Newly diagnosed and confused


#1

I was diagnosed in December 2014 but have had a tremor in my left leg for a long time. Since being diagnosed my symptoms have got worse. I now tremor most of the time in my left leg, I have a upper body tremor which I can feel but cannot be seen. I have a twitch on my right side when I am resting. the twitch stopped happening a few days ago but has been replaced by a feeling of being dizzy, it's like being on the deck of a ship at sea. I have not seen any clinician since diagnosis but have an appointment at the end of April. Please, I am not complaining just explaining so please be patient about a new patient. The support I get from the local branch of PD uk in Thurrock is fantastic.This online community is such a help.

Has anyone had similar symptoms. I am trying to understand the symptoms before my April appointment.


#2

Hi dave,

it sounds like you want to hear others' experiences. That's really the best thing. But I just wanted to let you know that we also have a booklet on talking to your doctor.  It helps you to log information before your meeting. It's in our publications section. If you have any trouble finding it, let me know. 

Best

Ezinda


#3

Hi Dave welcome to the forum . I was diagnosed in sep so relatively new myself . I had many symptoms . Some for a few years . It took a long time to diagnose it . I had bad restless leg syndrome and I had the internal tremors you talk about that can't be seen by others . I still have the internal tremors but Nothing like they were and the restless leg has gone . I could watch my leg jumping . I started on azilect straightaway tho and I am on ropinerole now slowly building dosage up to 8 mgs .This probably accounts for it . Are you on any medication yet ? Some people wait a while if their symptoms are mild . Personally I needed to start on meds straightaway as I had been struggling for a long time and it was affecting my quality of life . Some of my symptoms have improved - stiffness , back pain , handwriting - couldn't write .walking . I couldn't walk down the street . 

This forum had helped me too . I have not been to a support group . There is a working age group not too far away but not in my area . ( I'm 45 ) I work for myself and still working full time . I find it difficult sometimes but hoping with the right level of meds can carry on . Best wishes for your appt . 


#4

Hi

i am 49 and have been taking Sinemet since last October.  Initially seemed to go well however I feel like a moving target in that I get the hand of why things make me worse ie I can walk miles but can't move out of the chair in evenings or adjust when walking and fall,  lately I have had trouble with Blood Pressure both high and low and also headaches and dizziness,  the Parkinsons nurse you can phone through this site are fabulous.  They suggest sleeping more upright about 18 inches and drinking a pint of water before getting out of bed for Blood Pressure etc.   I think quite a lot of it may be anxiety because as soon as a symptom starts I worry.  I am due also to see a movement specialist at the end of the month to consider with Parkinsons or a plus syndrome.   Anxiety and worry of the unknown  is possibly part of how you are feeling too Dave St pier.   Maddison my legs jump.  My issues have mainly been right sided for about 7 years really,  initially diagnosed fibromyalgia.  I hate the way it makes me feel, it is so hard to tell what is the disease and what is side effects. I also work full times but having few weeks on sick until meds reviewed, sleep is not good.

on a positive note I have just started yoga after speaking to pd nurse I think it will be helpful for core strength, stretching and to alleviate some anxiety. 

Take care

karen


#5

Hi Karen - welcome . Hope this message finds you on a good day . Hope appt with movement specialist is helpful . I agree the waiting and wondering is really stressful . I had problems for a few years before diagnosis . I hate the way it makes me feel sometimes too . Some days are better than others . Friday was a bad day .Did not go to work .  I find it hard as I was always a very well person . Hardly ever even got a cold . Rarely off sick and have my own business which I suppose is added pressure at times but has its advantages too . If I'm not well I can alter my days around somewhat . Don't like to moan and trying to keep positive but not easy when you don't feel well is it ? I have thought about yoga but did do it years ago and didn't really enjoy it . Pilates is supposed to be good too . I love walking / have always done a lot of walking since childhood . My parents are avid walkers so we did walks like The Three Peaks , Ben Nevis as kids . I walk with my dog everyday and have now got an exercise bike . I go to hydrotherapy once a week . We have booked a week away and will be taking our dog with us so hopefully will be able to do a lot of walking. Last aug when we went away my walking was terrible ( diag sep ) just trying to sort out pain in right side head arm and leg . That's my main problem . Best wishes . 


