Epilepsy or MS

[mooers777]

I need help! After almost a year of dealing with the doctors in my area I am no closer to finding out what is wrong with me then I was in the begining of this problem. For the past few years I have been having symptoms of seizures and many other symptoms including: Dizziness, Tremor, Migraines, Numbness of my forehead and top of my head, It travels like when you get the goose bumps only slower, My left thigh has been numb for the past 2 years i have no feeling there, sometimes it travels all the way to my ankles, I have lost partial feeling to my fingers. But, the numbness on my forehead and thigh have never gone away!
I have migraines atleast 4 times a week if not everyday. I will sometimes forget what I am doing or stare off and notice nothing including someone talking to me. I have had symptoms of a seizure and been unable to move, my husband has had to pick me up and carry me to the living room. At times my body feel as though it is someone elses and I am trapped it is uncomfortable and scary. I smell things that are not there sometime good things but, most of the time it is not a pleasant odor. I have a tremor or seizure most everyday. I ache in my joints and/or limbs and back sometime to the point of crying. I have had a CT scan but it showed no difference in the gray-white matter but did find a small retention cyst in the right maxillary sinus. I cannot afford a neuro or MRI. My NP wants me to have a EEG but there again I must see a neuro. I have no insurance. I am a 26 year old with a history of head trama due to abuse from a step-father.
Any info or ideas would be wonderful.
Thanks

[Rena705]

It's nice to know that you might be of some little help to someone and I do appreciate you saying that you will be there for me as well!  This is a long road and it is FAR from over and there are so many bumps along the way it helps so much to know we have a friend to help us over the bumps.  Take care honey and we will talk to you soon!

Lots of Hugs,

Rena705

[mooers777]

I love this place! I don't think I have ever come across another site that has so much information and friendliness.
I believe I am going to be a life time member.

And just so that you know if the two of you ever are in need of a friend I am here for you.

Thanks for listening to me while I go through this "woe is me" time.

And I do remember "Dragnet".

[Rena705]

Hi mooers....how are you feeling today?  You know, Amyloo has a point!  Don't tell any dr. that you see that you are having seizures because they probably won't believe you.  I as well didn't lose control of my bladder during my night time seizures and while I didn't remember anything afterwards it was because I was sleeping at the time.  After a Grand Mal Seizure as well, it takes so much out of you and your body all you want to do is sleep and you can sleep for hours!  It sounds to me that these incidences could be a petit mal seizure or something of the sort so that the symptoms are not the same as a "regular seizure"!  

Amyloo...bless your heart you have thought of everything haven't you!  tee hee  I agree that mooers should contact the MS Society closest to her and see what they can do as far as getting her an MS Neurologist.  You are not going to get anywhere spending your money on a doctor that doesn't know anything about what you are going through that is for sure and then you will be stuck.  So pick your doctor carefully and we wish you the best of luck!

mooers777 you are welcome to come here and rant and rave all you want!  We have all (I think and I know I have) done it and it is a healthy place to vent your frustrations and hey, maybe you might get some help in the bargain too!

Keep in touch with us please and let us know how you are making out and we are open 24/7 for all rants and raves!

Take Care and Lots of Hugs,

Rena705

[Amyloo]

Ok, I hate the fact that anyone who needs healthcare cannot get it in this country.  What the .........!
You shouldn't have to worry about cost.  Sorry.....Ok, call your local MS society and get a doctor's name.  These people were great with me on the phone, and even answered questions for me regarding specifics on the doctor I was going to call. (ie; how do others feel about his care?  etc.)  I will pray for your search.  Also, when you see someone new, maybe just don't mention the word "seizures"?  Just explain symptoms with a few, well chosen words.  (They seem to like that best.  "Just the facts, ma'am.")  A little Joe Friday there for ya, don't know if you remember that show.  God bless you, Amy

[mooers777]

Thanks for posting on my question!
I have decided that even though I can't afford a neuro I have to go. But, if he or she tells me what the last one did I'll freak out! The last neuro told my that "It is not a seizure unless you fall to the ground urinate and have no memory of what happens, And he added that I should see a shrink."

