting tremor sometimes

Internal tremor

Reduced sense of smell

Ataxia - walking problems

Cognitive - memory problems

Hearing impairment

There is also a dystonia form - cramps and stiffness

micturition disturbances may be found in ET patients, and physician should approach to complaints about urinary incontinence in these patients as non-motor findings of ET.

Many symptoms are like PD you would need an expert to diagnose you. Hope you get Help with all this soon.

Hidden in reply to Hikoi

Thank you so much

I might show this forum tomy gp

Hidden in reply to Hikoi

Also some of my other symptoms are swallowing issues

I get worse in the heat so much worse.

My hands tremor at rest too or when I'm doing something


As ever sound advice from Hikoi. It is always helpful Such as:

to have a little background information when responding to a request for help, such as:

where are you from (I'm UK)

your age (I'm 67)

what other conditions you are being treated for (heart attack)

what meds you are taking (for PD I take Requip & Sinemet; for my heart related Aspirin,



I don't know anything about fnd but there is a forum on here called - Functional Neurological Disorder - FND Hope.

Doesn't seem to be an essential tremor group here unfortunately


Thank you all.

I'm 25 from the Midlands and currently on no medication.

It would be nice if the doctors didn't think I was making this up.. or just reading them stuff from the internet.

Leilani23 in reply to Hidden

Dear Bumblebee,

It enrages me to hear that they think you are making things up. That is so unfair. Let THEM experience some of these symptoms and see how they feel!


It can often take a few years be you get a diagnose of Parkinsons . As far as the tremor is concerned , in Oarkinsons the tremor is usually worse while at rest . For example u might reach out to pick something up and tremor . Once you grasp hold it will stop . that's Parkinsons. If it doesn't stop its essential tremor . At least that's my understand of it .

Hidden in reply to cabbagecottage

Yeah this is quite typically me I relax my hands and there's no spltopping themhowever if I'm holding a pen or a glass itit's like my wrists that wobble.. Does this make sense can Iupload a vide? On this site?

I don't know , some put photos on but nt sure about videos . Good idea .

I daresay not all are the same but I think that is th general rule with tremor ,

John won't be able to speak but if I ask him to sing he can do , depending how is is at that time of course

Just reading through your post . John was diagnosed with atrial fibrillation after his parkisons diagnose . Where are yr cramps . John had them in his feet and ankle . He takes Amitriptyline low does now and I raise the knee part of his bed . He had a hospital bed . You could try rolling a towel up or small cushion under yr knee.

John has all those symptoms . Make sure you make stronger tasting food , keep bowels open and regular . Take something ..

Hidden in reply to cabbagecottage

I get cramps in my toes and calves and thighs. Xx

Hi bumblebee 666

Not knowing what the problem is can be so frustrated.

I read an article once about the most noted symptom of PD and it said to focus on the sense of smell.

It said that if you have been diagnosed with PD and your sense of smell is good

Get an other opinion.

A neurologist should help you there but we need to look at our symptoms on our own as well.

My husband has PD and his sense of smell was deficient long before being diagnosed.

Bodiepipe in reply to leojohn

And that, Dear Folk, is why my fragrance precede, Me, anders leaving everyone sneezing after I am gone! :


Yeah my sence of smell is diminished quote I lot.

I was painting with masonry paint the other day and couldn't smell it. My boyfriend said can u seriously not smell that so I put my nose right toward the paint tub and took a massive sniff and said no.. notice I buy things reading the label's and not smelling them to see if they are nice..

I was in a shopping mall the other day and said to my mum I can smell that but what is it.. she said paraffin... like I should be able to smell and know what that is!!!

I'm eating flaxseed and walnuts to keep me regular..

I have low vitamin d so I'm on 400iu a day.


I have always had really low blood pressure too.

I have s ebherrioc excema

I went through fainting whilst at school low blood pressure they said they couldn't figure out why I kept passing out.


I cannot help you with a diagnosis but I will make some simple suggestions that may reduce or relieve some of your symptoms while you make the round of various doctors.

First of all I am a nutritionist and from your variety of complaints it is obvious that you are low on a lot of electrolytes (minerals) especially magnesium, potassium and zinc. My husband has been diagnosed with PD 11 1/2 years and has dealt with a number of your issues at various times and some of these have helped him tremendously. He is 79 and still working at a job that he loves and takes no PD meds (This is not meant to suggest you do the same. He does not do well with many medications and has chosen to employ more natural fixes where he can.)

1. Make sure you are well hydrated. Are you drinking at least 64 ounces of water each day? Herbal teas if you drink them can count for up to half your water. You may need more based on several factors. Dandelion root tea can be helpful, especially for your constipation.

