Hello all! Here's a little me story


#1
Hello I'm mid twenties and been having some issues for a little while now, I'm seeking some advice and help from others. Over my life i have always been known as the forget full one, the one who can't understand sometimes how things are being said. Also there has been a constant joke about how I always have the need to use the loo, no matter where we are what we are doing, there has been a somewhat injoke with my family and friends about me needed to go so often. I have also had a lot of comments passed my way about how sad i look wothing the last two years i have been told i have worlds best resting angry face. A ex partner of mine used to say all the while are you okay you never look happy or smile much. I would be like I do and I am happy I'm fine. Then in September of last year I went to bed one evening and normally I fidget can't keep still and my legs have always been known to be jerky or kick in the night. I am known for talking in my sleep and having the most vivid of nightmares. I also have suffered with cramps in my sleep to the point where I'm awake and crying at the pain. So anyway last year I went to bed and about ten minutes after being horizontal I noticed what felt like an earthquake.. thought nothing of it and went to sleep. About a week later the same thing happened again and I noticed it was me and no matter how I moved or wriggle this tremor would not go away. So I would get up and get a glass of water and then prop myself up in bed and fall to sleep upright. About two months after that I noticed a tremor in my left hand consequently I now have it in my left foot and right hand too. There are a lot of other things going on too, I run a business with a family member and my memory is horrendous all of a sudden I'm struggling a lot with my mood I notice that I can be quite brash and sharp sometimes. Which isn't like me at all. I also noticed whilst in the evenings I think I see things like a bug on the wall or a figure whilst I'm driving at night and then as I draw nearer my attention is still trying to figure out what it is I saw. Near my periods my mood becomes quite agitated, as any woman would but I find I'm so sharp to the point I could actually upset someone without knowing. I also struggle swallowing food and make sure I have a drink at the ready. I get involuntary movements with my arms and legs and if I have been sat or lay in a position for a while my body is rigid and painful to move. So I went to the doctors with my concerns and told them what I am experiencing and I had an Mri and also saw a neurologist the result came back that they think I have Functional Neurological Disorder. So on my return to the neurologist I asked him if he could tell me for definite that he knew this was not Parkinson's or ms as I am aware all three can share similarities. So in the meantime I have had councilling to which they think I'm one of the most active and outgoing people they have met as I have altered my diet and taken up swimming and badminton. I see my friends and family as much as possible even though they are all aware of what I am going through and I have people guessing what word I'm trying to think of as I freeze and erm a lot with when I am talking. Which can be very frustrating and then I end up in a vicious circle of erming a and freezing. I also have problems with my balance and coordination I don't have a right arm swing as I have noticed when walking as Well as short fast steps. I seem to need coffee asap in a morning to help kickstart me although I'm normally an avid tea drinker. I have been prescribed mirtazapine and have been taking them about 5 months now I came off them two weeks ago as my tremors had settled n thought I wonder what I'm like off these and wow I couldn't sleep Thule internal tremoring was so bad and externally too. So I'm back on the mirtazapine and they have calmed again still visual and still thier but calm and my hallucinations have disappeared again. I need help support and advice as I am awaiting results of a lumbar puncture and I know deep down something is wrong but I do not feel like my neurologist is taking me seriously. I have tried to look for some patterns within my family and remember always taking the micheal out of my father for always looking angry and I would get told off for this, now I am older I have noticed one of my grandparents has a tremor in thier foot and is very set in thier ways and also has a very masked face. Can anyone shed any light for me please on whether I should just accept that I'm mentally Ill, or whether I should continue to dig for answers.

#2

I have PD, but no-one else in my family that I know of has ever shown signs, so looking for patterns may not necessarily be helpful.

PD has many different symptoms and everyone suffers with combinations of them.  My main problem is cramping legs - particularly through the night when I wake because I am writhing about in the bed.  I also have vivid dreams when I am shouting out and am woken by my husband.

Worst of all is the feeling first thing in the morning when my cocktail of medications has yet to take effect - my feet cramp so badly that they become completely distorted - clubbed - it is agony and can only be relieved by massage or in the worst case, Diazepam.

