My story, symptoms complete what do you think?

[Sonaya]

Ok Im going to repost this so that I can update everyone with my story, symptoms and put it all into a short version. Since Ive sort of been here a month or so now, Ive posted on some of my symptoms and how similar they are to you all etc but heres everything.  I would love your thoughts, suggestions etc on what I need to do next.
I am undiagnosed 5mths since had initial "incident"  Sept 07. Very Sudden onset of stroke like symptoms. Prior to this, healthy, happy, loads of energy.  Only way can describe it was like something switched in my head, loss of hearing in one ear, blurred vision, speech problems, inability to think straight, weekness in legs, dizzyness, worst headache of my life (no history of migraines ever). All happened like a flick of a switch totally out of the blue. Suspected stroke, brain hem, meningitis. Tests ruled all the above out thankfully Spent 3 days in hospital. Mentioned Vestibular Inner ear problem, shingles,  MS, Lupus, Spinal Stenosis/disc compression.  OVer the months progressive symptoms of more blurred vision, (one time went completely blind in one eye for a few secs) motion sickness/vertigo, although not so much dizzy spells, just some triggers that can cause it,  facial numbness, tingling, pins & needle sensations, extreme muscle aches and pains and weakness. Loss of balance like Im going to fall over or my legs are going to give way. Stiff Neck,head pressure, eye pressure, ear & nose pressure like liquid filling up.  Clear liquid running out of nostril like CSF leak? Heat /burning sensations, chest pain (like angina)profuse sweating,  memory problems, just cant think like I use to, stare into space spells, extreme fatigue. Muscle spasms, twitching feet, legs, arms, face, eye, cheek, twitching with recent uncontrollable jerking mainly leg and arms, triggers similar to epilepsy seizures but not consistent. Unofficial diagnosis is Familial Hemiplegic Migraine with aura, although most of the time I dont get headaches, just the auras, yet sometimes I do.  The very recent symptom is palpitations in sleep with shortness of breathe. . Hot days seem to make muscle twitching worse, yet cold days make muscles ache & pain worse. So far all tests have shown nothing. MRI without contrast brain and spinal, LP CT Head, CT Sinus, Dopplar carotid arteries, ecg, heart stress test, bloods. Thyroid, B12 all ok.  Not seen neuro yet seeing a general physician who has no time for his patients.  Having an eeg tomorrow. If EEG is normal physician said will refer to neuro. Going to see my own GP to get monitor for the palps.  I stopped work in Jan because it was so debilitating, back at work now and energy levels are not good. Not on any meds although should be taking something for high cholesterol, Im not a big meds taking person.

Thats me, I cannot believe I managed to wrap that up into what looks like half a page LOL
Oh by the way the time here right now is 9pm Sunday evening for those that want to know time difference.  Night everyone Im having an early one. Thanks for listening.

[Rena705]

We here realize that you and all of the rest of us for that matter are going to go through stages of different emotions that we can't seem to control...

You need to understand honey that it is perfectly ok and we are here for you...we understand the feeling of anticipation and gee maybe this will be the test that will have the answer for me and the worry that it won't be...

We are here for you honey and be emotional as you want...it will probably be good for you to release some stress!  Be it through crying, vocalizing, punching a pillow, going in the basement and having a good loud scream...go for it ...

The best of luck with your test and don't forget that we are with you all the way ok?

Lots of hugs,

Rena

[Sonaya]

Just apologising for the post without paragraphs.  I tried to cram in as much as I could so it wouldnt be too long a post.  Had absolutely no idea it would be a problem so I am very sorry for that.

I have been hanging here over the weekend I guess because I am nervous about my eeg today and feeling needy.

Stacey,  I also have been told it cannot be ms because of the length of symptoms.  As for MS mimics? who knows.

I think I have had only a very basic neuro exam, some of the terminology you girls use here I would not have a clue on.  Doctors tell me nothing about what they are doing, testing etc etc.


I am incredibly emotional today, and no I am not trying to be needy and get all of your attention, I am just worried this eeg is not going to show anything either and feel a little down.

I am going to lurk for awhile now until I can get some more answers and see whats next for me.  

[SOONERMOM]

I have so many  of the same symptoms you do..it seems like someone has come in and stolen the life you had.  It is unbelievable that all those things can happen to one person in 5 months!  (I am so sorry this is happening to you-most people won't experience all that in a lifetime.)  

I had  been told that because I probably didn't have MS because of the length of symptoms (since Oct) and the white matter lesions that I have are in the "wrong place".  Of course as time goes on I really question ..then WHAT else is it?  Are your reflexes "hyper", have you been given a basic neurological exam?

You know, one of my first problems was the migraine w/o pain.  I have always had migraines, but when all this started I couldn't tell I was getting one because either I was too numb or they had just changed into something unrecognizable.  I had one go on for a week and felt  horrible until I finally realized what was going on and took my meds.  (hard to explain to others)

I also had one episode of the palpitations in sleep, but didn't know what to make of it!  I had the clear fluid leak out of my nose(like water)???

They should definitely do a repeat MRI w/and w/o contrast for you.  I am waiting for that myself.  Have they  tested you for all the mimics? like APS-it is associated w/migraine.

I really hope that I don't have to quit work.  I have been having muscle issues mostly on the left side -I don't know how much longer  I will look "normal" as I start to walk differently.

Keep on it, make sure that you see a Neuro--hopefully a good one!  I really don't know why you  can't get referred just based on all you symptoms??  Let us know how your appt. went.  

Stacey