Parkinsons but no visible tremors


#1
hi, havent been on here for some time, i was diagnoised almost 3yrs ago although had the symptoms some 10yrs before. I have read on various sites that when you have PD without a visible tremor, you will progress quicker? I have a inner tremor that i can feel but which is not visible to others, i also have tight chest and throat muscles and when my drugs have worn off, it feels like i cant breathe or swallow properly, i have had heart tests etc and all were normal. My consultant tells me that its all in my head, but it most certainly is not, as when i take my drugs and they kick in, the discomfort goes away. Does anyone else have these symptoms, i am getting to feel very anxious and worried by it all, i am also a carer for my disabled son, so to have this progressive illness as well makes life very hard. Hope theres someone who can make me feel a bit better about it all.

#2
http://www.ncbi.nlm.nih.gov/pubmed/19759203

this paper has four sub types
early onset, tremor, non-tremor, rapid decline

early onset:lived longest, longest delays to falls and cognitive decline

rapid decline: associated with old age, depression, early midline motor symptoms, 70% with tremor

non-tremor: more decline in the pre-frontal cortex (decision-making, organisation etc), otherwise similar to tremor.

presumably someone is in the earl onset sub group irrespective of being temor or non-tremor

#3
Hi turnip, many thanks for your information, made me feel a bit better, i am an early onset PD person, my first symptoms were at the age of 40, i am 51 now and was only diagnoised almost 3yrs ago, when meds are working i am able to do almost everything, i take 14mg ropinerole XL and 100mg sinimet x4 daily. I am anxious of the future and when i read about the non tremor etc, well it made things feel a whole lot worse.

#4
btw i too have a disabled son (Down's).

#5

Hi Barley I was so pleased to read your symptoms as  I have exactly the same. I was diagnosed 18 months ago. I have no tremor as yet not sure if 1 develops over time.My main problem is tight throat muscles which don't seem to be recognised as a parkinson system. I to have read that if you don't have a tremor you would decline more rapidly. I notice your post was back in July 2013 and wonder how you are getting on now. Would be great to hear from you or anyone else that has similar systems. 


#6

I have parkinsons but i have a tremor with mine also suffer with the internal tremor , but for quite a few years i suffered with a very tight feeling in my throat almost as if something was squeezing my throat  and i  also suffered with a tight chest  that at times could feel as someone was sitting on my chest , i did have these symptoms before i was diagnosed with parkinsons  but thinking about it i have not noticed them since i have been taking Madopar

I did under go various tests a Thallium test and echocardiogram  and the tests did show some reverse blood flow in one of my heart valves but medical profession said it needed no treatment just monitoring  i never thought there may be a connection


#7

Just reading your post has made me feel better! I too have no tremor but have tight throat and chest plus a stiff neck. Been diagnosed nearly two years and started on Ropinirole which worked reasonably well for a time then the shoulder and neck pain started and I'm now on Sinemet but it seems to be taking its time to kick in but I can recognize now I've read your post that it is worse when the drugs are wearing off. So sorry I can't reassure you but take credit for reassuring me. Take care


#8

Hi, I haven't been on here for some considerable time, always so busy with life. Well my symptoms are pretty much the same as when I last wrote on here. I have now to date seen 5 neurologists about my breathing and tight throat and chest muscles. Three of them were NHS and two were private and still not one of them can give me an answer that I can agree with. I have had heart and lung tests, various blood tests, had changes of medication, which only made matters worse, Stalevo being the worse drug for side effects, ended up in A&E 3 times with awful tightness, felt like I could hardly breath, shaking, irritable and yet my oxygen levels were 100% ?? Yet again all my bloods were normal too ! I then went to the Royal Derbyshire Centre Of Excellence for Parkinsons Disease, now this is where it all gets very upsetting, the lady consultant who I saw says that in her opinion she doesn't think that I have PD as bad as the amount of drugs that I take would indicate , even though I had a dat scan which also showed PD, she thinks that I have " Functional Neurological symptoms " I am so fed up and upset with all of it, the consultants, the drugs everything to do with PD. After Christmas I will be going back to the Derbyshire clinic for more tests. I will write and let you know of the out come !!!