It sounds as though you need to be seen by a PD specialist who can confirm, or otherwise reassure you. If you are not happy with the Neurologist you are seeing, then ask to see an alternative one - you do have choices.  Keep hold of the fact that the only one who knows your body is you and you are therefore in the best position to judge when things dont feel quite right.

Keep on it until you are diagnosed or given the all clear.

Good luck and hope it all works out for you.

 


#3

Hi Sassielady,

 

For what it is worth you sound perfectly sane to me..  If you opt  to ask for a second opinion and , as several of your symptoms seem to point to PD (which is why you posted  here),  I would make sure that you see a neuro. who specialises in movement disorders.  Although the symptoms are  PD  are many and varied, PD comes under movement disorders..  As a young woman, even in 2015 one is liable to be patronised.  I read once that even specialists in other fields find neuros. can be somewhat arrogant.  In case it fits your case, "motor fluctuations may be up to 50% worse for a few days before and during menstrual periods" (Daily Telegraph Guide to managing PD)..  Try the helpline above. 

Unfortunately for you, because PD is rare in people of your age they need to be even more thorough in ruling out other more likely causes before they can come to a diagnosis of PD which is made on a clinical basis.. There is as yet no foolproof bloodtest or other biological .marker.

I hope the foregoing ragbag of info. will be of help to you

 

All the best


#4
Dear Oxford Gills, Thank you so much for getting back to me, I feel quite at a loss to be honest. If I don't get any sort of answer soon I will take my concerns further and find a different neurologist. It's just so hard to believe that when someone is a trained professional, and you start to question them it can seem like you don't believe what they are saying. All I got was a letter through the post saying you have FND and to look on the internet.. to which that angered me greatly. So I will keep you posted about how I get on and the results of my lumbar puncture they should be today or tomorrow. I'm so sorry that you suffer so much! I am quite an empathetic person and wish there was a cure for everyone out there suffering with loss of motor control. If my diagnosis eventually comes out as I suspect nothing will stop me from trying to maintain my life and opt to help woth research programmes. Thanks so much for your response. If you ever want to vent or talk please do not hesitate to do so. I'm a fairly busy lady but I do get the odd hour to myself. Take care Sass!

#5
Hello EileenPatricia, Thank you so much for your reply. It's really nice to be able to try and understand what is happening to me by talking to others actually post diagnosis. I feel like I can't talk to my family and friends as they all believe that this is psychological. Which is really frustrating as I know they are worried. I have tried so many things to prove to them this isnt pschological its all happening i have been challenged mentally ive had people watching me like mum n dads friends to see if im any different and i just cant make it stop. The tremors affect my voice neck hands and now my left foot too. My balance is appallingg and have even brought myself a umbrella type cane so people think I just have an umbrella. I just feel because I'm young they won't take me seriously. I have tried explaining all this to the Neuro I'm under and he just recommended seeing a psychologist. But they don't think it's pschological. I just feel quite hopeless to be frank. Thanks for your advice though I will take heed and go forth lol. May I wish you all the best too. And thank you so much x

#6

Just one piece of advice that should help you.  When I went for a lumbar puncture I was in an empty ward when the doctor arrived to perform the test.  Having successfully completed the procedure he promptly left  and a nurse arrived.

Within 20 minutes I was told that I could go home as the test was complete. I just about made it out of the hospital and to the bus stop, luckily with my husband, before the mother of all headaches hit me.  The only way I could relieve it was by laying across the back seat of the bus till we got to the Park and Ride.  My husband got the car and loaded me in - laying on the back seat.

To cut a long story short, I spent the next two weeks flat on my back.  Any attempt to get upright caused a headache that I will never forget.

I since learned that you should lay very still for at least four hours following the puncture to allow the fluid in your spine to settle and the hole created by the needle to seal itself.

I am not trying to frighten you at all - just make sure that you have the correct instructions just in case you are told you can go shortly after. Make sure you lie still for at least four hours before leaving. I would not wish anyone to go through the two weeks I had.

