Jan, I took to heart eliminating any foreign substances for my son. Pesticides vs. Herbisides. That seems to work for us. We have our lawn taken care of and our garden (huge garden)but it can only be natural, now. We have our annual bug spraying but it must be natural, past four years, I think. We have asked for the ingredients before they apply anything and get the approval of our doctor vs. our tips from you. Our doctor seems to take a real concern in looking into Jan's findings and respects her opinions in a manner that is I have to say respective for someone who has never taken care of a Myotonia Congentia patient but wants to learn what is best to take care of our child. We have been working hard on my son's diet but he is so skinny like me that I am so thrilled he finally eats anything in site. He stays away from things that Jan says is a no no. That is working for us. Lately, I see our son is getting stiff but I think that the school system must be putting down ingredients that are not favorable for our son. Also, everyone he visits must have parents that have all the chemicals that are not really positive for someone with a Myotonia. In the Northeast, everyone is spraying lawns and homes. I can't control every place my child goes but I can tell you that both my neighbors had pesticides put on their lawns and I complained because I felt they should of alerted me. Both said when I called that we called our landscaper and complained before your call. Both said that they had instructed their landscapers to never put any pesticides down because they did not want our child surrounded by chemicals that are harmful. Most people say nay to neighbors but I have to cherish mine. Winks to all my neighbors.

If you work in a job environment that is harmful to your Myotonia, leave. I think I'd rather be poor forever then let my child work in an environment that poses a danger.

All of your input is so helpful and I hope you all keep giving your feedback. Without your feedback, the kids learning they have Myotonia won't have examples to live by and the kids need your voices. The kids need to be able to share your experiences and voices to help them be the best they can be living with myotonia congentia.

God bless to all your voices. For me, it is a treasure.

mcboarder- this is a great post, and i second the emotion!! Three cheers for Jan and her caring and devotion - and 3 cheers for you and your devotion and dedication!! You are a shining example of taking the best of information, and putting it to the best of use, all for love. lois

Country: http://

thanks jan

Hi, Sorry I am new to this forum but I have just read your message. Sorry to hear about your job. I am in the middle of my diagnosis I have suspected hyperkalemic periodic paralysis with myotonia. I get Income Support on incapacity grounds - I too had to go to a medical but passed this. On the medical I was frank about everything and how it affected me.The problem I think that you may have encountered is that they take a snapshot of how it effects you on THAT day (witin that half hour meeting), not how you usually experience it and the doctors are not experts in every illness so there may have been a poor understanding of the disease. Believe me I have heard things from doctors that would make you cringe.You are doing the right thing by appealing, I went on to claim disability living allowance but was turned down, appealed this and went to a tribunal and I was successful and the money was backdated. I was given high rate care allowance on DLA. If you did this then this would mean that the DWP would not touch your ESA because being on high component care automatically makes you too ill to work. What will be in question would be, in which of the three categories you would be placed. Claiming DLA is not for the faint hearted because you are forced to dissect and explain all those things that you can't do in minute detail, which is very depressing and I know my life is spent trying to ignore these things and fighting through it as best you can. You also need to know that the whole process can take a long time. Please believe I am in no way affiliated to the website that will be prove invaluable in your appeal for ESA or claiming DLA, I advise you to go to the Benefits and Work website - it costs £18 pounds to be a member for a year but it gives you all the information you could hope to need and use. It is the reason why I was successful in my DLA claim and made me recognise where I had gone wrong in letters, form filling - IB50 etc. I did what was advised by the website at the tribunal and it was not surprising when I won. The tribunal gave me DLA for a year(I think because I was undiagnosed), I am again using this website but armed to the teeth from the very beginning and I feel more confident this time around. In answer to your question if they make allowances for this illness, the answer is "no." You need to go to your tribunal, (if it goes that far) ready to explain everything about your illness, don't be nervous there will be many questions from the panel, usually consisting of a judge/solicitor a doctor and maybe even someone from the DWP. Don't forget to send any additional information you may have about other medical ailments you may have. Medical notes obtained from your doctor are essential because they describe your illness from a different perspective. If you see a consultant, letters from your consultant to your doctor should be in with these notes. The chief thing is to remain positive and clear about how your myotonia effects you on a daily basis . At the tribunal it may seem that the panel are trying to trip you up - they are not, they are trying to get the bigger picture that helps them to make an informed decision which in the end should benefit you. Good Luck, you are not in an enviable position but you can do it.

