Not sure I should be here


#1
Hello everyone,

As the title suggests, I'm not sure I should be here, I havent been dx with anything yet but am having quite a few difficulties that many of you seem to be experiencing.

I will give a bit of info so it doesnt seem like I am a completely gatecrashing your forum...

March 2012 I noticed I couldnt smell things as well as I used to, food tasted bland but bearable.
By July I developed parosmia, by November I had to give up working as a fitness instructor as my health rapidly declined.

I am experiencing a tremor at rest in my left arm, I have some kind of eye tremor in my left eye.
I am dizzy ALL the time and have vision problems. I can't walk well as I have balance problems and cant look around me, I have to hold on to a wall or person to walk.

I cant drive anymore as it takes too long to process everything and I'm scared I might end up causing and accident, driving at night is the worst as the lights seem to effect my vision quite badly.

I cant get up from the settee in a "normal" way, I cant turn over in bed comfortably.

I have stiffness in my neck and shoulders, I often find I am sitting very tense to try and stop the dizziness and often sit in one position for the whole day (aside from making numerous trips to the toilet)

I cant judge space around me very well and struggle a lot with stairs especially coming down them.

I move about like I am 80yrs old...

I struggle to chew and swallow food, my face seems to be constantly tense and it aches when I attempt to move it. My speech is slightly slurred and very quiet.

I have to use the toilet more times that I can even count, sometimes I struggle to empty my bladder completely and have to go as soon as I feel the urge.

I get confused quickly, my memory is poor and this last 2 weeks I am finding it more and more difficult to hold a conversation.. I cant start a conversation anymore, it is like my brain cant figure out what to say to people, I've noticed that I cant keep up with other people, by the time I have figured out what they are talking about they have moved on to another topic..

I cant follow the television for 1)I cant keep focused on constantly moving objects and 2) because I cant keep up with what I'm hearing!

People have said I look depressed or sad, I dont feel depressed (and I have suffered with severe depression many years ago) I look this way because it takes too much effort to put my face in any other position.

I recently noticed that I am indifferent to everything... It's almost like I dont understand the world any more...

Making decisions can take a whole day, getting ANYTHING done can take a whole day, I feel like I just cant make my body do what I want it to do, I am constantly talking myself through things.

Nothing is spontaneous any more, getting dressed is a massive ordeal, in fact doing anything takes so long.

I jokingly said to my OH if I was left to my own devises I wonder how long I would sit and do nothing, its not because I am lazy or cant be bothered, its that by the time I have convinced myself I have to get up I then have to force my body to cooperate and nothing gets done at any speed any more, I cant just "nip" anywhere any more, I find that I am breaking things down and doing them in stages. Nothing is fluid.

My sleep is disturbed as it seems I have also developed restless legs too, this makes me want to pull my hair out! I have never felt anything like it before and cant get to sleep until I am comfortable, but I cant keep rolling over until I feel comfortable like I used to, this is also done in stages.

I cant lay down and watch tv any more, if my eyes arent facing forward then I cant see properly, if I am facing forward and someone is talking to me from the side I cant see them properly, I now have to ask people to move to where I can see them if they are talking to me and even then I cant keep focused on them for long and this makes it look like I am rude.

I basically feel like an old person trapped in a young persons body.

Because I cant swallow or taste well I have been given fortijuice drinks as a food replacement.

I have had a camera up my nose and throat as it was originally thought I had a sinus problem or polyps, but nothing showed up, I have had numerous blood tests and urine tests with "no action needed" results and a brain mri scan also showing a healthy brain.

A ENT specialist informed me that with all these other symptoms it is pointing to a neurological disorder.

I was admitted to hospital mid Nov and saw a couple of neurologists who did a few physical checks and with some abnormal results sent me for the mri scan.

I have an appointment with the neuro's again next week.

Now from what google tells me I am quite young to be experiencing many movement disorders... But... I just want my life back...

