My Pkc

I have been suffering with PKC or as it it sometimes referred to PKD since i was 13 I am now 30. My symptems were everything listed under the sun including caffieine being a trigger. It was a very hard time for me physically and mentally, because not only could i not control my body everytime i moved any part of it , i also thought i was going mad because nobody could tell me what was wrong with me!

It took several consultants and over two years for me to receive diagnosis as there was only two people with pkc (including myself) in the UK at that time!

Medication iwas  prescribed was Tegratol Retard, Carbemapasine, Vigabatrin and several others until they discovered that Lamotrigine was a wonder medicine as far as i was concerned.

It took a long time but finally i am now under control with Lamotrigine. I only have breakthrough symptems when I have to much Caffiene, sleep depravation, stress anxiety etc. The main issue i have is with anxiety related to the pkc. Though i consider myself to be very lucky i'm happily married with a beautiful daughter and son, which a few years ago i didn't think would ever happen!

Though would love to hear from others suffering.I have never had the opportunity to discuss it with a fellow PKC'er or even have someone who understands what i am talking about or who know the strange feelng i in my legs before an attack!

charlotte01 charlotte01
26-30, F
22 Responses Mar 8, 2010

Hi Charlotte. My father is 64 years old and was also diagnosed with PKC November 2014. We were told that it was a very rare condition. He was on his sixth cycle of chemo when he started to develop jerky movements. Chemo was then stopped and a referral made for an MRI and neuro appointment. I did ask if the pkc was brought on my the chemo however we were told no. In the meantime the ******* was getting worse and I took him to A&E however they could not do anything about it and he therefore had to wait for the appointments to come through. I then took him to A&E again on another occasion shortly afterwards as he felt unwell and had a temperature. It was then that he was admitted due to an infection. During his stay in hospital the jerky movements got worse and he then had seizures on a number of occasions. In total my father was in hospital for nearly 7 weeks. MRI and CT scans were done quickly and neuro doctor came to see him on the ward who diagnosed him with PKC. He was in hospital for near seven weeks as even though the infection had cleared they were trying to treat the pkc with various drugs as some did not work for him. Carbamazepine worked for him however caused a lot drowsiness. Eventually the right meds agreed with him which are a combination of lamotrigine, pregablin and lorazepan. My father gets very anxious and this has been caused by the PKC which has causes him a lot of distress and had taken his independence away as he had been unable to feed himself as both hands and shoulders were affected during his stay in hospital. Since being discharged he has got back his independence however in the last two weeks the symptoms have come back and seem to be getting worse eve though they had been under control with all the drugs he has been taking. Back to square one again!

Hi, just wondered if your father is drinking a lot of caffeine? It was only when I started drinking more coffee when all the symptoms came back again. I saw my consultant and he told me caffeine and alcohol are both triggers, shame they didn't tell me this before! I cut caffeine out of my diet and within a week I was back to normal. 😄

Hi! My father has not been drinking anymore tea/coffee than usual. Whilst in hospital he used to drink up to three cups of tea a day. We were not told that caffeine could have an affect however had been told to not drink alcohol. He is now in a situation where he constantly feels drowzy as we had to call the emergency number on Sunday and the doctor increased the pregrablin to 75 in the morning and 75 in the evening as well as taking all the other meds. We have been told they cannot up to the dose to anymore than 150 daily. He has been having severe pain his legs since last Friday and now finding it difficult to walk. I spoke to the doctor today who thinks it may be because of the pkc but I said that I don't think it can be as he has never complained of painful legs before when he was being treated in hospital. It's so frustrating for him.

Add a response...

My daughter has this only mildly but she was told it was very rare, ie a million to one, however it was diagnosed in the 1990s and I doubt whether she is one of the only 2 people with it in the UK! Looking at this site there are obviously more people with this than they are telling you! I think others will be pleased you have children, as does my daughter and the PKC seems to have had no affect on her ability to reproduce.....

My daughter has this only mildly but she was told it was very rare, ie a million to one, however it was diagnosed in the 1990s and I doubt whether she is one of the only 2 people with it in the UK! Looking at this site there are obviously more people with this than they are telling you! I think others will be pleased you have children, as does my daughter and the PKC seems to have had no affect on her ability to reproduce.....

My daughter was diagnosed in the 1990s although she never had excessive episodes. She is now 28 and is symptom free provided she keeps on a daily low dose of carbamazipane (tegretol). She has just had a baby with no problems. None of the tests she had at the time showed up anything, the specialist just recognised the symptoms and knew what to give her. She was told she was 1 in a million at the time, but I have read since it is 1 in 150,000 and mainly males. They did do extra tests during pregnancy though as she was supposed to come off the medication before conceiving, but there appear to be no adverise effects