I am Not lying he really said this to me! My husband was in the exam room with me and I silently had to plead with him not to attack this so called doctor my NP sent me to, who as it turns out was not a MD, He was a DO whatever the heck that is.
He didn't even spend twenty minutes with me and I had a bill for over $400.00.
He also dismissed everything I told him about.

I wonder does Canada have doctors that want to cure everything with a so called Shrink? I hope not.

What happened to all of the good doctors? You know the ones that really care about their patients?

Sorry for ranting. I guess I just need to talk to someone about these things that are a thorn in my side.

As for my husband he has been there for me through everything even when I wanted to give up and pretend this was all in my head.

Glad to have someone to listen.

Thanks again Rena705,
                                     Mooers777

[Rena705]

Hi mooers777, I am Rena705 and I can relate to some of your symptoms.  I presented with Grand Mal seizures back in 1993 before I was diagnosed with MS.  I only had them at night so only my husband was aware I was having them until I woke up in the morning and then look out!  The pain in my body, and I mean all of my body was unbelievable!  It even hurt to move my eyeballs sometimes and all of the muscle in my body were pulled.  It was a really scary situation!  

As for the smells that you are smelling, it may be an "aura" that you are having which can be a precursor or warning that you may have a seizure. As far as I know it usually is a burning smell and it is really strong so you can't miss it.  Myself, I had voices in my head instead of a smell.  It was HORRIBLE!  It was as if there were thousands of people talking at the same time and it would get louder and louder and then taper off...usually that night I would have a seizure!  Go figure!  I remember having these "voices" in my head back in high school in the 80's and I told my Mom about them and I will never forget the look on her face of terror and her telling me not to be silly! ha ha  I think that she thought I might be schizophrenic and it really scared her but then it went away until 93'.

I did have various aches and pains back then but I just knocked most of the problems up the seizures and MS was the last thing that I thought it would be.  I have been on a drug now since 1993 (Tegretol) that has controlled my seizures and up until now I have been living a normal life.  I had a relapse in February of this year and am now working through what is to be done next.

mooers777, seizures due to MS are extremely rare from what I have heard but they can still be a precursor to the disease as I have been told.  I understand that SSI is hard to get and as you said "the hardest to get accepted" but you really need to have these symptoms checked out a.s.a.p. if for nothing else than your peace of mind!  I think that if you can get to see an MS Neurologist you will be starting on the right track and I believe you need to get some help right away!  Seizures can cause a lot of damage to your body and they are not to be fooled with.  

I wish you all the luck in the world with your problems and I only wish there was more I could do.  But Please, be proactive with your own healthcare and if you keep pushing you will get to the place you want to be!  I am traveling a similar road as you as far as physicians go but being in Canada I have the luxury of REAL healthcare!  It sounds as though you have a husband like mine and take full advantage of that and get him to help with finding the help you need!

Lots of Hugs

Rena705

[mooers777]

Yes, I am in the states. I live in the south east. I have just started the paper work for SSI but I happen to live in a state that was proven to be one of the hardest to get accepted!
Due to so many people applying that have nothing worng with them. Which is a sad thing. Plus, It doesn't help when the doctors don't know for sure whats wrong with me. I have gone to for different doc's and gotten for different opions. One was an idiot Neuro, One Md, Two NP's. I don't know if I should laugh or cry.
I have been put on Depakote and Dilantin which has eased the seizures to a point. But the are a lot of side effects with them.
I would like to thank you for taking your time and replying to my post, I hope to hear from you again. Merry Christmas!

[Heather3418]

Welcome!  You write such a sad story.  Bless your heart..you have been and are going through so much.  

Where do you live "Mooers?"  If you are in the States, might I suggest that you go to your Social Security office and apply for possible disability?  You may be able to get disability, which are certainly entitled to and then be eligible for State health insurance assistance.

I'm glad you posted.  There are many here that will be able to answer alot of your questions.

Heather