posted
Hi I am new to this discussion board and could do with some help and advice. I'm not sure what I am suffering with but PKD sounds very similar.
I was diagnosed with Chorea 3 years ago but I am still suffering with movements, so now my neurologist seems to believe it could be caused by stress and anxiety. I have suffered from depression and anxiety in the past so he could be right. However, the last two bad episodes have been during this year when I have been happy and have not been anxious. Out of the blue I have had violent movements on the right side of my body causing my arm to move forwards and almost pull me out of my seat. When this starts I do then become anxious which of course makes it worse and more often. At its worst I can have writhing movements and it can effect my speech either slurred and slow or hardly able to speak at all. On one occasion my legs were shaking really badly. The symptoms can last from a few minutes to a few days. However I do get small movements daily (although not detectable to others). I know stress can cause a huge range of symptoms some of which can be very extreme. But if I can suffer this bad in everyday life and this is down to stress then it is equally concerning.
Also, I sometimes get nerve pain in my fingers, legs and face and feelings of hot water running down my leg. I often feel really fatigued before it comes on (not as in sleepy tired)and a lot more headaches.
Can anyone else relate to this?
Does it sound like PKD?
Or has anyone had these symptoms due to stress?
Sorry for the long text but after this last episode this week it has shaken my confidence and I could do with support from fellow sufferers.
Thank you for sharing - and although my heart breaks for you - that you have to suffer with these things as well - everything you have described exactly describes the Paroxysmal Dyskinesias that I have as well - now - I am not a doctor and it took several before they "believed" me - the uninformed ones trying to write it off as "anxiety induced" or just from "stress" - but finally I found some good doctors who proved this wrong and I was properly diagnosed which has been very helpful.
I don't know if this would be helpful to you or not but on the homepage here on this wemove website - if you go to the far left hand side and go five lines down - you will see the listing of Dyskinesias (Paroxysmal) - and if you follow the links to this - it will give you tons of info. on the different types of Paroxysmal Dyskinesias - the PKD = Paroxysmal Kinesigenic Dyskinesias - the ones that can hit suddenly and are most often brought on by sudden motion and usually don't last that long =- then the other kind -PNKD =- Paroxysmal Non-Kinesigenic Dyskinesias - where the attacks hit out of nowhere - just spontaneously - you can be just sitting there - happy as a clam - not anxious or making any sudden motion and bam - they hit and they can last a bit longer than the PKD ones - then there are the PED ones - the Paroxysmal Exertion Induced Ones - that can hit ya - from just about any type of exertion - from walking up the stairs to making any even slight exertion - and then the PHD ones - my personal favorites - (she says tongue in cheek!-_-) Paroxysmal Hypogenic Dyskinesias - that hit during sleep - now there is debate even in the research field about exactly how this rare kind works - but just for me anyway - and this is just how it manifests itself for me - I can fall asleep fine - at night when it's appropriate to be tired and sleep for several hours and then along about 3am - I will literally be woken up out of a sound sleep - my whole body going through the motions of intense muscles contractions - so intense that it literally pulls me from a cozy sleep! Gosh I hate that! But I have found that a combo. of Dilantin, Klonopin and lately they have started me on Lorazepam - which is suppose to help with the nausea from chemo. but also has worked wonders to stop the PKD and all the other attacks - as well as Benadryl - which has been known to help with movement disorders - when I literally take these - every four hours - even at 11pm before I go to sleep and set my alarm for 3am - get up and take these - this combo helps me the muscles to stop spasming so that I can go back to sleep - only to wake me up again at 7am - four hours later - time for another dose!
Anyway - finding a really good Neurologist that is familiar with either Neuro-Muscular Disorders or Movement Disorders and that can work with you and find out which helps you best is really helpful -
But I really understand - it can do a job on you when you don't know what is happening - and you are right =- support from fellow sufferers is really key!
So = even though I am sad that you had to have these things happen to your body too - you are very much not alone - and this posting board is an excellent site to meet others with the exact same condition!
I know when I was FINALLY properly diagnosed with this in June of 2006 - then found this place and talked with other with PKD and PNKD - I remember thinking - I am not crazy after all! This really IS a real true physical condition - and others have it too -
Though we may be few in numbers - those of us that have it too - can very much relate to what you are going through.
So - warm hugs to you - and welcome to our cozy group - lots of great folks here that I am sure you will be meeting too and I do wish you the best!
posted
Hi Suzie Q, I read your post and so much of what you say sounds like my daughter Emily she was diagnosed at around 3 years old she is now 7 and has pknd but I also see signs of pkd from your experience can you have both? Emily takes Keppra 3 times a day sometimes we have to change the dose around. We call emilys movements her wiggles she started at a year old. She also awakes a night these are what I feel are her worst. her doctors is not sure we should wake her for medicine, or give her a bigger dose at bedtime does benedryl actually help? maybe she could try that she is so young her options are limited. would love any help I can get. their are so few people who actually understand what she goes through I worry about her every day. hope to hear from you soon.