#2
Hi, you will find people responsive and supportive, so no need to worry. I can certainly identify with some of your symptoms,the uncertainty must be very distressing for you, I do hope you have a neurologist you feel confident in.

You seem to be quite young, and certainly the local group I go to does have a young onset group, where I'm sure you would also find help and support. If you aren't taking medication that might also improve things for you.

I do hope things go well when you se the neurologist and you find help and support. With all best wishes.

#3
Hi
it does rather sound as though you are in the right place. I wouldn't want to preempt your dx. there are quite a few 'parkinsonian' conditions that can be difficult to separate but the most common by far is PD and for most people treatment is effective. the loss of sense of smell and tremor point towards pd but hopefully you will get a definite answer next week. whatever the dx please let us know how you got on.
best wishes
t

#4
Thank you both for your replies.

I forgot to say I am 35 next week (day before my appt!)

This will be my first "real" neuro appt, the other one was a brief visit while on the acute medicine ward.

I am not holding out much hope for any answers next week, just something to make moving around a little easier would be nice because atm I am just about housebound and am becoming a pretty useless parent and gf!

Its quite frustrating when you are used to being the responsible and reliable one and the problem solver to find yourself having to rely on others and being unable to function properly.

I know its not nice for others to see either and I can see they get frustrated with me which then makes me feel bad so I try and do SOMETHING and that usually ends in a fiasco.

I have read some stories on here and other sites and see that if I do have PD then hopefully I can start to get some of my life back.. I doubt I'll be fitness instructing again but managing a walk to the shop would be nice!

x

#5
do you mind if i ask how long has it been since your first symptom appeared? if i'm being too nosy just ignore the question.

#6
The loss of smell started in march, but everything else only started mid November, which was why I got admitted to hospital. When I left the hospital I hoped that within a few days I would go back to normal.

I've read a few things that say many disorders dont progress quickly, I'm not sure if what I'm experiencing is progressing quickly. I know its not getting any better, I seem to be at a stand still where movement is concerned that hasnt got any worse or better but the swallowing, vision and facial problems are becoming really difficult to live with also the fogginess in my mind is really hard to work through.

I am scared that I dont get help with some of it soon I will get worse.

x

#7
hi Missiem
it does sound a bit unusual - hopefully the visit next week will be useful either in treatment or further tests.
It must be very scary. Please let us know how you get on.
If you need professional advice there is the helpline. For anything else someone will respond here as best as we can.
good luck
t

#8
Hello Missiem
I strongly think you are at the right place, I am not trying to preempt any
result you may receive its just you exibit so many Parkinonisms,and even if
you have got PD don't let the sky cave in on you there are many very effective
drugs to combat Parky and lots of support available,consider yourself in a war
of attrition, you are young I was 49 and fight every inch,when you find yourself
on a drug regime that suites you, volunteer for PD research you can provide invaluable information to the people at the forefront of the battle against old
BLACKHEART, "my description" whatever the outcome you will be more than welcome here where you will make lots of new friends who will guide and support in huge measures. Kindest Regaards fedexlie

#9
Thank you :)

After posting here and reading other members threads I am feeling a little more positive about things today.

I think because things are so bad for me at the moment I would actually be relieved of a dx of PD, I see that many of you are functioning better than I am with various medications and I know that probably my family wont be as relieved as I will be but I'm sure they will come to terms with it.

I will let you know what happens next week and thank you all for your replies

x

#10
So yesterday was my neuro appt.

I have to say it was a complete fail from the moment we walked in to see him.

He looked at me like something stuck to the bottom of his shoe, he asked me a handful of questions..

Why are you here, what did the hospital do when you were admitted, do you have children, how old and what does he do and are you married...

Did not ask any questions about my symptoms, nothing about my daily life, nothing about what I eat, NOTHING!!

Then went on to do about 4 physical tests, and when I couldnt take my shoes and socks off and sit on the couch as quick as he wanted to he got irritable, when I couldnt open my eyes wide he shouted.

