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Maybe I'm not doing so well
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sbncmo posted:
Last year I was having some trouble with my legs, feeling like they were going to collapse under me. I never really gave it much thought, just chalked it up to the muscular problems I have. I will walk & my legs will just give out under me.

I have also had sporadic paralysis for the last 27 years which I chalked up to a fall, but no doctor has been able to find any pinched nerve. I remain in extreme pain.

Over the years I kept falling asleep, but I was checked & cleared of any sleep disorder. I can feel myself going out - I often remain in a semi-conscious state.

Anyway, my home health aid said this morning that she has a friend who has exactly the same symptoms & she has a type of seizure. She couldn't remember the name of it but said it was "juvenile something". When I looked up the info on seizures again, I found the juvenile myoclonic seizures.

It makes sense that this could be what I am dealing with as well,
since I've had this since childhood. But of course, I would need to discuss this with my neuro to see what he thinks.

Anyway, I would appreciate any thoughts.

Shelia
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dancer86442 responded:
You already have quite a number of different seizure types. But, yes, it sounds like you can add this, as another type, to your list.

Yes, it's time to discuss this w/ your Neuro. Sounds like it may be time to go back on the DR/med Merrygoround. Good news: there are 28 new meds ready to be developed. Not sure When they will be available. But, Research is really catching up to our needs. Hugs!

Love Candi
 
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sbncmo replied to dancer86442's response:
Thanks, Candi, I knew you would be able to give me some idea on this. As you know, I always do my research when I have questions, so I was pretty sure that juvenile myoclonic seizures were what my home health aide was talking about when I looked it up.

It wouldn't really surprise me if that is added to my seizures because I was told earlier that I have myoclonic seizures, but to get narrowed down to specifically juvenile myoclonic epilepsy would be something else. From what I've been reading today, it seems that JME will produce other types of seizures, starting with absence seizures as a young child, such as I had.

JME doesn't cover all the types of seizures I have & I could easily live with the diagnosis of plain & simple "Epilepsy", but it would be interesting to find out if it could be narrowed down to JME & if it is, see if the other seizures could still be stemming from it. But, I'm not going to claim it until I talk to my neuro!

28 new meds ready to be developed, huh? That's great for those of us who aren't able to tolerate the available now. If it ends up that I have JME, I will need a new drug because I can't take the ones that are used for treating it, at least the one that is listed as being used to treat it - Depakote.

I've been so excited since the beginning of the year with a change in neuro & meds bringing one bad type of seizure under control finally & it seems that it helped with the symptoms I mentioned above for a few months.

I didn't even realize I was getting bad again until a couple of months ago. I kept feeling the oddest sensation, like someone had put their hands on my upper back & shoved me forward - I felt the weight & I would start to fall forward & then catch myself to sit back upright. I guess I was having a seizure, starting to fall asleep & being in that semi-conscious state I mentioned. It would happen anywhere - at the computer or while drinking a cup of coffee or while eating. And then the spells of paralysis hit again.


Well, I have more to research so I can be prepared when I see my neuro in a couple of months. Always much more to learn. Hugs!

Shelia
 
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dancer86442 replied to sbncmo's response:
Hi Shelia,

I'm Glad to hear you are doing your 'homework'. If JME are 'recent' episodes, (w/in the past yr) I doubt if other seizure Types stem from it. Although, I do believe, it would be possible to have an Episode range from an absence to Myoclonic to a gran mal AKA tonic-clonic. One stops another follows.

Have you read epilepsytalk.com, Phylis' article on 40 seizure syndromes? JME is discussed/described in her article.

Hmm, if the med you are on Was working, it's a Good possibility that all you need is a med tweak. Increase.

Shelia, you just told me your Triggers! Be sure to tell your DR about Comp/coffee/eating. Phylis has an article about unusual triggers, too. Are you keeping up w/ your Journal? Take it w/ you when you see your doc. BTW: I would call & let him know about the new incidents & discuss med dose! He should be able to do that by phone. I know my DR Did!

Love Candi
 
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sbncmo replied to dancer86442's response:
Hi Candi,

Sorry I haven't replied any sooner. I don't get on the computer very often. I still need to look at Phylis' article - I'll go to it & print it out so I can read it as I'm able.

I thought about the triggers. I haven't had coffee or tea in over a month & go thru spells where I don't have any caffeine for weeks at a time, yet it doesn't seem to change these symptoms. I don't eat processed food as a general rule, I like homemade, salads mostly, with some meat & rice or potatoes. Simple food.

In Nov & Dec when I was having so many seizures & ended up with PCS, I was ordered not to be on the computer, not to watch tv, not to read, not to text, etc. I still greatly restrict these things as they hurt my eyes & my head hurts too much still.

When I'm in a vehicle, I always have to keep my eyes closed - I can't handle things flashing by.

I'm sure I have some other triggers so I'm interested in seeing what Phylis has to say in her article. If I can learn what they are & avoid them it will make life easier.

Yesterday, I went with my twin nieces to the city to go to the thrift stores. We haven't do that for a couple of years, since their mother, my sister, died. We had have been talking about doing this for the last 6 months & we had so much fun. But twice on the way up there, I felt that forward falling feeling within a 10 min span. I hadn't had any caffeine, just some dry cereal & water (I'm lactose intolerant) & I was keeping my eyes closed while we were talking except when I was looking directly at one of them. Nothing should have triggered a seizure.

I don't know if my meds were working on all the seizures before like I thought they were. Don't get me wrong - they work great for the ones that were sending me to the floor 2 times a week for about 2 1/2 months. Just not for all types of seizures.

You know how you can fool yourself into believing one thing & someone else can look at you & see something different? That's the way it is here. One day the supervisor of the health service I receive came to interview me & she asked me questions. I started to answer them one way but my home aide, in the kitchen, yelled out a different answer. Of course, I had to admit that she was right - she sees things as they are whereas I see things as I want them to be. Thus the topic of my discussion.

Ok, Candi, I've come back to this several times & I need to get it off to you. I'' try to look up Phylis' article the next time I'm online. I'm sure I'll learn something from her. I always learn something from you, too. Take care, my friend.

Hugs,
Shelia
 
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saxofone1 replied to sbncmo's response:
Hi Sheila,

It is strange how we all can look at the same picture or hear the same song, and have totally different viewpoints/impressions. I guess that's what makes for variety. Thus eiliminating boredom.

Do keep us updated on how things are going for you. I wish you the best.

angie


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