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.
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
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
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 !!!
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".
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.
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.
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
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
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
Hi Graean
I would put it down to Dystonia.......What meds are you taking?
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.
RLS Ratless leg sydrome is what it sounds like which can be associated with pakinsons. Very misserable.
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
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
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.
hi, sorry i am not able to cheer you up but i too have a disabled person in the household who i would like to look after better instead of them looking after me! Anyhow, i suffer from chronic dizziness and fatigue 24/7 which gives me no respite whatsoever. i can hardly walk, which is due to dizziness and balance problems so all in all, the future doesn’t look too bright. i hate having parkinson’s and all of its symptoms but i suppose i’ll.just have to get on with it. sorry for moaning to you but that is how i feel
just now. i desperately need someone to talk to as i can’t tell my family because of their worry.
I don’t have any visible tremors. I was diagnosed two years ago although my symptoms had been with me for some 3 or more years. A diagnosis became urgently needed when I had to renew my driving license. The consultant said I needed to put PD as a diagnosed condition. It took a while but I am able to drive and maintain my freedom.
The inner tremor and feeling of anxiety can be unbearable. I take Madopar 100;25 four times a day and was using 5mg Neupro patches once daily. I had an unpleasant skin reaction so have been changed recently to 6mg Ropiniriol controlled release. This seems to be making a huge difference overall. At least with Ropinirole added to Melatonin at night I get a reasonable night. The only downside is that at wearing off time I get uncontrollable jerks of the arms and legs, enhanced inner tremor.
Does anyone experience a total restlessness? Unable to settle physically or mentally. Constantly finding jobs to do whether it be fence painting, clearing out cupboards, housework, putting things in order. In fact anything that stops me sitting down and relaxing. I’m always on edge and looking for the next task. I experience some fatigue but feel I should be absolutely exhausted.
Constipation is another problem and I take 6 sachets of Movicol a day to help this problem even though I eat a healthy diet with lots of fibre, vegetables and fruit.