With In The Past Couple Years I’ve Noticed Some Changes With Myself. Not Only Living With Epilepsy But Hydrocephalus As Well . The
symptoms have a tendency to collide with one another. Symptoms like fatigue, mobility problems loss of appetite plus more. I’m at whits end now with all of this. I’m at the point now I’m not wanting to continue to push myself when I know I can’t. because pushing myself only makes it worse. I’m at the point that safety matters more to me not only at home but in public as well. My neurologist is already saying he doesn’t think I’ll need a mobility device like a wheelchair ♿️. Ring prone with… read more
It’s hard but stay positive. No other choice I think. Surround yourself with people you care about. Do things that you enjoy. Watch and listen to comedy. Show all of your emotions. Be yourself, for yourself. Don’t think too much about tomorrow. I have a dog which really helps me when I’m down. Keep on fighting, it’s worth it. Be well my friend!
Quinn16, I know how it is sometimes but please don't give in to it and quit fighting because that's the worst thing you can do because you wouldn't be able to stand yourself if you do. I had a close friend who decided to give up and after she did she said she felt worst then she did before. The best thing to do is to talk to someone about things and do things you enjoy and makes you happy the main thing is try keeping a positive attitude and like I said I know it's hard sometimes but that's when you tell yourself you can do it. I'm always here for you.
Quinn, I suggested this before, talk to your primary care physician. Also if you’re getting SSI or any government assistance, contact your local Social Security office, In NJ it is a county thing, In your state it might be something different. You can find even more information at www.ssa.gov
You can also try going directly to your insurance. Even if you don’t get government assistance, social security can get you some extra assistance you may not know you’re entitled to. If you go the insurance route, and they need “preauthorization”., you can probably get that through your (PCP). And he/she might be able to refer or know of a different neurologist. Im going to say this again. This Neurologist is doing Nothing to Help You. And has has the worst bed side manner of Any doctor. Please Find A New One. With All Due Respect and Love My Friend, Stop Seeing a doctor who doesn’t Listen or RESPECT YOU And Your Needs. .YOU DESERVE BETTER. You know your body and needs Better than Anyone. Take Care Of It.
I apologize if I was harsh or sounded like, a “know it all”. I just Care and don’t want you to keep being denied of what you feel is Best for YOU.
Quinn, My Friend, when I think of anything else that can offer something, possibly helpful, I will. Tell me to Stop if you want me to. Feel better.
JolF , My social security Disability hasn’t started yet. It probably won’t start til after the first of the year. I have full intention to tell my general practitioner when I see him in February that I’m struggling with balance issues as well as weakness in my leg. From all the symptoms that I’m reading, everything is pointing to one thing and one thing only everything’s pointing to spinal stenosis, which I’ve not yet been diagnosed with, but the discomfort is in all three parts of my spine and has been for quite some time, and I have all idea that a nerve is pinched in my spine somewhere there’s triggering everything that I’ve mentioned that being said that’s a good reason why I would be needing wheelchair assistance. It’s just my neurologist office nor has internal medicine yet said OK. We need to do an MRI to see exactly what’s going on and I will point that out in February. I’m also finding if I stay on my feet too long, it gets very painful so that would be another reason right there.
JolF, the curtain neurologist I have I told him about the symptoms. I was having probably about two weeks ago, maybe three weeks ago now and I told him about me getting off balance at times any other symptoms I have as well and his immediate comment was well I don’t think you need a medical device or mobility device is what he said not medical device. at first, I thought I had to do with my medication‘s but more I think about it or the more I read on stuff like the burden sensation loss of balance and other symptoms I’ve been having everything’s lining up to spinal stenosis first I think that I MRI needs to be done on my spine from the cervical all the way down to the Thor attic area not Thor attic, but lumber area to see exactly where the areas are that I’m feeling the burning sensation is I have all idea it’s a nerve in my spine that’s causing all this. That being said everything I’m reading if it’s not treated, it can cause paralysis if not treated my general practitioner is aware that I’ve been having discomfort in my spine and couple years ago. He gave me the generic brand of Celebrex to hopefully calm everything down, but it never did help. I’ve got to go to him in February. The reason that I have my neurologist appointment in June is because that’s my next evaluation with DMV. If I have it too soon they’re going to refuse the paperwork. I’ve got to fill out then I’m gonna have to turn back around again and go back to the neurologist again so that will accept it. I had to do that earlier this year cause I was a month too early from the six month mark and they made me go back to my neurologist back in November so I could get an updated again so that’s where that’s coming from. Yes I can walk a short distance before I start tiring out and then I have to sit down. It’s normally not lasting but 2 to 3 minutes at a time if that long. They having to push through this every day is actually very tiring. Just so you know too the QUINN in my screen name is actually my last name. I didn’t use any part of my first name of course nobody calls me by my last name. I normally go by my first name only because my middle name is the same as my dad‘s middle name and he goes by that so that’s why I go by my first name which I’ve never been too crazy about. With me being off today I ended up staying in my pajamas and robe all day long today to keep me careful cause I really haven’t felt too good today trying to battle battle on chest cold it’s been giving me a hell since last week. About a month or so ago, I was staring at the top of the stairs and I started losing my balance and started going forward. I had to catch myself before I ended up going face first, so that’s another reason why I was putting the wheelchair into play.
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