#6

Hi Maddison

i I have been to yoga this morning- only the third time.    I am finding it really relaxing also I think it is helping me get a grip of the high anxiety I feel.    In yoga today she was taking about brain retraining ie to brush teeth with different hand, cross legs the other way etc.    it makes sense to excercise  the brain,  I felt really unwell Friday evening also I then tend to worry and get upset and everything gets worse.   I find it's mainly the evening that I feel a real unease, it's horrible

i was wondering about an excercise bike , do you find it helps.?

i don't really want to go for appointment with movement specialist in case he feels it's one of the more complicated Parkinsons syndrome.  I know I need to get on top of it as much as I can

i am on my third week off work, I need to feel more in control to return.   It's strange I have had problems for about 7 years mainly right sided over the past month or so blood pressure, dizziness and feeling as though I am on a boat has become more of a problem

i feel fed up of moaning too and must drive my husband and friends mad.    I think it's good to off load in order to then get up and keep going.

take care

enjoys the walks with your dog

speak soon

karen

 


#7

Hi Karen hope you are ok 

Glad the yoga seems to be helping . Maybe I need to give it a try again . Talking about brain retraining I did read about a pwp that was trying to learn to write with their unaffected hand . 

When is your next neuro appt ? Maybe your meds need looking at . The anxiety is a horrible thing and seems to come hand in hand with the PD . The more anxious we get the worse the symptoms . Perhaps this is what's happening . You are naturally going to be apprehensive and anxious about seeing the movement specialist . I am no expert obviously but your symptoms sound like PD and your neuro feels it is this . Many neuros still rely on their knowledge , experience on PD  when the patient presents in clinic . Many diagnose without DAT scan . There have been people on this forum who have had negative DAT scan but diagnosed and treated for PD . If you have had symptoms for eight years it sounds more like PD . 

The physio suggested getting an exercise bike to increase strength in my right leg . I have been doing a couple of miles on it ( only on level one . There are five ! My son gets on sets it at level five and does about six miles ! ) I think it helps but building it up slowly as find it tiring and my leg hurts . Handy in winter or if its raining at any time . 

Know what you mean about fed up of moaning . Sometimes I bore myself , but you're right you feel better for it and can carry on . Anyway we can always moan to each other on here if we feel the need to off load . Take care . Hope you have a good day x


#8

Hi Maddison

my appointment with movement specialist is next week 29th April

i have a list of question which will probably finish him off

funny my issues are mainly right sided arm and leg.   I had no problems with my head until about three weeks ago when blood pressure went all over the place.   Perhaps you need to check you blood pressure

saying that my blood pressure more settled this week but my head muzzy like end of headache.  Do you have problems with your eyes when tired?  My right one especially feels like it's turned but looks normal

facially I look different I am worried about this.   On a good day I feel positive and it feels like the wind just needs to blow and I am in chaos again

i think I will try the bike.   Do you find when you sit down in the evening everything flares up.?   I think some of it is fatigue ?   I also find if I twist and bend and carry out small movements it has a terrible effect.

the weather is so great at the moment I am trying to go one day at a time but am putting a lot of hope that when meds altered I will feel better 

enjoy the son and take care

try the yoga, let me know how it goes

x

 

 


#9

Hi Karen hope everything goes ok with movement specialist .  Good idea writing things down to ask . 

I will check my blood pressure as haven't had it checked since early feb . I need to get my eyes tested . I've noticed my vision is more blurred . Facially I'm sure I look like I've got a permanent frown . I know the masked look is common with pwp but I think this is more to do with concentration . 

Of an evening I feel very tired . A lot of this is because I'm still working full time and I get in about 6 sometimes a bit later . I do feel stiff and getting out of chair mire difficult . I guess the meds have worn off somewhat as I take them about 630 am . I am on 6 mg ropinerole now increasing up to 8 mg . Don't feel well when first increase - nauseous but this goes after a week . 

I need to make some adjustments with work and need a different car as mine is too low and I have a job getting in and out sometimes . My PIP forms arrived - war and peace . Apparently no support worker now for my area so will get my husband to help me . They took ages to come and then have to be in 7th may . Not a lot of time . Some nice reading over the bank hol ! I can't seem to make decisions that easily now and sometimes don't know where to start with things and then get stressed . Have felt low this week and feel like running away from it all . Feel sorry for my family putting them through this . 


#10

Morning Maddison.    I changed my car.  I had an old slk which I loved but looked ridiculous getting out of.  I now have a fiat 500      I work full time but have been on sick for three weeks.   It's hard to work and get in all the rest and exercise we need isn't it.    X.  What would pip be for if u r working ?   I have wondered about any benefits.    X. I will let u know how Wednesday goes. And if meds alter.  Have a good week x


#11

Hi Karen did you get an automatic ? Will be thinking about you wed . 