Good Afternoon,<br />
I started having symptoms of PKC when I was in sixth grade during gym class. My gym teacher had us doing "springs", where you start running without much warming up, and run to the orange cones where you stop immediately. This when I got toward the cones, I didn't know what was happening, and my head, tounge, jaw, left leg...left arm, and everything got stiff and was almost paralyzed and moved toward the left. It only lasted no more than ten seconds when it did happen. At first I would try and cover it up by walking slower behind people, or stop and pretend I was tying my shoe. I came on when I got up quickly, or if I were nervous. It may had happened when I was nervous because I was afraid it was going to happen. I was especially nervous in school when I were to get call up on stage for an award.<br />
<br />
After a couple of years, I told my older sister, (2 years ) older and she told me it has been happening to her too. We finally told my mom, and she took us to a Neurologist, in Boston. Besides myself and my sister, my Dr. had only heard of one other case of this. (He is a Dr. in Boston) He always had us hop on one leg..and do reflex tests to see if one of those movements would trigger it, which it never did. He put us both on tegretol, and I was on that for years without any movements happening. (Unless it was a period of time when I was forgetful and forgot to take it. He put me on 200mg at 7am and 200mg at 7pm, which he said was a very low dose. (I also have a younger sister, but she doesn't have any sign of PKC.) Last year I changed to Keppra, 1000mg twice a day. I didn't have to change medications, but I read that if you get pregnant on keppra it wouldn't be as bad for the baby. I'm not planning on having a baby now, but my biggest worry is what to switch to when I do get pregnant someday. Well, that is my story of PKC.

Hi Ivebug28,
Have you considered having a test for copper levels? Not sure if you read my story above, but basically my symtoms were identical to yours, I even used to hide it by tying shoes too. If you have high copper levels, it could be causing it because copper tends to accumulate in the brain where it can interfere with electrical signals, kind of short-circuiting them. The good news is that if copper levels are high a good naturopath will know how to detoxify it from your body. My sysmptoms stopped completely about 2 weeks after starting the detoxification process. Cheers, Lyle

I started showing syptoms of PKC nearly two and a half years ago. I was diagnosed with copper toxicity about 9 months ago, but when I started taking the vitamins to remove the copper, I became very ill. I was diagnosed with PKC just this week. My doctors have not tested my copper levels recently, but I will definitley mention this to them. Thank you.

Hi Charlotte<br />
<br />
My name's Lin and I have literally joined about five minutes ago as I felt compelled to write to you after reading your story. I haven't had a chance to write my story yet as it's quite hard but basically I have had PKC since very young, hid it for years, told at 11 that I was hormonal, hid it for another ten years then got diagnosed at John Radcliffe Infirmary - total time of diagnosis was two months - I guess I was very lucky. I took Phenotyn first and after years and years of having up to thirty attacks a day - within two days it stopped. I almost felt cheated for losing so many years that it was that simple. I am now on 400 mg Tegretol Retard a day. I live in Bucks, am 42 and was diagnosed when I was 22. I guess i must have been the other person in the UK with this and wish I had known back then as would have loved to talk to someone who understood!! Unfortunately my son aged 11 was diagnosed two years ago and my 15 year old son was diagnosed last month but they are great boys and don't have the embarrassment that I used to have as it is just about fully controlled. I would love to know how you get on with the copper count - I have already told my husband this is only done in Australia and need a holiday - mmmm - not sure if I will get away with that one!!! Anyway not sure how this all works but if you were interested in a chat or wanted my email it would be amazing to chat to someone who understoodl <br />
<br />
Anyway take care and hope to hear from you soon.<br />
Lin<br />
X

Thanks for that Lyle, thankfully i don't eat many of those foods, though am a great lover of bread so the yeast is a little worrying!<br />
Speak soon, charlotte.

Hi jgmbravesfan1,<br />
Sorry but just got your message. I agree with Charlottes comment that you probably should see your doctor and get tested for copper first. The next thing would be to see a good qualified naturopath so that they can treat if your copper levels come back high. From my experience you need to be careful if self medicating (even vitamins). But having said that, I'm extremely excited that you've found the information that I posted and hopefully it has sent you on a path to a solution. Please get back to me as things progress, would love to hear from you, Lyle

Hi Charlotte,<br />
<br />
Sorry its taken me so long to get back to you with this information. I can’t remember the name of the vitamin that I took to detoxify the copper from my system. A qualified naturopath should be able to recommend a vitamin supplement and required dosages for your instance but let me know if your stuck and I’ll try and get the vitamin name from my naturopath.<br />
With regards to diet, the report of my Hair Tissue Mineral Analysis lists the following foods as high in copper: Grapes (too many pesticides I think), Chocolate (sorry), Peanut butter, Avacado, Walnuts, Bran Flakes, Shrimp, Trout, Liver, Pecans, Bakers Yeast, Haddock. Interestingly, the reports states that “individuals with excessive tissue copper accumulation will often crave foods that are high in copper”. I found this statement accurate because I was addicted to grapes and ate them by the truckload!<br />
Hope this information helps. Good luck with the doctor and please let me know how you go, Lyle

Hi, jgmbravesfan1<br />
Hope the copper test works for you too! <br />
As you've probable read above I had no idea this copper toxidity existed. I am going to be writing on tuesday to let people know what my doctor tells me.<br />
If i was you i would recommend having the blood test because without it you'll never be able to know if this could be the cause of the PKC. Plus you need to know whether the copper levels are high or low in order to correct them. Take care, Charlotte.