2. Do daily foot or regular baths (if there is someone around to help you) in warm water and 1-2 cups Epsom salts and 1 cup Baking Soda for 20 minutes. You can add a few drops of Lavender or Lemon Balm essential oils if you happen to have them. This allows your body to take up the Magnesium your body requires. You may want to supplement with Magnesium also, but I could not make a specific recommendation without knowing more about you.

3. Best results will be seen when you increase your fruit (especially berries, cranberries and blueberries to help your bladder) and veggies to 8-12 servings (all colors) per day. This will provide you with multiple nutrients that you can't get just by taking a vitamin supplement. Notice where you are now and just add one more serving every day or every few days. This will give your body a chance to adjust to the added fiber (remember to get enough water).

4. Include good fats like 2 Tbsp. Extra Virgin Olive oil or Avocado if they are not already in your diet.

5. Eat yogurt with live cultures or kefir and other fermented foods daily. You may also like pickled veggies if that appeals to you. Also include foods high in "Pre-biotics" like onions, raw garlic,raw jicama, raw Jerusalem Artichoke, raw Asparagus, raw Banana.

6. Choose organic and non-GMO foods whenever possible. Reduce as much as you can processed (packaged foods) and sugar in your diet. This will make a big difference. Try it to see.

7. Set aside regular times in your day (when you awake, before meals, before bed) to practice finding a place of peace through meditation, prayer, just slow deep breathing or creative visualization. Yoga or Tai Chi are wonderful as well. What appeals to you or is natural works best but this will greatly reduce your anxiety. Look up Jin Shin Jytsu on UTube for an additional approach. I personally love this practice and both my husband and I see a practitioner regularly.

8. Up your Vitamin D! 400IU will never raise a low level. Many research scientists and clinicians recommend between 4000 to 10,000 IU per day and suggest you get retested after 3 months. You want to raise your level to between 40 and 60 ideally.

Well that's a lot, but start with increasing water if needed and then what resonates with you and notice what changes. Just keep adding one more thing as you go along.

Hope that helps. Wishing you much joy and peace!

Hidden in reply to answerseeker

Hello thank you so much for that.

Thank you for taking the time to write it too.

I do need to up my water intake but I get scared too as i miss the toilet.

My daily intakes are these basically


coffee or tea

porridge with milled organic flaxseed almonds walnuts and co enzyme q10

I it has magneisium in selenium omega 3 and fibre.

I have a nutra bullet also that I make shakes with milk and blueberries shltrawberries and banana

in an evening I make stir frys and use extra virgin or sesame seed oil.

I do have the occasional chocolate bar or bag of crisps but I tend to snack on olives or sunflower seeds and cashew nuts

I have been doing this for the last six months

I also eat red pepper soups chicken dishes no red meat and salads. I have veg in most my meals and

Can't seem to stomach anyprocessed foods anymore

I also cannot drink alcohol as it makes me worse. I will take head ur advice and drink more I'm just scared of boy making it to the loo whilst I'm at work

Hidden in reply to Hidden

I also have a yoghurt everyday and honey and camomile tea before bed. To help me sleep

Hi Bumblebee. It sounds as if you have Parkinson's disease, but you should see a neurologist and get his/her opinion. You can do many things to solve many of your problems but only you can do them, not others. There is nothing you can take that will slow down the progression of Pd. But there is fast walking that has been proven to slow down or even reverse the progression of Pd. as it has with me.

If you would like to learn more then go to my website - reverseparkinsons.net and read a great deal about what you can do to help yourself get better.

I have had Pd. symptoms since 1963. I am now 81 and have not taken any Pd. medication since 2002.

What I do can certainly help you to stop shuffling and many other of your symptoms you mention.

Good luck


Hidden in reply to JohnPepper

Hey John thanks

I walk most days able it themajority of my steps are on my toes I play yoga on my Wii fit and I kickbox ones a week. But I don't seem to be getting better.

JohnPepper in reply to Hidden

Hi Bumblebee. Fast walking produces a chemical in the brain called GDNF (Glial Derived Neurotrophic Factor). This little sucker repairs the damaged brain cells, that is if you have Parkinson's disease.

Will you email me at johnpepper@telkomsa.net and I can help you, but much of what we will talk about is personal and difficult to discuss on this platform.

Kind regards


All the above are right but they are wrong too. Supplements and diets help (I am the Queen of both) but will not stop or cure Parkinsons. Notice everyone writes of their personal perspective, including your dr. There are dozens if not hundreds of variations in PD so you MUST see a neurologist specializing in movement disorders for a diagnosis.

