Advice from mixed up


#1
hi everyone i wondered if anyone can help with a few questions, in 2008 i had a severe band to my head i worked in a mental heath ward a job i loved for 7 yrs in 2009 my head started to turn to the left which is now sill for a while i take 20 pills a day and have botox in my neck, ive been diagnosed with dystonia, after reading this site im so mixed up.ive had hand tremors years, i had a operation on my bowel, as ive suffered with constapation for years im 45 and been finished from work under ill health,ive asked to be refured to gyni as im wetting myself at bedtime im up at least 8 times ive been getting up late as im so tired and from my groin area to my toes im in pain i have to get my hubby to rub my calfs as i cant walk, my voice keeps going and i cant talk, i thought its was due to botox i see my neauro specialist on 27th of april,i cant used my left arm i cant cook due to memory loss, i need help getting out of bath, im coughing flem up lots of it (sorry) im really confused i know parkinsons and dystonia are alike but i feel ive been diagnosed wrong can anyone give me advice im so confused thank you.

#2
also can a bang to the head bring parkinsons on ? or is it just there waiting to happen.also my gran had parkinsons.

#3
Hello mixed up. I am not surprised that you are mixed up. You seem to have such a lot going on.
Dystonia can be a primary condition in it's own right, or part & parcel of pd (either the pd itself or a consequence of medication)
I cannot tell you if a nasty bang on the head will bring on pd. The current thinking seems to be that a person may be genetically pre-disposed to develop pd and such trauma as an illness or a head injury or other envirnmental factors such as exposure to certain chemicals , might be a trigger.
I suggest that you write down all your concerns and hand them to the neuro specialist. If at all possible have your husband with you during the consultation.
I know that April must seem a long time away, but hang on in there. It will come around sooner than you think.

I wish you all the very best

#4
hi there,

sit down with hubby. You talk, he writes. Take it with you and make yourself heard.
Above all, keep talking, it really helps.

mrs.t.

#5
hi mixed up

im in a simular position to you.i had a head injury 25 ish years ago.ive had pain since sharp chest pain,muscle pains everywhere especially calf muscles,toes hurt,voice is low,mobilty on one side is slow ,righthand tremor,swolllen salvia gland.and forgetful.everything stepped up a level last nov and what i thought was arthritus is pd.wait for dx in april,take medication and try to keep mobile.also live for today.try and do now what you planned for in the future.i leave 5 mins to reflect on my situation before i go to bed which is normally about 2am.
try to keep positive.all the best.twins99

#6
hi mixed up
what you cant do let your partner do dla form etc.but when youve got time have a go.it will help you to keep mobile.i went to a electric razor but found i was losing mobility in my right hand quicker so ive gone back to a manual one.twins99

#7
Hello Mixed up,
No wonder you are so mixed up it must be very stressful for you both, do you think you could get an earlier appointment with your consultant if not perhaps it would be worth it to pay for a quick one and put your mind at rest. I know that there was a shortage of Neuro consultants in this counrty, do you belong to Benendon healthcare soc and if so they have been very helpful to us before. I ask this as many people in government imployment belong to this society.
Someone else I know did a video of themselves and took it to the consultant perhaps your husband could do that if you are willing.
I do wish you all the best
vivian

#8
thank you all for advice, ive been in bed all day as my legs hurt so much im on lots of medication, here goes clonazapam, lansoprazole, tramadol, trihexphenidyl, lustral amitriptyline, baclofen, ataraz, and oramorth when needed i have a soliceter as i think the bang to my head caused it ive seen a professer and everyone says dystonia because of my head turning to left the other symptons started in the last month i dont want all the meetings and docs to say parkinsons i dare not tell my hubby as its caused so much trouble with my neck its changed our lives so much my whole family are suffering with my dystonia,my husband keeps asking why my legs hurt i told him i didnt know, i was falling over a lot last year,loosing my balence i went for ears checking, and was told i needed hearing aids, they put everthing down to dystonia, ive not fallen since having them fitted, i dont want it spoiling my claim as its been going on 2 yrs if i get told on 27th that its parkinsons ill fall to pieces ive only just come to terms with dystonia, but things are changing my voice i keep loosing it i cant answer phone cos i cant speak, my legs hu8rt and i have problems going to the loo, do scans and mri scans prove it does it show up.?