Help please


#1
please help went to the doctor for something to do with my leg he said to me you have a very bad tremor in youre leg and hand sent me to nuero explainded to them about my hand and leg plus my bladder problem and my lack of memory and that my hand keeps going into spasams so does my leg also have problem walking so stiff getting out of bed is a nightmare
lol
my husband told her that i forget thimgs and say thing cant remember they did some test like finger to nose and straight walking to wich i can do none with left side of body and right my name left there with no answer to what the problem is after being told that i had likly got pd from another doctor what does anyone thinh is this normal practise ps sorry about the spelling cant remember how to spell

#2
hello terri,I am sorry that you are panicing. It would seem to be very common for people to go to their GP for some reason unrelated to their tremor and to be referred to a neurologist. Sometimes this can invole a very long wait and I think it is good that your GP picked up on it.
The finger to nose, walking and writing tests are standard.
I like your husband already for being there with you
I can only speak from my own experience, but it is difficult to get a definite diagnosis.
I do hope that now the ball has started to role that you will be able to get some help with your problems. And don't worry about your spelling
With my best wishes

#3
Hi.

Originally I went to my GP with pins & needles down my left arm, thinking I might have a circulatory problem, i.e. a heart attack in the making. However my GP was immediately suspicious and sent me to a neurologist who examined me and said I had all the classic symptoms of PD - tiny handwriting, stooping, shuffling gait, tremors, poor sense of smell, etc.

Nonetheless it was a couple of years before he would commit himself to saying it actually WAS Parkinson's. Before that he just called it "a Parkinsonian condition", because there are apparently so many different complaints which all exhibit the same (or very similar) symptoms.

I understand they can only be 100% certain whether their diagnosis was correct or not at post mortem!

Ray.

#4
Hi terri like every one else i thought i was just going with a trapped nerve in my wrist yet i always had at the back of my mind it could be PD so although it was scary it wasnt a shock. Take care chris46

#5
Hi terri,

I too went to my doctor with a list of weird but minor problems and got sent to neuro. He organised a dat scan that confirmed my parkinsons. Although devasting, it was good to know definatly what i was dealing with and left no guessing. I suggest you ask for the same (but be prepared to fight for one as they are expensive!) Best wishes to you and your supportive husband.

#6
hi terri,


what a lot of people i have heard of with pd have had to wait a long time for a diagnosis i went to my gp was having problems with my right hand could,nt move my fingers very well he suspected pd and refrered me to a neuro within 6wks i had my diagnosis not what i wanted to hear but at least i knew what was causing my probs,they sent me for a scan just to rule out anything else have you beed see by a consultant if you have and they have,nt given you a answer then seek a second opinion you can ask your gp for a referal to another consultant, after i was diagnosed it was 2 yrs before i was seen by my specialist he is,nt a neurologist he deals mainly with eldely patients but also with pd patients as well but after the first visit i was then only seen by the pd nurse, so i went to my gp and asked for a referal to a consultant neuro who i had heard give a talk on pd but he practises in newcastle about 2hrs away from where i live but it is worth the traveling only once a year he and his team are wonderful his name is proffesor david burns better known to his team as proff burns maybe its worth a try for you to see someone else as well get a definite dx good luck sue.

#7
thankyou all for youre kind replys told on monday that as i am so young only45 hahaha that it is unlikly that i will be given drugs as they try to keep them till im older and in greater need of them is any one else the same i have been given valium twice daily is that right andcoadine for the pain just cant get my head round all this thahkyou for all youre help

#8
I was diagnosed 3 years ago at 48. started on Ropinirole straight away which allieviated lots of my symptoms. The choice for medication is the patients not the consultants, their choice is to explain everything and advise. I did have symptoms for about 5 years prior to diagnosis so was happy to start medication on day one. Good luck

#9
can anyone tell me what is best course of action go to bed at night cant nove roll over get up in the morning so stiff in my anckles back and hands brings me to tears every morning stoop like old women for best part of he morning till can get moving is any one else the same can you tell me what you do to get rid of it or are you taking meds for it:cry:

#10
at my wits end

#11
Terri i`m like you I can`t turn in bed very well either and i`m sore and stiff in the morning. half an hour before getting up I take my meds then by the time I shuffle to the bathroom and then to the kitchen to make breakfast i`m a bit better but it`s not till the afternoon that i feel more like myself.