Type of Myotonia: myotonia congenita

Country: uk

You know one of the things which I have always found among the more difficult things in the world is explaining this disorder, because most people think in very black and white terms in reference to neuromuscular disorders (weak and wheelchair bound, or not), and this is a very very grey disorder.

When I tried to explain it when I was younger it usually went like this....

"When I stand up or try to move, my muscles lock and I can't relax them for a few seconds, but it goes away and I'm fine UNLESS I sit down for a few minutes, or say I'm walking, then I'm fine but if I step down the curb and then try to go up it or jump up, or something scares me like a dog or a car and I try to run, sometimes they lock up again."

Then I have to explain how exercise makes it simultaneously worse and better. Then I have to explain how I usually know when I have a problem, except in the middle of the night when I go to move my leg and my calf muscle suddenly cramps up, painfuly BUT myotonia usually isn't painful. Then I have to explain how I can ride a bike and not work a cash register (quickly), etc etc etc.

I've never been able to get a full description of this disorder down in under 45 minutes, and when I'm done, most people still don't really understand it and even I admit it sounds like a like of BS, and that's the frustrating part because it isn't, of course.

Type of Myotonia: Becker

Yes Jenna I agree. My symptoms started within the last three years and I found it embarrassing just trying to explain things to the doctor. I say I felt embarrassed because I was always very active and could not understand why one minute I could do something and the next minute I could not. My embarrassment was first highlighted by a particularly bad, insensitive occupational health doctor who basically thought I was faking it and became rather sarcastic and annoyed when I did not go against my doctors advice by returning to my stressful,fast-paced job. She made me feel like I was lazy and a liar. My physiotherapist thought I had psychological problems because my symptoms were too diffuse. My orthopaedic consultant basically agreed and took me off his list saying there was nothing wrong with me and I should go live my life normally.

I was lucky in two ways,I have a great, understanding and helpful partner, who never lets me feel sorry for myself and I have a great personal doctor who supported, encouraged and took time to listen to me. My GP then referred me to a neurologist. But by this time I became really wary and still to this day have not told this neurologist all my symptoms. Luckily I told them enough and they did a number of tests and now I am being referred to another neurologist because they suspect I have hyperkalemic periodic paralysis with myotonia (not 100% on which type yet.) This new neurologist has a special interest in this condition. Now, I have a name for what I have got and I feel that there will be enough knowledge by this new neurologist, I will not be afraid or embarrassed to say what is going on.

So if talking to a doctor or health care professional makes you feel embarrassed because they don't believe you, how can you possibly explain it to a stranger or lay person? Who as you are talking to them you can see the disbelief in their eyes. Until three years ago, I myself may not have believed me because I had never heard of this happening to anyone. And yes I thought anyone who had a neuromuscular disorder would always be in a wheelchair.

But now my symptoms- the shaking, the stiffness and the spasms etc. are happening a number of times a day. It is becoming harder and too tiring to hide and I am becoming more confident in myself. I won't lie to you,sometimes I may be shaking noticeably badly but I may be ignorant of it because I may be concentrating on walking without falling, I don't like being stared at but now I don't care as much because there is nothing I can do and you only have one life so why live it in the shadows.

I have found the best thing to do is to look at things differently. Be confident as you tell people about it, when they ask and hopefully you will educate a few - do not give the disbelievers the power that makes you doubt even yourself or feel bad about yourself. I found living in the shadows amongst disbelievers intolerable and I couldn't live like that anymore.

Admittedly, despite having suspected HPP and being only diagnosed last month there is a world of difference between us. You have time and experience on your side from your youth that I do not have. Explaining things to those who do not believe must eat at the soul and be frustrating but unfortunately we have no choice but to continue for the rest of our lives. Chin up, Gillian

Type of Myotonia: myotonia congenita

Country: uk