Hello, I am still undiagnosed, have a neurology apt 22nd Dec.. Briefly, after seeing a doctor at the hospital about memory problems she did some tests, including MRI and CT scan. On her letters to me she mentioned Bilateral Bradykinesia, predominately in the upper limbs, Past pointing and slow coordination,slightly increased tone in upper limbs and and subtle reduced arm swing. All of which were a surprise to me.
I have noticed when I am resting or have got into bed, I am aware of strange flutterings in my chest. I feel my pulse which is normal. I always have tingling in my legs which may be Spinal Stenosis. Does this seem like inner tremor and can a neurologist detect it, even though there is no visible sign. flo
I am not a doctor but unfortunately, to this layman,, it sounds like PD ,but think positively and understand that for a great many of us, having the condition is a nuisance but we are able to get on with our lives rather normally. For many, the deterioration can be a long, slow process and the drugs seem to keep symptoms such as tremor calm and virtually non-existent while on the medication.
I have been seen by 3 neuros, two of whom asked about "inner tremor". I think they can recognize it. How, I don't know. One who asked about it also said that he hears about inner tremor all the time
I doubt it is a spinal stenosis, or if it is, it is in a very early stage. I had a spinal stenosis about 5 years ago and before it was fixed by surgery, I could not walk 5 paces without excrutiating pain. Believe me, I would take slow progressing PD over the pain of another spinal stenosis any day.
I hope your neuro's diagnosis is what you want to hear and I wish you the best of luck
Hi wpgchap,thanks for replying. I was in hospital recently, I got out of bed because of severe cramp in both calves, I fell, hit my head on the floor hard and was unconscious. The x ray of my hip and spine(I had hip pain) showed my hip not too bad but Spinal Stenosis. I have previously had a caudal epidural, and don't want another. Armed with Quinnine, pain killers and a cold, I developed a mouthfull of painful ulcers, not knowing what had caused them my doctor said to stop them all.
I have started the quinine again, the cramps at night have eased, but my legs always ache.
When I saw the hospital doctor recently, I don't think I had the inner tremors, or didn;t notice them, but I do now.
This waiting is getting to me now, another thing I get is, if I get woken up in the morning by my husband, I can't move, it's like my body is in a knot and I can take quite a while for my arms to move. Very scary a the time. flo
i dont know if this snippit is of much relevence but months ago i was talking to a locum doctor on appointment, he seemed pretty clued up with PD or at least had a interest in it, he told me tremors we feel them in our hands ect but our whole body is infact tremoring if that makes any sense.
I have this too, often you can see the tremor in my hands but sometimes they feel like they are really shaking but I can hardly see it, its weird! I get the fluttering in my chest too and in my legs sometimes. I hope you get some answers soon, im still no closer to knowing whats going on with me so I know how horrid it is not knowing x
Hi Suzynola7, I waswondering how you were, I think there are a few of us wondering have we or haven't we. I haven't seen a tremor only felt it. At the moment, my legs are buzzing, and I can't settle, the fidgets I call it. flo
I can see my hand tremor all the time but sometimes it feels a lot worse than it looks! Im mostly struggling with spasms lately, my hands keep getting stuck in fists and my mouth got stuck shut earlier. Not seeing neuro til feb though. Whats the next step for you?
Hi Suzy, are your blood tests ok eg calcium. I have got neuro apt 22nd Dec, the hospital doctor 7th Jan and should be getting an apt for the memory clinic some time. So much waiting, I know they have to be sure, but the waiting isn''t easy, is it? flo
I dont know what blood tests were done but apparently they were normal and the MRI on my brain was normal too, so now the neuro thinks its psychogenic but Im sure its not =( so Ill probably wait for ages to see him again and he will just discharge me, thats what usually happens. I really hope you have more luck and get some answers x
Thanks Sea angler, yeah Im going to try and pluck up the courage to ask for a DAT scan when I see him in february. When I had the blood tests a while back I did see he had written on the sheet to test for copper so I assume that would be the Wilsons test. I know emotions etc can aggrevate my symptoms eg stress making the tremor worse but Im sure theres a physical underlying cause, I have a tremor whether Im happy or sad and can seize up whatever my mood so psychogenic doesnt make sense!
I have a obvious tremor in my hands but i do some days feel the internal tremor where it fels like my entire body is shaking on the inside a very strange feeling indeed
Yea Shelly it is a really strange feeling because I get it at times! The shakes in my left hand gets worse as the weather gets colder as well! Brrr dreading the winter!!
Have you got sorted out Shelly now with all your entitlements?
I get it too in my right side - very strange feeling . I find it irritating . Agree with you about the weather Sheffy .My hand goes very cold and numb with the cold weather . I seem to feel the cold a lot . My husband says our house is like a sauna !
I too have hand and wrist spasms which are excruciating and contort my wrist for a few seconds/minutes. No idea what to do about them but I sympathise. I've had PD diagnosed 2012.
I don't feel like my PD is under control. I'm 56 and working part time.I talk less as I feel drunk and my voice is weak. My body and joints are SO stiff I can't reach my toes.I have internal tremors and don't feel in control of pain. My bladder is weak. I need to go now not in a minute ! My joints are VERY painful. Especially hips and wrists.I'm taking Madopar 125 mg 3 hourly with top ups of dispersible madopar for quick fixes and daily Neupro patch which by evening makes me feel spaced out. I'm tired to the point of exhaustion and see my neurologist 4 monthly at present. PD nurse is a disappointment. I call her but she takes ages to reply. when she does she's knowledegable but doesn't call to see how I am after a few days /weeks/months.
Flo ; Go back to your Dr's and INSIST on a DAT SCAN this is the only scanner that can detect PD and you can push to be referred for one if your GP is unwilling change your Dr or ask for a second opion.
Suzynola7
You are scared I understand but you must have a Dat scan as well ( did they do one on the 22nd?) some times you really have to push to get the answer even when is staring them in the face
Trelawney
Yes PD can cause a inner tremor and it is a very uncomfy sensation I have pain in my hip and legs all due to my PD I am on Madopar 62.5 MG x 6 tab's per day. Your PD nurse does not sound much cop I would suggest you ring this Website help line number they will call you back.
Thank you BettyBlue. I'll call the helpline. You've shown a greater response than my PD nurse. Sorry to hear you too get pain. I get comfort knowing I'm not on my own in this condition.