I have to ask o/h some mornings to give me a push to help me get out of bed.

I`m sorry i can`t help you - perhaps someone else can help both of us.

Val

#12
I tend to sleep only 2-3 hours at a time, interspersed with waking spells like this one. I'm quite happy with this, though - it's peaceful at this time.

My basic medication is Stalevo daytime and Sinemet CR at night, but I'm also supplied with Madopar Dispersible 50mg, which I'm allowed to take a max of 4 times in every 24 hours.

This gives you a short boost when YOU decide you need it. Could be just before getting up, bathing, shopping or whatever. Each tab takes effect within about 10 minutes, and then lasts about an hour.

May be worth discussing wih your Neuro?

Ray.

#13
hello terri
try this - put a 2nd duvet under the bottom sheet. Then you have a bed with a firmness that suits you but is nice & comfy
Silky/satiny type sheets might help you to turn over & get out of bed more easily
Best wishes

#14
Hi, the satin sheets can work quite effectively however, a word of warning. Do not combine them with satin PJ's, I did just that and I only needed to think 'toilet' and I shot out of the bed and was in the loo before i could even sort meself out!!! lol...redface I did consider sewing velcro to my PJ's but got rid of them instead.lol

Glenchass

#15
Hi Terri,
Sorry to hear your difficulties. The sheet ideas are good. I think you're going to be trotting back to your Neuro tho to get this situation better.
I'm older than you, am still at work most days, part time , and simply could not do this without effective medication. You need to be able to function better , now.
I can identify with the stiffness and feeling about 100 , in my case it was 108.
It took a while to find the best meds. for me , and the pd. nurse , if you have one will help.
Life is now. You must not be afraid of trying to raise your quality of life , thinking you have to hold back from the specialised drugs which help us make our condition manageable.
All the best
Lorna

#16
Hello Terri - I can totally relate to your problem with turning in bed. I havent tried the silk sheet route but can really recommend a rigid bed grab rail (it fits under the mattress) so you can use it to help you turn over during the night and also to help you get up in the mornings. I bought mine, but you could ask your OT if they could supply one for you. Just returned from a couple of weeks away and, yes, my bed rail went with me and was really useful. :smile: Hope this helps. Love SueW xxx

#17
We have a wrought iron type headboard which I can grab to help turning over. Works well.

#18
hi terri,


i am always stiff in the mornings from the tips of my feet to the top of my head, i have got an apo-go pen which is a bit like a diabetic pen it contains apomarphine but it is not a pain killer as the name morphine suggest,s, it,s a dopermine agonist which when you knock off you give yourslf a injection and within ten mins you are back to normal well almost normal its brilliant, you could discuss it with your pd nurse or gp, its worth a try you would need to go in to hospital, to have what is called the apomorphine challenge where they stop all meds the night before then they will start on the injections to determine what dose to start on its brilliant it starts to work within 10-12 mins where as my stalevo can take up to an hour and a half the apo-go just gives you that boost which lasts for an hour untill the oral meds start to work its worth thinking about good luck sue.

#19
Hi Terri, you can get a self referral for an Occupational Therapy assessment. I did this and am now the proud owner of a bed post! It is a device that stands beside the bed so that I can get in and out of bed and also turn over during the night. Try your local Social Services for the number to call. I am also going to get a perch stool for the kitchen (no funny comments Ray about roosting), a kitchen redesign to incorporate an built in oven, currently have one built under and regig of the bathroom to become a walk in/wheel in when necessary shower. Everything has been arranged via Occy Therapy including the application for an 80% grant towards alterations. Some people are entitled to 100% grants. This has all taken place from assessment to installation in the matter of 2 months. Just give it a try, it could be worth it.

Good luck

#20
hi went for mri scan yesterday to see whats what still not been given any pills told to wait fot the results of mri dont no why any ideas had brain spine and lumber this is becoming a farce now have to wait for the concultant in september for some pill my gp is good but refuses to give till the neuro says so gpt physio booked but can hardly cope had big fall down the stairs becouse my leg froze any ideas please getting really fedup