Update:
Just been to the GP who was great, we went outside his room to walk in the corridor so he could see what was going on. He commented on my stiffness and how I'm slow to move and get up from the chair. Got a referral to who looks like a top movement disorder guy but have to wait until the 6th September as he is on holiday - bit of a long wait (for me, I'm quite impatient) but I feel better for being seen.
Thanks again for all your encouraging comments x
Hi Littlewren,
That's good news then, it always helps when someone medical actually listens to you. 6th September's not too bad really. Only a month. Sometimes it takes a lot longer than that to get an appointment. At least you're "in the system" now. But I know what you mean about being impatient - the not knowing bit is often the worst.
Thanks Daffy, I know, I just thought in my head, I thought I could get in next week. I need to try and forget about this all for a bit and keep in the back of my mind that the guy I'm seeing seems really good (from what I've read). I still feel like I'm in a funny dream though, silly lazy arm, what an idiot...
Littlewren you are far from being an idiot, you had the good sense to come on here and you have had good, positive responses to your thoughts from people who are or have gone through what you are. You have been given the confidence to face your demons head on and now you've got an appointment in September, good on you. Unless my DBS battery runs out before then, my next appointment with my specialist hospital isn't until January but this is just a routine one. Remember to come back on here and tell us what your specialist has said and recommends going forward.
I'm just updating this, kind of to remember in the future if I need to. As mentioned above, I'm not in with the movement specialist until two weeks or so but I've been using the time to make sure I get all my symptoms down and in year order then I can offer as much as possible, including all the other conditions I've had ruled out.
Since I've posted last, I now have a new symptom of quite marked stiffness in my left hand and wrist. I can still use it but it is on a different speed level to my right. There is no pain, but it just feels odd, actually, it feels like there should be pain to justify the limited amount of speed it has. It feels like I have had an insect sting if you know what I mean or it is freezing cold or I lay on it funny - but without any other type of sensations (so not numb/tingly).
Hope everyone else is doing ok and I'll be back to update once I've seen the consultant, the wait seems endless!
Hi Littlewren,
All of the things you mention in your very first paragraph I can relate to over many years, I also have Atrial Fibrillation which is a cardiac condition, I went for many years like you with the professionals not knowing what was going on, until I was diagnosed with PD in July this year, I then realised from talking to the wonderful people on here it had been my problem all a long many visits to my GP came up with nothing, it was my RA nurse who finally picked up on it.
Good luck C xxxx
Hi Clemmo - thank you for your message. Sorry you had to go through the whole pillar to post and back again with the medical professionals, I don't want to be negative as I am trying to stay upbeat but it is quite draining, definitely feel your pain there. Hope your AF is managed successfully, I can't imagine what living with that is like, my palpitations on standing and eating are bad enough (and I occasionally get the arrythmia icon on my BP read out) which is usually when I feel particularly yakky. Midodrine helps lots though, for which I am thankful.
May I ask how old you are? Or perhaps I should rephrase, do you have young onset PD? If so, Do you think that your delay in diagnosis was related to age? You really don't have to answer that if you dont want to! xxx
Hi Littlewren,
I am 70 years young, and now know after what I have learned on here that I have probably had PD for as long as 25 years, being diagnosed over the years with lots of different conditions that didn't need a positive pathological result to determine them as many of them can be classed as symptomatic, Sjogren's syndrome fibromyalgia, the only positive result I have had was for ACCP positive Palindromic RA.and the Afib that is mostly well controlled but certain foods and infection seem to trigger it as did the Madopar the neurologist gave me first up, start on simenet this week (fingers crossed)
The other significant thing is 25 years a go I started with a problem with my bladder and was introduced to self catheterisation 5 times daily which I have been doing for 25 years it becomes a way of life. at the time tests showed that my autonomic nervous system was not functioning properly so I wasn't getting messages sent to my bladder that it wanted emptying consequently it stretched and stretched until it was 4 times the size it should be and bladders don't go back they are a bit like a balloon the more you blow it up the bigger an floppier it becomes.it was only when I started with the tremors and the extreme fatigue and weakness, that I realised something more was going on, and thanks to the skills of my RA nurse finally got to see a neurologist.
On a lighter note I am sure you can picture the scene I use my catheter in a standing position which I empty into a sterile jug before disposing of it just recently I am getting half way through the task and my right hand and arm start trembling as i say I wont draw a picture but I am sure you can picture the scene you gotter laugh haven't you !!!!!!!!!!!!!!!!!
Good luck I hope you get some positive answers C xxxxx
You have got to laugh Clemmo, yes! Bless you! I had a catheter when I broke my leg a few years ago, all the morphine was jiggering everything up, you are very good to manage one daily, especially with a motor condition.
Thank you for sharing your story, I really appreciate it, and yes, my dysautomnia kicked in around 15 years ago, along with what I have diagnosed as narcolepsy (not sure I have classic narcolepsy, I have always though it was secondary to something else) - I have such vivid dreams these days, I honeslty feel like they were real when I wake.