Your dr is right but limited. There is a correlation between movement disorder and depression, particularly anxiety but that is not an entire answer. Depression/anxiety are some of the first symptoms of PD, long before stumbling and tremor. SomePDers don't have tremor at all. Almost all have BP problems it not all have orthostatic pressure. Almost all have constipation problems but not all. After using fiber, digestive enzymes, Mirax, Colace and enemas, we settled on a dr's recommendation of 1000mg l glutamine 2x daily which is great for the gut. Also use Activia yogurt and Align but it's the glutamine that's the best! While most may suffer smell loss, not all do. My husband does not. He has terrible anxiety which is easily seen as related to movement ability. See above post on using l-theanine for that. There is a medication to slow bladder tremors. Use disposable diapers in the meantime but stay hydrated or things will get worse.

Here is the underlying philosophy: a progressive disease like PD will slowly drag down all systems. The use of supplements, diet, exercises, acupuncture, hydration and adjunct meds for things like urination will help slow the downward progress by keeping all the systems as healthy as possible. There is an 'anchor effect' in disease which once having attacked one system, will drag the other systems down as well.

Hidden in reply to Donzim

I have seen many doctors.. I have seen a neurologist and a parkinsons specialist there saying I'm making it up or its all in my head or its anxiety and depression I am not depressed nor anxious I laugh off most of my symptoms and make up names for myself like shakin Stevens wobbly Bob and say yeah I'm just cold or oh yeah I'm a bit stiff.... but they think I am just doing this myself... My doctors will not listen because of the pd specialist basically saying I read him things off the net. I'm living every day as a new day I see friends I see family I do all I can I run a business too...

I am eating healthy I have a cat now and a boyfriend.. even he sees it. And knows I struggle.

I think because I'm 25 and female it's like nah she's just stressed. I am not stressed about anything.. Ihave done all I can to get rid of any stress mum takes the reins in the business I just come to work and go home

where do you live? if the neurologist thinks you have a depression problem, what did he suggest you do? so what if you read the symptoms off the internet? everybody does....that's how a lot of people even know they have something wrong with them. it would be rare to have PD at your age but not unknown.


I have been depressed before and I had a bit of anxiety a long time ago. But this is very different.

Hidden in reply to Hidden

In the Midlands I have been to BirminghAm to see a pd specialist and to Nottingham to see a neuro


Yes and I asked him why my seat was tapping off the wall.. why my right arm doesn't swing he said I see u walk on ur toes and I said yes otherwise I'm shuffling on the floor i shown him my hands tremor he saw my tongue tremor.. and I asked him why it all gets worse near my periods he tapped my feet with that stick thing and got me to move my hands up and down and because I was nervous everything was obviously worse. He just said he's going alone with the first Neuro of fnd diagnosis


I am also to scared to ask for any more help from doctors because they have been told its fnd and I can make myself better...

so I'm now anxious about the doctors thinking I'm a hyperchrondriac...

the pd specialist asked if I drive I said yes but rarely at night because of seeing figures and blurred vision and I only tend to drive around my local doors or I get picked up. He asked if I got lost whilst driving and I replied I have been known too get lost a lot. And I always stick to the route I know. :/

Hikoi in reply to Hidden

Bumble bee you say you been given a diagnosis of FND but I take it you don't think this is correct?

Everyone here is likely to put you in the PD category even though a lot of your symptoms fit other conditions not just PD, but if you went on another forum eg essential tremor, they would focus on that.

It's fine to get info here but No one here can diagnose and shouldn't diagnose just by reading what you write.

It's disappointing to read that they have offered you no help and if you have fnd they say you can fix yourself! That's not helpful to you at all! Whatever your diagnosis you need help with your symptoms.

Hidden in reply to Hikoi

I'm just trying to get some answers on how to get myself better when I am doing all I possibly can.

I am with an fnd site and we chat back and forth even some of them have said that I need more opinions. Because i was diagnosiled a working diagnosis of fnd. And I'm speaking with people with fnd and there are some differences here also...

Hidden in reply to Hikoi

How can I be certain of being given a diagnosis that's fairly rare.. after a ten minute consultation and someone who said I have just read of the internet? How does thismake it seem certain in my mind they know fully wwithout ruling other things out?

Why is my sense of smell diminished? Doesthat happen in fnd?

Sorry if this seems a little sterner. But I'm really trying to get somehelp

FND symptoms taken from the fnd forum on here.

Functional Limb Weakness

Functional Tremor

Functional Dystonia/Spasm

Blackouts / Attacks

Sensory Symptoms

Functional Walking Problems


Word Finding Difficulty

Tiredness / Fatigue

Slurred Speech

Bladder Symptoms

Sleep Problems

Poor Memory / Concentration

Bowel Symptoms

Drop Attacks


Swallowing Problems

Worry / Panic

Complex Regional Pain



Health Anxiety

Hidden in reply to Hikoi

What is a functional tremor compared with a resting tremor?

Hidden in reply to Hikoi

How can you find out if u have functional weakness compared with actual weakness? Is it the same thing?

I am no Dr. but you have all the symptoms of PD . Make an appointment with a Neurologist.

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