Thank you for your warm welcome and your comforting words. It is just nice to talk to someone who knows what I'm going through and doesn't think I'm some sort of fruit loop!
Anyway I shall be back to see the Neuro soon, but I don't hold out much hope with the support. At least if I can get the support from this site and people like yourself that will certainly help.
posted
hi all-ive posted some time ago and exchanged notes with suzie q.im still without a dx andtold its psychogenic.im now in a hospital bed on o2 and cant be alone dueto my episodes.im on neurontin,clonazepam and for severe episodes by fluke found 50mg of benedryl injections stops them in a few min.and then have to get unfrozen and untwisted-marie
Posts: 12 | From: olympia,wa | Registered: Sep 2008
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Nice to hear from you all and hope you all are doing well or as well as you can be doing - my heart goes out to all of you and even your children that have to deal with this extremely invasive - condition that can effect your life so profoundly - in different ways - literally from minute to minute.
Just wanted to add that I have found that they now have a new product that I have found really really helpful - that is "liquid Benadryl" tablets - so it absorbs into your system quicker - I now take the Dilantin (100mgs'), the Klonopin (now 1mg), 2 - 25mg tablets of the liquid Benadryl and .50mg's of the Lorazapam - all of these every four hours and it has made a HUGE difference!
Funny - I never in my life would have wanted to go through the experience of having cancer - but as they call it - one of the "incidental findings" - in a good way - that I found was that the Benadryl and the Lorazepam - were excellent for the PKD and PNKD and I never would have known that! Plus the Benadryl helps with my allergies and even helped with the side effect of chemo - namely keeping my eyes from being itchy and watery as it keeps it from doing that for the allergies but also keeps the same side effect away from the side effect of the chemo - so I say - Bonus! -_-
I am seeing a new Neurologist on Thursday which I am very hopeful about - the last one I saw this summer, which I do appreciate - examined me - in a bit of silent wonder - and at the end = looked me in the face and said "I have only read about cases like yours in my medical books but I have never seen anyone with your condition - but i know someone who has - and I think you should go and see him - so he sent that other Neuro. - who happens to be a movement disorder specialist - a special letter of introduction for me - telling him about my case - what he saw when he examined me and asking him to see if he may be able to work with me - what a nice guy! Wow - imagine that - one doctor actually trying to help you and being humble enough to refer you to someone who can help you more - my hats off to the first doctor! So = I am hoping it this second doctor will let me continue on the Adavant - or Lorazapam - at .50mg's - once every four hours - six times a day - 24/7 - like I am doing now - it will keep just enough medicine in my body to "tame the Cobra" as they say and keep the PKD and PNKD attacks at bay- right now the Oncology people really don't know about PKD and are only letting me take four pills a day - to help wiht the nausea from the chemo - which is good - and has been helpful - but I miss two critical doses - one at 11pm and one at 3am - every night - and then have to pick it up at 7am again - the next day = but then at means I wake up from the PKD and PNKD and PHD attacks at night and have trouble sleeping - so I am hoping that the new Neurologist will let me continue taking all the other drugs the same and just increase the Lorazapam by one 1mg - so I can take a .50mg tab at 11pm and one .50mg tab at 3am - so that when I wake up with the attacks during the night - the medicine will put me right back to sleep - as I am sure you all know very well - how tough it is when you can't sleep at night and feel miserable the next day! I have come to set my tiny alarm clock and if I take all the meds consistantly every four hours - even at 11pm and set it and wake up at 3am - and take it then - I can go right back to sleep - and drink a cup of water with it too each time - so I don't get dehydrated - or some bottled water - that combination takes away = at least for me anyway - the symptoms just about 95% and that is ok in my book! -_-
I finished my last round of chemo for the cancer - and I am also hoping that the PKD and PNKD will calm down too as if there is anything wrong in my body - like feeling sick or anything - it makes the attacks much more intense and all - so I am hoping when they do the PET Scan - that they got it all and then I don't have to deal with that anymore!
I can't believe I am saying this - but I can't wait to just getting back to dealing with the PKD and all and not having to deal with the cancer too - because even though it hurts sometimes and is incredibly inconvenient - it's not life threatening and won't kill me - so = fancy that! Having to have another condition to actually make me appreciate the condition that I have! ( and I am not saying that it's good to have it - by no means - hope that came out right!)
Anyway - as always - its so excellent to be able to talk to you dear people and thanks for letting me ramble on and I do pray that you all are finding a bit of relief in your lives as well.
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