Anyway, I shall be in touch when I've seen my movement chap, how the time goes so slowly when you dont want it to - and speeds up when you dont? xxx
Hi Littlewren,
Some of my reasoning goes back 17 years or more when I first started to have strange things happening
for about 2 years in the early stages I started with this strange thing that if I didn't eat between breakfast and lunch I would come out in an itchy rash all over my body and within 30 mins of eating it would go away, the clinicians were dumbfounded and took me into hospital and starved me for 48 hours to see for them selves they took photo's and monitored me I was also getting postural hypotension they couldn't work out why it was happening, I ended up seeing all sorts of different clinicians and was finally put in the care of a consultant microbiologist who tested me for every endocrine condition including Addisons disease I had instruments pushed into every orifice you can think of including some I didn't know I had. his conclusion and I quote there is something very strange going on here there is definitely something wrong but it is yet to show itself in any recognisable form,, and the rest is history I have lived with the symptoms all this time and have only started getting anything they could diagnose when the Afib started then the RA and now the PD which I suspect had been the problem all along, and so does my Neurologist.
That is just one of many strange symptoms I was experiencing including problems with my gut which they diagnosed as GORD
Just a bit of useless info but many of my symptoms mimic yours. in the early stages. C xxxx
It isnt useless info, not one bit, in fact, I've had a GP say those exact words - 'something is going on, it just isn't showing itself in its explicit form yet' - obviously, I havent had a diagnosis yet and this may not be PD but I've always known it has to be something, I think the person living with subtle changes in their body does know something is quite wrong. The GP asked me when I thought the arm swing went, which is an impossible question to answer, but I am curious to know when it did. As I've mentioned previously, I only noticed becasue I wore a sweater or t-shirt without front pockets and we had a mirror at the end of a walkway - even this observation wasn't massively obvious and took a good few days to settle into the brain. Also, I have the diagnosis of PoTS but it is more akin to orthostatic hypotension in that I think my heart rate eventually rights itself, whereas true PoTS it continues to rise - I havent had a tilt table test as the cardiologist diagnosed it without going off history and his own 'poor man's tilt test'. If I wasn't on the midodrine, I'd be a mess everytime I changed position and ate, even non-dense foods trigger it so I am so thankful for the medication.
Did your arm stop swinging? The top of my arm is starting to tremor now and I have a definite shake on the left hand if I hold them out, nothing remotely like pill rolling though. My shoulder keeps wanting to move up too, I can't stop it unless I consciously pull it down, not particularly painful, I keep thinking about it as having joined a breakaway group and formed its owned republic, it definitely isnt playing by the same rules as the right side!
Yes my arm has stopped swinging and in the last few weeks has got worse the tremor is also on my right side hand arm right side of my lip and right leg. I am finding most tasks with my right hand difficult and use my left hand without thinking, I start the meds Thursday hopefully I will tolerate this one.I am also finding keeping the curser on the right thing on the computer it wobbles about.
Further to what has happened to me, it all started in my mid forties I wasn't actually very ill just not firing on all six and doing less as I got tired easily I went from cycling everywhere and playing netball for a local team, to avoiding things that took my energy. I got the rash that lasted 2 years and then just went the same way it came out of the blue, then i had what they called reactive hypoglyceamia tests showed I wasn't diabetic but Icouldn't leave the house without a bottle of lucozade and a banana as my blood sugar used to drop without warning that too went away after about 18 months. had huge trouble with my gut that prompted them to remove my gall badder. the list goes on, so as you can see a diagnosis of PD as much as I would rather not have it is a relief.
having said all that I have led a pretty active life as they could find nothing nasty so I just had to live with it that I was managing to do until the latest symptoms set in about 9 months ago they stopped me in my tracks, I always tried to take charge of it but this wouldn't let me, but as I understand it if I can tolerate the simenet I should be a lot better. here's hoping.
I wish the same for you half the battle with anything is knowing what is causing your symptoms then you can deal with it accordingly
I wait in anticipation to hear positive news from you after your visit to the movement disorder chap.
Take care C xxxxx
Hi Everyone,
Your advice would be much appreciated I start Sinemet tomorrow 1 a day for a week slowly upping it to 3 a day over the next 3 weeks, when is the best and most effective time to take them.
C xxxx
Hi Clemmo
Did you mean to post your question about meds on my thread? Not that I mind one bit, I'm more worried that the people who can answer won't see it. I wonder if you'd be better off posting it in the 'treatments' section?
LW x
Thanks LW,
I took your advice and found the right place for it, I am a bit of a techno numpty
C xx
Easy mistake to make Clemmo, don't you worry. Forums are hard enough to navigate at the best of times.
LW x
Hi Littlewren,
How did your visit to movement disorder chap go today positive I hope.
C xxxx
Hi Clemmo and everyone:
So, great news for me, I do not have PD but was diagnosed with the enigmatic 'functional neurological disorder' (FND). The symptoms, however are very similar to PD and MS but they are not caused by organic progressive disease, in fact, they are the result of a wider blip in the autonomic nervous system, much like the PoTS I have already. In a nutshell, the emotional (autonomic) side of the brain cannot communicate effectively to the movement (motor) side, resulting in very real symptoms, just not caused by anything that can be detected (yet).
