Where to start.. 23 and at wits end.

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Hi, I'm just joining. My name is Brittany and I'm 23. I live in Florida and for the past 17 years I have been having extreme stomach pains that are debilitating. In the past 7 years something new has arisen. I am now having seizure like episodes after this stomach pain happens. I am completely conscious but I can't control the thrashing and shaking. I am unable to speak always when it is happening but I can hear people around me and know what is going on. My doctor diagnosed me with Pseudo Seizures and put me on Anti Depressants but I feel like this is so much more. I have lost 20lbs in a month because of the pain and agony I have been going through. It is ruining my life. I am looking to see if anyone has a doctor in Florida that could help me or does anyone have any suggestions? Please I am desperate.

Thank you so much in advance,
Brittany. :mad::huh::sad::?
 
Welcome BD,
There are quite a few Floridians here. Where in Fl. are you? I live in Clearwater. I have an excellent neurologist I can refer you to.
M
 
Hi Brittany, welcome to CWE!

It sounds like you may be suffering from abdominal epilepsy and/or epilepsy triggered by malabsorption issues. (There's a lot of research being done in this area, and there seem to be links between stomach disorders like coeliac and IBS and neurological problems). Some case studies are discussed here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3088003/
http://www.ncbi.nlm.nih.gov/pubmed/23559997
http://www.ijponline.net/content/39/1/76

You definitely need to see a competent neurologist/epileptologist. I hope you get some good recommendations from our members. You can also contact the Florida Hospitals with comprehensive epilepsy centers found here:
http://www.naeclocator.org/locator/resultsall.asp (scroll down to find the Florida ones)
 
I live near Tampa. I am willing to go anywhere at this point. I've had 3 episodes of whatever kind they are today [emoji53]


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I'm assuming that when you say your doctor diagnosed you, you are referring to your general practictioner (GP) family doctor. If this is the case, he/she is not in a position to be diagnosing seizures vs. pseudoseizures. There are unusual seizure types out there that are not recognized as being seizures by non-neurologists. In my case I was diagnosed with pseudo-seizures by a general neurologist, so even they are sometimes not experienced enough with more unusual seizures. It was not until I saw an epileptologist (neurologist specializing in epilepsy) that I was properly tested and diagnosed with epilepsy.
At this point there is unfortunately little that can be done until you are evaluated by a neurologist, preferably an epileptologist. If things get too bad you can always go to emergency. If you go during the day there may more likely be an on-call neurologist that can be called on for a consult.
 
Yes. I've seen a neurologist but he stated that he agreed that it was pseudo seizures. At 23 it has completely ruined my life. I have no life other then sleeping and crying :(


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Definitely push for a second or third opinion from a qualified epilepsy specialist. NOT from a general neurologist who thinks seizures can only be diagnosed via a positive EEG.
 
I'm sorry about everything. You must feel alone.

It's unacceptable the way you are being treated. As a patient you have to do what is necessary to get the care you need. What you aren't getting:

1. An appointment with an epileptologist and a VEEG. At the very least an epileptologist needs to see one of your attacks happen.

2. An appointment with a Psychiatrist that lasts more than 15 minutes.

3. Ongoing appointments with a Psychologist.

4. An appointment with a gastroenterologist.

5. Second opinions if necessary, especially with neurology.

A VEEG is really necessary to rule out epileptic seizures. Even then it's not 100%.

If you are having nonepileptic seizures, you need more than a few happy pills. Maybe the anti-depressants will help. Even so you are suffering for some reason, and they need to figure out why. It's not ok to ignore you like that. If they are psychogenic, you should be offered some counseling.

No matter what is wrong, you need help. Unfortunately you may have to do whatever is necessary to get it, and you may be ignored. If you keep at it though someone will come through.

If you can, try calling the Mayo in Jacksonville, FL. I am a patient at the Mayo in Rochester, MN. One thing I can say for certain about Rochester is that they have the best testing you can get. If there is a problem they will do everything they can to figure out what it is. Wherever you go, don't give up asking for help, and try to be compassionate with yourself.

:hugs:
 
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It's ok to cry when you are in pain, I've done a lot of it myself in the past year. I know what that's like. It's terrible.
 
I ditto that....
I can't understand why this not been done has she slipped through cracks somewhere it would also be good idea take someone with you who won't take crap
 
I checked with my insurance. Mayo is out of my network so on to the next hunt. Thank you guys so much for being so understanding


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Matthew74 is exactly right.....keep going until someone listens to you. It takes more than 15 minutes for a doctor to figure out what's going on with you. A neurologist who specializes in the treatment of epilepsy is the way to go. It sounds like you've really been through the shredder and it's no wonder you're feeling so depressed.
Remember that these physicians work for you, and if they aren't listening to you or helping you, find someone who will. It can take time to find the right doctor but it will be worth it in the end.
Good luck and let us know how you're doing!
 
Today I visited my primary for a follow up and it appears she may have washed her hands clean of me...I could tell that she was frustrated, oh but I am too. She wants me to take an appetite stimulant but I don't think she realizes the pain from eating is what throws me into seizures... It was basically like she didn't know what to tell me so she just keeps giving me more medicine. I am now looking into Shands neurological as well as the University of Miami. Will be trying to contact them today or Friday to get something scheduled ASAP. It's upsetting because I am finishing my last semester of my Senior year of college and am having such issues keeping up. Also my weight loss has reached 18lbs in one month as of this morning. Thank you all for being so understanding.


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Have seen a gastroenterologist recently? Since stomach/GI pain seems to be the root of the seizures, it would make sense to identify or rule out if there are any problems here first. Possibilities to explain the pain might be an ulcer, hernia, gall stones, pancreas problems such as pancreatitis, liver problems, irritable bowel, celiac disease . . . The list goes on, with some conditions being easily treatable.
 
Good advice from masterjen. A gastroenterologist will probably be faster to get an appointment with and rule out any GI issues, which a neurologist is going to request anyway.
 
Just saw the gastro 2 weeks ago. See him in a week for results of my biopsy from my endoscopy. It's a constant waiting game.


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