Mayo Clinic Connect
How do I add myself to a member / discussion group.
Liked by Leonard
Or do, locking follow do,that?
Or does follow do that.. fingers hit wrong keys
Jump to this post
Hello @maggiek, I believe following does that. Although I am getting notifications from a group I didn't realize I followed. Recently my hands have started "twitching" so it is quite possible they twitched the follow button without me realizing it.
Have a good day.
Hopefully a moderator or mentor will be along who is better qualified to answer this question than I am.
I see you’re following the Epilepsy thread so I was curious if you in fact had the condition. If so I was wondering if you would be willing to share some of the details you have been experiencing since epilepsy is such a personalized condition and how numerous people may have the same specific diagnosis yet they may all exhibit different symptoms. Doctors are good at explaining the basics of epilepsy but their information is usually very generalized. I think more personalized information is more beneficial to more people. Mayo Clinic Connect offers us this opportunity. I believe the most important thing we can do is get as much information of our own personal experiences out there so others may learn or relate so they know they aren’t alone. When I developed epilepsy forums and even support groups weren’t available. So if you could share some information it could be very valuable to others like, what age did you develop epilepsy, what type of Epilepsy do you have (diagnosis), type/s of seizures, medications that helped as well as ones that didn’t, diagnostic tests, do you suffer the usual side effects of drowsiness, memory issues, aphasia etc or have you ever been a victim of discrimination or victimized from the vicious stigmas that are all to common in our society. There is a separate discussion on stigma, here is a link if you care to share any experiences;
I read all your posts some about anxiety and if in fact you have seizures, stress and anxiety are major triggers so if you have those issues and I know this will be much easier to say but those issues need to be controlled as much as possible to help any possible seizure disorder.
I’m sorry I seem to have gone off on a tangent again sometimes I start and just can’t stop and still could go on and on but I will spare you that.
You take good care of yourself and I wish you only the best and by the way you have a beautiful country from the tiny bit of it that I saw I’ve been to Vancouver where I took a cruise and spent time in Victoria with friends who live there. In fact the day after I arrived is when the World Trade Center tragedy occurred. My next visit will be to the Lake Louise area. I understand it’s an exceptionally beautiful area.
Hope to hear from you,
Liked by Teresa, Volunteer Mentor
Hello Jake….I was diagnosed with temporal lob epilepsy in my 20’s… I’m now 72. It’s been a long journey for me. In the early days I couldn’t drive for 2 years. Thanks to A special friend and neighbour we got around. I have held a job as court stenographer, legal secretary, and over last 34 years before retirement an advertising consultant in radio, also voicing on air when requested.
Dilantin has been my medication for most of those years. Minimal dose of 100 milligrams for years, which was amazing. When I developed a seizure or what I called an aura, or feeling I was going to have a seizure I would increase my meds by 100 twice a day. Been in and out of hospital but that Has worked for me. Recently however I have started having spells or warnings in clusters. It’s almost like I’m going to have a grand meal but it stops. I’ve increased my Dilantin again. Thru this latter situation I’ve been in contact with a nurse Practioner who has worked in the field for over 20 years. We talked about the Dilantin, the effects it has had on me over the years and I am considering changing meds to lamotrigine. However, I am not a pill person, avoid meds at all costs, and one of the side effects of the drug is a rash, that can be life threatening. Right now I am afraid to make the change and at my ripe old age perhaps staying on an increased dose of Dilantin would be safer. Has anyone else used that drug successfully? Having said that, the Dilantin has leeched calcium from my bones, I have had two breaks, a wrist a few years ago and this past December fell and broke my hip. Full replacement. I also have lupus symptoms …they say created by the Dilantin. My retirement a couple of years ago was hastened by seizure like activity…I was on short term disability for 6 months and eventually decided not to return to work. I would most likely still be working but for the seizure like activity. That I believe was brought on by stress related issues and needing to increase my Dilantin meds. Sorry to rant and for this long message. The one thing I do know…despite epilepsy, I have held a job, raised a family, been active in theatre, so it hasnt beat me. I remember starting an epilepsy support group years ago and hearing tales of folks not leaving their homes, and fear of ridicule….we’ve come a long way from those days thank heaven.