I have done a little bit of reading and YouTubing, mainly to see what can be done as the consultant wasn't so hot on that if I'm honest apart from giving me an online web resource. These functional disorders have historically come under the umberella of medically unexplained symptoms, so unless people (including health professionals) are in the know, they probably assume they are psychoogenic in origin, but this isn't the case.
One of the explanations given for the cause in my case is my inability to get restorative sleep. If my temporal lobe epilepsy I was diagnosed with when around 13 years old was the start of my narcolepsy (sometimes not easy to tell the TLE from sleep phenomena and REM intrusion into wakefulness) then I have not had good quality sleep for the best part of 30 years. This eventually creates havoc with autonomic functioning as parts of the nervous and motor systems start to become disrupted and eventually symptoms emerge.
I'm satisfied I do not have PD, I had no rigidity on examination and even though my left hand is slower than the right, it is within normal range. My only niggle I have left is from what I have read, people who have lost arm swing as a result of FND, will regain it the second they are distracted but mine is the opposite, the more I have to concentrate on other things, even basic things, it starts doing what it wants.
So, a bit of a wake up call in terms of looking after myself even better in terms of my narcolepsy, although I do everything pretty much by the book and take modafnil (alongside dextroamfetamine occasionally) daily to get me through - all these drugs do is help with wakefulness, the drug I need (sodium oxybate) has been refused by my CCG as cost prohibitive - this drug actually helps with the nighttime sleep and the cataplexy, as it is, I'm just papering over the cracks taking stimulants to keep me going.
Sorry for the long post, lots to think about, in fact, I'd be keen to know what other people think too and thanks once again for you all being there when I was worried. Very much appreciated
Hi Littlewren,
Good news indeed at last now you have something positive to work with,
I could hardly believe what you had to say we have both had similar experiences I saw the community PD nurse for the first time on Thursday what a revelation such a clever and well informed lady.
Her first concern was that the letter she received from the consultant about me started with this lady probably has PD when he had told me at my consultation I had it.
With that in mind she took a great deal of time to go right back through my history which I wont bore you with as I have mentioned it all before
She looked at the autonomic problems I have had with my bladder for the past 25 years and my other conditions Afib COPD and GORD all of which are controlled by the autonomic nervous system.
She then after much discussion concluded that my tremor was most likely to be benign essential tremor especially as I I don't get tremors when I am resting only when I am on the move and my problems are autonomic
However because the consultant had suggested I was tried on Simenet she said to continue with it at half dose 3 times daily to see how I reacted and she would monitor it if I had no improvement after so long the conclusion would be I do not have PD, but I have made the decision to stop them today as ten days in my symptoms and the tremor is worse than I have ever experienced all over my body I will contact her Monday and see where I go from here.
Keep me in touch with how you are doing, sounds like you have a lot of learning to do but you must feel a bit better about things knowing its not PD.
C xx
Almost bang on two years and I’m back…I still have all the symptoms I had previously and also some new ones - nothing has got better and now my arm is just in a constant state of tension, tightness, bouncing between a low level dull cramped ache at best, to a full on cramped feeling. The muscle on my forearm is now unbelievably defined, I do no exercise to justify the extent of the muscle - my other half was completely shocked when I showed him - even more so when he felt how rigid it all is. As I type this, my left arm is getting tired, way before the right arm so I have to stop. My thumb involuntarily positions itself across my palm and the middle of my hand is hard, tense and painful. My arm also feels warm along the top - basically I’m aware of it all the time in some way or other.
The arm still doesn’t swing at all, moves up towards my chest/head if I’m distracted, with the more distraction, the more the arm just does what it wants - it like nothing better than curling up so that my wrist kind of sits under my chin…the only time it feels improved is if my other half holds the hand and lets me stretch the arm out, this is obviously letting the muscles smooth out and it definitely feels better after doing this but the relief is short lived.
I’m going to need to get this checked out again, I know this…I’m very very close to finishing a major qualification (requires a lot of typing) but the thought of doing any typing at the minute is pretty off-putting - mainly because of the fatigue and weakness that’s pretty much constant. Also, as usual, feel like I am just going to get fobbed off again but I should emphasise that I am obviously fine with a different diagnosis but I really don’t think the FND fits, mainly because it can be fooled by distraction and mine can’t (I know it isn’t as cut and dried as this but still) - also, at the time of my consultation 2 years ago, the arm just didn’t swing - it wasn’t cramping, tense, rigid or so well defined. I’m also really struggling with cognitive stuff - attention is appalling, stopping in the middle of sentences as I can’t remember what I’m on about, that thing were you walk off and forget what and why you did - that is now pretty much constant which is so frustrating. I get everyone has this, but the frequency I do is now very noticeable - there’s times I feel a bit like a shell with not a lot going on except a painful weird arm, poor balance, terrible autonomic control, shocking mental processing, dry eyes, double vision, bladder urgency, clumsiness and a general feeling of despair - all compounded by a need to finish my work yet I’m struggling to do this…
Does this sound like typical progression? I’d be interested in some more feedback 2 years since I posted if anyone has any similar experiences or thoughts in general. Thanks in advance
LW