#9

 

HI

my parkies nurse told me only the other day as turnip had pointed out 70% have tremor and several within the thread say they have the same as you, does that make them wrong also?, i have difficulty swallowing sometimes i have too repeatedly go through the motion to eventually swallow, 

I also have a dry mouth,well before i was ill or diagnosed, my dentist remarked on it my parkies nurse say's that isnt a symptom of parkies,as people with parkies make too much she says,

yet i type it into google and hey presto http://www.epda.eu.com/en/parkinsons/in-depth/pdsymptoms/eating-swallowing/  and if you scroll down further you'll see virtually the words you typed listed "discomfort in the throat or chest".


#10

your parkie nurse is wrong. too much saliva and too little are both symptoms of the disease and side effects of the drugs. many pwp have tooth damage due to dry mouths, particularly at night.


#11

ps difficuly in swallowing can often be very exacerbated by anxiety about swallowing - its a vicious circle- its difficult but try and relax about it. often a difficult swallowing irritates the throat making it feel that something is stuck when it isnt.


#12

Barley,

You can ask to be re referred to a different hospital as you mention Derbyshire I am assuming you live in the midlands somewhere I am under Lincoln county in the east midlands and my PD specialist is one of the best in the UK to get confirmation might be worth travelling, If you want some more info private message me.

 

BB x 


#13

Hi Barley .

I was so relieved when I read your post.I don't have a  visual tremour have been DX around 9yr,and for the last 6months have been getting all the same symptoms as yourself .ihavehad various test ,and have all come back showing no problem.i myself have visited A&E and again nothing found and also been made to feel it is in my head.I also had an Eco  for my heart  and was told I just had a leaky valve wasn't serious and just to be observed. These symptoms  when they start ,are quite frightening, I also have been told t hat I may not  have PD.Then in the next breath told it's down to my PD.I went to A&E just recently with quite a lot of pain, and was told I had a virol  infection . I came out with my chin down to my knees.look forward to your next post.

A4U x


#14

I have inner tremor that is very intense it starts in my feet passes up through my chest and into my throat is any medication to treat this.  I get it most of the day it even worse during the night when I have shooting pains in my thighs.   It feels  as though I am plugged into an high voltage electric socket it is driving me crazy and having a big negative impact on my life.

 

Would any know what it could be and are there there any meds to help

 

 


#15

Hi Graean

I would put it down to Dystonia.......What meds are you taking?


#16

I don't suffer from internal tremor, but there have been some posts around the web and forums that taking a magnesium supplement is helpful.  I take magnesium citrate and find it helps me sleep and reduces my fidgets between doses of medication.  Please be aware that the usual tablets of magnesium citrate are absolutely enormous.  I found them very difficult to swallow.  It may say each tablet contains 200mg of magnesium, but I weighed one on some small scales and it weighed 1.7 grams.  I take magnesium citrate as a soft gel.  They are still huge, but they are easier to swallow.

Good luck.


#17

RLS Ratless leg sydrome is what it sounds like which can be associated with pakinsons. Very misserable.


#18

Thank you for sharing. This is my first post. I also take Magnesium(glycinate) along with Melatonin to aid my sleep. I don’t have an outward tremor but do experience significant gait difficulty. This is helped by Sinemet. I sometimes have trouble swallowing saliva but handle liquids OK. -GB


#19

i have no tremor either …plenty of low bp and carb/levo seems to not work …wonder if it is msa for myself hope not …was diagnosed in oct 2017 feel like i am going downhill fast …maybe some physical therapy will help .any body same?..scared


#20

I have no tremor either. I was diagnosed 8 months ago. Not much has changed since then other than getting a little stiffer. I take sinemet, amantadine and pramipexole.