Liked by Teresa, Volunteer Mentor, Leonard, mxyzptlk32
Hi Leonard…. just posted long message to Jake…new to this so hope you can read it. The comment re hitting the wrong keys, is not due to the epilepsy, it’s the small keyboard on the iPad! I’ve typed for years, But on a large keyboard. iPads are convenient But too small.
I just replied to Jake and Leonard. I’m new to this… will my reply’s be open to the group. Would like that just not sure the reply’s would be there. And do I have to give the reply or post a title?
Your replies will be seen by everyone in the discussion group. I'll invite @johnbishop to this conversation. He can help you understand better about posting on Connect.
Liked by Teresa, Volunteer Mentor, Leonard
Hi @maggiek, you're doing a fine job of using the Mayo Clinic Connect website.
When you reply to a person's message, you do not need a title. If you start a new discussion like this one, you need a title. You'll notice that I changed the title of your discussion so that it reflects what this discussion is about "How to use the site".
You can learn more about replies, who sees them and where to find them in this article:
– Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
If you ever have any questions about How to Use Mayo Clinic Connect, see the link at the bottom of any page to see the
Get Started on Connect guide https://connect.mayoclinic.org/get-started-on-connect/
You have successfully followed the Epilepsy group. If you click the +Follow button of any group or post a message in a group, you are added to the Member list.
You can learn a lot from your profile. To see your profile you can click your avatar in the top menu. In your profile you will see which groups you are following and a history of the posts you have made. More about your profile is explained in this article:
– What can you learn from a profile: yours or a fellow member’s? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/what-can-you-learn-from-a-profile-yours-or-a-fellow-members/
To see all the discussions in the Epilepsy Group, click this link https://connect.mayoclinic.org/group/epilepsy-2bb359/
Liked by John, Volunteer Mentor, John, Volunteer Mentor, Teresa, Volunteer Mentor
Hi @maggiek, I see that @colleenyoung has already provided some good tips for you in her response to your post. One thing you mentioned that you thought is part of your problem is using the "virtual" keyboard on the iPad's screen. I have an iPad also but don't use it much for Connect. One thing that does help when I'm using my iPad is a keyboard accessory which makes it more similar to a laptop or typing on a regular keyboard. You can get them through Apple or less expensive ones through Amazon or other sites, you just need to read the reviews and make sure it's specific to the model of iPad you have.
Looks like your a pro at maneuvering around Connect.
Looks like we both have had E for a long time. I’ve had it for 53 years 8 months. lamotrigine is usually an amazing medication. I assume the rash you are referring to is Steven Johnson’s syndrome which is indeed dangerous and can be deadly. However there is a DNA test that can be done to tell if you will or will not get it so you might want to talk to your doctor about that. I’ve never heard of being on such a low dose of Dilantin. I took five different medications for quite a while which accounted for 30 pills a day. I know of countless people on lamotrigine. It sounds to me like you’re having focal aware seizures which are the same thing as auras. lamotrigine Works for Focal & Tonic-Clonic seizures. If I were to switch to lamotrigine I wouldn’t be concerned about an allergy/rash although it does happen in about 8% of the cases and about 0.04% of people develop the very serious Steven Johnson syndrome. Dilantin can also cause Steven Johnson syndrome, Rashes are associated with many of the
anti-convulsants. You may want to discuss with your doctor testing possibilities to see if you’re going to be allergic. I was on a much higher dose of Dilantin but after about 25 years it became unstable and I had to change. Doctors also believe that is what caused my peripheral neuropathy. Personally I also think my Phenobarbital played a role in that as well. I changed to Carbitrol which is an extended release brand name of carbamazepine.
What type of aura symptoms do you have taste, smell, sight, Déjà vu, speaking problems or something else?
Has your doctor ordered a vitamin D level on you? Numerous seizure meds deplete vitamin D. I took 6000 units for a long time to get mine built back up now I’m down to just 2000. If you’ve never had this test ask your doctor to order it. Vitamin D is essential for your health and not just your bones.
The Stigma problem is better but it’s got a very long ways to go.
Liked by Colleen Young, Connect Director, John, Volunteer Mentor, Teresa, Volunteer Mentor
I had all the mistakes that I could find corrected so the post above they should be more readable now. I’m sorry for all the mistakes. Hopefully it’s better now.
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