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Jan 20, 2017 2:30 PM

That feeling when you have to collapse outside in the city to be taken seriously by hospitals and doctors..

Hi guys! I haven't been active here for a little while and hope you are doing good 😊

Since August I have tried to get a new check of my head because of epileptic-like seizures, but they refused because "it is only in my head"(aka mental issue)..
Today I got a series of seizures on a bus stop and someone called 911. The doctor at ER and the neurologist at the hospital said TODAY that this DOES NOT sound like psychological seizures.. FINALY!
Now I have to spend the weekend in hospital, but I am still really pleased with the fact that they finaly listened.

A rheumatologist is taking me in for a check after my dentist sent a letter about suspecting sjogrens syndrome. (They refused to see me).

I am trying to get my hopes up for an answer about my pain and other health issues.

Jan 20, 2017 2:42 PM

"Good" to hear you got some help. Sorry the circumstances. Hope the rheumatologist helps you.

Jan 20, 2017 2:52 PM

So happy that you are finally on the right road with your care. Hope you get some answers soon.

Jan 20, 2017 2:55 PM

Thank you ❀
I hope both of you are doing good :) Hugs!

Jan 20, 2017 3:45 PM

Sorry you're going this but glad Dr.'s are finally taking you seriously. Autoimmune diseases like Sjogrens can cause seizures or lead other autoimmune diseases that do. I have lupus which they think has caused my epilepsy.

Jan 20, 2017 3:52 PM

It would not surprise me if I have lupus.. Sjogrens might be there, but it does not cover everything..

Jan 20, 2017 4:14 PM

I assume that you have lots of joint pain amongst other things?

Jan 20, 2017 5:20 PM

I hope you find out what is going on with the health problems and find out the cause and get the right treatment for your the issues you're going through hope to hear from you and hope all goes well! God bless you! Get well!!!😊😊😊😊😊😊😊😊

Jan 20, 2017 5:57 PM

I had a "brainshake" a Few months ago. I described
it to my
doctors including a Neurologist. they all Looked at me Like I had three eyeballs.

Jan 20, 2017 6:29 PM

Even though I'm sorry how it happened, I'm glad that you're finally being taken seriously. I have lupus and just had 3 weeks of grand mal seizures and my neurologist threw in that they could be psychogenic. Today my rheumatologist said it definitely could be the lupus. Keep fighting, don't give up, make them listen to you.

Jan 21, 2017 1:53 AM

I usually answer "it is better to ask what is not wrong with me" when others ask what is wrong or about my symptoms.. Mostly joint pain and the other symptoms that I haveevto write down to remember(that includes bad memory after my seizures started)

Jan 21, 2017 5:54 AM

I have 2 autoimmune diseases, ankylosing spondylitis and primary Immunodeficiency. I know autoimmune can cause other problems, but did not know some can cause epilepsy. I'm so sorry you're having to go through this. Stay strong!

Jan 23, 2017 5:35 AM

I am still at the hospital and still after 3 days waiting for MR of my head. And the neurologist is going to put me in a long EEG, but it might be some time to wait first..
I was on a break from the hospital and went to a TGI Fridays with my fiancé and a friend. Ofc, I had to get 4 seizures there... And ended with hypoglycemia/low blood sugar when we arrived back.. 😐

Now my fiancΓ© and I worry about how I can function in my own life.. He can't be with me 24/7 to help me and come along to appointments. My life is now: walk between bed-couch, couch-kitchen and couch-bathroom, wait for appointments and try to eat. No work, hang out with friends(just some times), studies, activities or workouts.
And if I try to do anything, I end up in hospital at the end..

I really want to try some med for epilepsy or anything that might help me... Something that might stop the seizures so my fiancΓ© don't have to be anxious to go to work or let me be alone outside..

Jan 23, 2017 6:24 AM

IceAki, try to stay strong. You're right where you need to be right now (in the hospital).
Be assertive and proactive. Make sure you write down questions or things you want to discuss so you don't forget them when the doctor comes in. Ask about what meds can be tried in order to help prevent the seizures.
Sending you well wishes, healing {{{{Hugs}}} and positive vibes your way.πŸ€—πŸ’•

Jan 23, 2017 6:26 AM

The EEG will help tell them what's going on. They'll be able to give you meds. Take it easy.

Jan 23, 2017 8:16 AM

Be aware that you can have epilepsy and have a normal EEG. The longer EEG may be helpful but the advice given to write down what you want to talk about is good. Keep track of how you feel, your symptoms etc.

Jan 25, 2017 5:10 PM

IceAki, I hope you will get answers very soon. The unknown cause path is long and hard to travel for most of us. I have sjogrens & fibro. The sjogrens is starting to affect my hands, hips and knees. Lupus sometimes goes along with sjogrens, so I'm glad you will see a rheumy doc. Hugs love & prayers you will get answers and ways to reduce the symptoms! πŸ™‚πŸ’•πŸ™πŸŒΈ

Jan 26, 2017 2:38 AM

Thank you guys for supportπŸ’ž

I can update now that I am home and waiting for EEG that is going to lasts 2 days.
And the day I came home I got my this medical bracelet with info about my hypoglycemia(I am not diabetic). I am going to put epilepsy or non-epilepic seizure on the bracelet when I know. If it takes to long time I will get or make a simple bracelet with epilepsy on. Just in case.

FlappyLady81: I am so sorry to hear that β€πŸ˜“ I have truble with my hands, knees and hips(and more) and know how much that can affect your day-to-day life.

If the rheumatologist don't want to check I have a plan with my mother to go to a private rheumatologist. In Norway almost all rheumatologists follows just bloodwork and the "old guidelines"(I can also inform that the norwegian guidelines for vitamins and minerals has not changed since before world war 2..). Like last time: "Your bloodwork is fine and you are perfectly healty"..
This private rheumatologist follows more international guidelines and my primary doctor told me about him and told me to consider that option..

Jan 26, 2017 9:02 AM

I'm going you're home! I wear a bracelet with asthma and major need allergies on it. I've got to replace it due to so many new issues and changes. My new one will say "asthmatic, long term steroids, PoTS, see purse for med history & allergies". Lol it's to much for the bracelet anymore!

Jan 26, 2017 9:42 AM

FlappysLady81: How big bracelet do you need? πŸ˜‚
With my bracelet I got a card where I can write some more information and I have seen some necklaces and bracelets with a capsule to put a paper with information. Maybe consider something like that? ☺ Then you can add/change information easily

Jan 26, 2017 10:46 AM

Well, my medical diagnoses, medications I take, allergies, surgeries, & family history take up a full typed page each (on size 8-10 don't). I keep them in my purse and every doctor has a copy. As many of my doctors say, "I'm complicated." Lol. My info hasn't fit on any medical info card in 6 years. My hubby not kids can remember it, and with my fibro fog and dementia, is gate to forget something that might be important. *sigh*

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