 


#7

 

Good lord i'm glad i didn't have a lumber puncture, what part does it play if parkinsons is suspected?. surely this is why a mri is used?. sounds like sadism, but then nerve conduction tests running a current through your knee and bicep and moving it is as well. but that is too dismiss Motor neurone disease?.


#8

Hello SassyLady

I don't really have any advice, but I just wanted to say I emphasise with you, and I am so sorry that you have to go through this. I was diagnosed in my mid 30s after 10 months and the waiting for the diagnosis and just knowing that something is wrong but no-one can tell you what was awful. I started thinking I was imagining things especially my exhaustion.

You sound like you are coping really well. Stay strong. I hope you get a diagnosis very soon.

Butterfly lily

PS I was clinically diagnosed and then sent for a DAT scan to confirm.


#9
Wow! I already had it done three weeks ago now and I am still awaiting result. I lay for an hour and spent the next day horizontal then I have been back at work since with on and off headaches but they advised me to keep my fluids up. And with running a business and bills to pay I had to get back to work so I have just been carrying on. It's not a present experience. I had the Mri a while back which showed lesions and white and grey matter in the right parietal lobe but apparently my brain is healthy.. so i just don't know what's happening Sorry you had such a traumatic time with your l.p. Xx

#10
Hello butterfly Lilly. Thanks for getting back to me. Yeah it's a really frustrating time for me because the amount of times I have had the response they think it's psychological I am starting to wonder and believe could it be then I look at all that's going. on and I am reassured how can this be. How can I be like this when all I am trying to do is get in with my life. I feel like my life when I should be in the prime of my life is being put on hold. I am stating as positive as possible eating healthy i bought a nutrabullet and i have flaxseed shakes and eat as healthy as possible i have taken to using my wii fit and trying the yoga and coordination games on their even that is twlling me im very unbalanced. I'll get there. I just feel so sorry for everyone with diagnosis and want to help everyone maintain a positive attitude. It's hard sometimes but I have resorted to meditated sleep music to help me off to sleep at night too. I also had sebherroic eczema as a child and still get the odd spouts of it now. I have always had a low blood pressure and in 2006 when I was going through my exam year kept fainting and passing out the doctors couldn't figure out why but they put it down to exam stress. I just hope to get a definitive answer sooner rather than later. Thanks again to all of you for commenting on this and giving me some kind of clarification that I am not goingcrazy. May you all have a restful night Night xxx

#11

Dear Sea Angler

At the time, the consultant wasnt sure whether I had MS or PD so they did a whole raft of tests to rule out the MS.

I also remember the electrical tests on my feet and legs - they were also very unpleasant.  Again, these tests were to rule out other diseases before they made the diagnosis of PD.  I did eventually have a DAT scan which also proved PD.

 

 

 


#12
Hey everyone, I have had my results back now from my lumbar puncture and I have been told that I'm all clear on banding proteins and everything with that so I have told my family and all they can say is I need to go down the psychology route which is fine and I'll do it. But I'm left feeling somewhat confused still as I feel like changing doctors surgery and telling someone new this is happening to me I get tremors stiffness rigidity the ifn ightmares the cramping. Hallucinations when I'm off the mirtazapine at night whilst driving. I am not anxious or depressed merely frustrated and what's happening I have tried light n sound wave technology I have tried doing everything I'm normally scared to do. I have been on a date or two recently I go out I work i attempt swimming which my tremors are worse after any sort of exercise my balance is horrendous I use my Wii fit I feel right at a loss today. But I'm over the moon this is not ms. Can someone on here please help me. I do everything that I love and makes me as happy as possible. If this is psychological itwould be there sometimes and not other. whaWhat should I do

#13

Hi Sassylady

i can understand your frustration  , i think and this is just my take on things its not a medical opinion , you say your mid twenties , most neurologists would not immediately consider parkinsons  as you are so young but saying that younger people can and most certainly do suffer with pd, i think at your age it it more of a case of ruling out other possible conditions before coming to a possible pd diagnosis


#14
Thank you x