I was told to apply for PIP . Apparently you can apply for it if you are between the ages of 16 - 64 and have a long term illness / disability whether you are in work or not . It can help with healthcare costs . I don't know a lot about it but there are people on the forum that do . When I looked at applying for disabled railcard it looked like you had to be receiving PIP to get one . Have not really looked into anything much . Was thinking about trying to get a disabled badge as nowhere to park at work and have to park a fair way off and walk . I was dreading the winter but luckily it's been mild . Scared of falling and my walking and balance varies x


#12

Hi Maddison

                    You can claim PIP if your working or not but it could make a differance what rates you get. My wife didnt claim for the first year but she started claiming in October 2014 we got the enhanced rate for both,and back dated from when she claimed.She has stopped driving and is now starting the process of finishing work having been on the sick since October. I have also finished work to look after her and i claim carers allowance good luck with your PIP claim and dont forget its how you are on your bad days

                      Billywhizz

 


#13

Hi Billy Whizz thanks for message . I'm sorry your wife has been feeling so unwell and you have had to make some big changes . I really hope things improve for you . Best wishes M. 


#14

Hi Maddison

 wry strange appointment with movement specialist.   He disagreed with neurologists probable Parkinsons and said he could not confirm this clinically today through his assessment.     He wants me to stop all my Medication and return to see him in six weeks to re assess.   Very odd, but good.   He is asking a specialist to re look at my DAT scan in the meantime.

i felt a bit like a fraud.    I have been very anxious thinking he would confirm her assessment and worried about the  cortibasal comment on DAT report !!

feel in limbo x

 

 

 


#15

Hi Karen . Was thinking about you today and hoping you'd got on ok . It sounds like he's being very thorough . It's good that he is getting a specialist to look at DAT scan . I know they need to be read by a very trained eye - someone that has had lots of experience at reading them ( sounds obvious I know ) or mistakes can be made . They should only be used in support of clinical assessment of symptoms . How do you feel about stopping the meds ? I suppose he wants to get a really true picture of symptoms . 

Don't feel a fraud . You are certainly not . It's a very worrying time and your symptoms are real . X


#16

Morning Madison

thank you for your kind words 

yes it will be good to come off medication,   It feels like such a roller coaster being told one thing and yesterday something completely different.  I had not even thought that would be an option.  I feel like he thinks it's all in my head and needed to check with my husband after if I had gone mad.    They wonder why you are anxious but it's horrible not knowing.  

Hope you are ok, keep me updated , what car are you thinking about. .?

take care x

 


#17

Hi Karen how are you getting on ? Did you stop the meds ? Or have you got to wean off the ones you're on ? Have you been feeling ok ? 

I am ok . Have just felt really tired and pain right arm and head still a problem .My daughters birthday today and she wanted to go to petticoat lane to spend birthday money . We couldn't get parked anywhere so had to walk a long way . There was one disabled spot right by entrance to market but I haven't applied for a badge yet so couldn't park there ! Would've made life a lot easier ! What car have you got ? Is it an automatic ? X


#18

Hi Maddison

i am off the medication completely- I weaned a little a day

in Some ways I feel better ie not so twitchy but I feel stiffer especially my lower back.  My right arm feels heavier earlier in the day and my right eye also a problem earlier ie it feels turned but looks normal and blurry.   Don't quite know what to do next- I am trying to ignore myself for a week or so and see what happens.   Out of interest have you ever had your vitamin D25 checked?   Mine is low and has been for several years, i take meds.

my car is a Fiat 500 manual, I love it.  Great to drive and park.   Have you informed your insurance and DVLA re your diagnosis.?

Hope you have enjoyed the nice weather,   Feels like winter today.

it is nice to talk to you, keep in touch

Karen x

 


#19

Hi Karen glad you are ok-ish .

I am on vit d as my levels were low and PD nurse thought pain may be bone pain . I checked my blood pressure and that was ok .Gonna make appt to see gp I think . Seeing neuro in aug . 

Yes informed insurance company and it was fine and DVLA . Been put on three year license .losing my license would be awful as I need it to do my job . Take care . Hope these six weeks until you see movement specialist go quickly x


#20

Hi Maddison

been off Sinemet for a week tomorrow.   Feel better in that I am not so twitchy however arm heavier and vision in I right eye continues to feel blurred with headache.    Went to opticians today and eyes normal including muscle etc- very odd as it feels as though eye is turned.     Arm heavy from first thing in morning and back feels stiffer  but otherwise nothing else.     I find it interesting you also have low vitamin d

have you decided on a car yet?     How are you?   Have you tried the yoga yet?

Karen x