8pfi8s25my<br />
I've got pkc and you may have just made my day. I don't know if i have high copper of not but I'm starting vitamin supplements tomorrow. If this works, Bless You! and good luck charlotte01!

That would be great if you could send me that. It's frustrating that i've got to wait another two weeks to see the doctor but never mind! <br />
Sorry to ask another question, but out of curiosity did or do you have fits in strobe lighting, or has this stopped since you controlled your copper levels? <br />
I'm sure that in the UK this isn't widely known about copper and PKC/PKD, one thing i want to do is make doctors more aware of this.! It worries me that there is bound to be more in England like myself that have never had this simple blood test carried out to check copper levels and could be helped by a changed diet. Speak to you soon, Charlotte.

Hi Charlotte, thats unbelievable news - I have goose bumps! I basically took vitamins that de-toxed it from my system, I also controlled with diet to ensure levels didn't rise again. In my report (they did a hair analysis in my instance) it listed food sources to avoid that are high in copper - I'll send you a list of these. I'll also get back to you on the details of the vitamin I took (I'm at work and the details are at home). Good luck on the 2nd august, Lyle

Hi, sorry it's been so long since i've been in touch but i have only just got blood results back and they have shown abnormal copper levels! I'm going to see my doctor on the 2nd august to find out what they're going to do next so will let you know what they tell me.<br />
How did they medicate you or do you just control by diet?<br />
I can't thank you enough i've waited over 15 years to find this out.<br />
Hope to hear from you soon, Charlotte.

I'm seeing my doctor next friday, so hopefully will be able to let you know the resuls soon, i'm hoping this may be the answer. I have never had any tests to find out the cause so am now wanting some more answers myself! Speak to you soon. Charlotte

No worries, good luck! <br />
Please do let me know how you go and if there is anything I can help you with. If you're hitting brick walls I could even forward the details of my naturopath here in Melbourne who I'm sure would help you. Its so typical of docotors to treat the symptoms rather than the cause of any medical condition, in my natuopaths case I belive she found the cause of the problem, albeit by accident. To my knowledge nobody has ever made a connection between PKD and elevated copper levels, so its very exciting for me that this may hopefully help you.

Thanks for letting me know that! Nobody has ever told me this before. I will get in touch with my doctor and see if he can run the tests for me. Thanbks again, will let you know how I get on.

I am 37 years old and live in Australia. I first experienced PKD when I was about 20 years old and experienced the same symptoms that many of you describe. In my case I felt the 'seizure' coming on a few seconds before hand. The left hand side of my body was affected - it would tense up from my toes all the way up to my face - they weren't fits, rather a tightening of the muscles where my toes and fingers would curl over, my face would pull to one side, etc.<br />
I was also told by my neurosurgeon, ath the age of 20, that the seizures would eventually go away and he put me on tegretol which worked at the time, however I didn't like the idea of medicatin so stopped it after a few months.<br />
I am writing this email because I haven't had a fit for 18 months (they used to happen several times a day) and I believe I know why they stopped.<br />
I saw a naturopath (not for the PKD but for general health) and she did a hair analysis to identify potential toxins in my system. She discovered that I had extremely high levels of copper in my system - I can't remember the exact number without checking the test results but it was in the order of 10-20 times the recommended limit. She prescibed some treatment to detoxify the copper from my body and I also removed all food sources from my diet that can be high sources of copper. Within a number of weeks the fits stopped. Hopefully this information will help you in some way.

i also have PKD tho my doctor stoped seeing me after i refused to either have a seazure infront of her or have a seazure on camera (i have spent almost 20 years fighting off any seazure i feel comeing on i doubt i would be able to ever just freely alow myself to have one)<br />
my seazures are caused by movements such as standing up or walking mostly tho i have had them at other times where trigered by nothing at all.<br />
i try to lead a normal life im married with a famly and i work full time but un known to anyone other than my wife im fighting a constant battle with my self trying not to have a seazure.<br />
people who get to know me think im the most relaxed chilled out person they have ever met but thats only because i know i can never react to a situation by jumping up in suprize or running around like a blue arsed fly or if im walking somewhere to them i never seem to be in a hurry if only they knew eh.good luck with your treatment i hope it works out great for you.<br />
my doctor told me its common for people to grow out of it in later life i really hope this is the case with me

i also have PKD tho my doctor stoped seeing me after i refused to either have a seazure infront of her or have a seazure on camera (i have spent almost 20 years fighting off any seazure i feel comeing on i doubt i would be able to ever just freely alow myself to have one)<br />
my seazures are caused by movements such as standing up or walking mostly tho i have had them at other times where trigered by nothing at all.<br />
i try to lead a normal life im married with a famly and i work full time but un known to anyone other than my wife im fighting a constant battle with my self trying not to have a seazure.<br />
people who get to know me think im the most relaxed chilled out person they have ever met but thats only because i know i can never react to a situation by jumping up in suprize or running around like a blue arsed fly or if im walking somewhere to them i never seem to be in a hurry if only they knew eh.good luck with your treatment i hope it works out great for you.<br />
my doctor told me its common for people to grow out of it in later life i really hope this is the case with me