I struggled with all the tests.

He then went on to tell me he didnt know what was wrong and he would send me to speech and language therapy, physio and psychiatrist to manage my stress and anxiety. At this point I broke down because I am not depressed or anxious.. I am frustrated that at 35 my quality of life has been greatly reduced!!

He told me I could get a second opinion and he didnt have to explain to me why he'd come to this conclusion and then went on to tell me he had wasted enough time and he needed to see other patients.

I was in there the whole of 10 mins.

I feel absolutely disgusted and in utter shock, I had waited 3 weeks for this appointment, I had been pinning all my hopes that yesterday I would be leaving that hospital with something positive and on the first steps to getting my life back.

But no. I am back to square one.

#11
And when I said I was not happy with what he had said and the way I was spoken to and tested and I wanted to see someone else he told me he would be referring me back to my gp and not sending referrals to speech and language or physio or psychiatry...

Never in my life have I met a medical professional like this man.

#12
Hi missiem,
I’m really sorry to hear what you went through yesterday.

I passed your post to our helpline team to see what they suggest. The said that if you want to complain about the consultant’s behaviour, you can contact the Patient Advice and Liaison service. You can find out more about this here: http://www.pals.nhs.uk

But, I suspect that you’re probably more concerned right now about finding out why you’ve been having these symptoms. I’m not sure what your relationship is with your GP but our helpline staff suggested that you make an appointment as soon as you can with your GP and ask him to make another referral.

Hopefully, this time around you’ll get more balanced and helpful information. And be treated with more understanding.

I hope it helps.

Ezinda

#13
Hello - I was shocked to hear your story - I do hope things get sorted out for you. Your first post had me sitting here with my mouth open - you could have been describing me - but all these things have taken seventeen years to manifest themselves in me - not a matter of months like you. I was diagnosed when I was 41 but didn't start medication straight away. Even now, I try to keep as low a level of tablets as I can.

The manner of telling me that I had Parkinson's was not very nice but I certainly wasn't treated as insensitively and with the disrespect that you were.

There are a lot of kind, knowledgeable people on this site and I'm sure you will get the help and support you need right here.

Lin
xx

#14
if you have some spare money i would get a private consult with someone reputable and specialising in pd as a one-off diagnosis.

#15
Thank you all,

I saw my GP today and she will refer me to someone else after she has seen his report... I know I'm going to have to wait a good few more weeks maybe even months before I see any one else and I wish I did have enough money to see a private specialist.

I wish that things would ease up a little bit so the wait doesnt seem so long..
All I want is to be able to move around a little easier and enjoy life again without this constant uphill struggle.

I have been practically living off fortijuce drinks since november and on monday my gp told me because they were so expensive she couldnt prescribe any more unless the neuro said so.. no chance of that, so thats my food out of the window too!

#16
How awful for you! What a horrible man.

Are you going to get a second opinion?

#17
You might find that a one off private consultation is not as expensive as you think. I had one in the spring, when I was diagnosed, as I couldn't bear to wait any longer and it was the right decision. I think mine was about £250 and there was no problem then transferring back into the NHS.

#18
jellywoman speak truth.

#19
Hello all, I thought I would update you and see if any of you have any experience or words etc about where I am going next.

After numerous visits to the g.p, I finally get to see one of the best g.p's Ive ever known, he reads the neurologists report and tells me that he doesnt agree with most of what he put, but does strongly agree with one recommendation....

That I get referred to the PD and movement disorder clinic in Derby.

Now this is a big relief for me, but I dont understand why no one had mentioned this to me before.. (I saw the neuro on the 10th Jan and have seen the gp at least 3 times since then and this has never been mentioned, also why didnt the neuro just say this to me on the day instead of dismissing me like I was a nutjob!)

Has any one ever been there, what am I to expect..?

Thanks all x

#20
excellent news but unbelievably bad treatment.