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486038 tn?1300063367

Ok, so here's a timeline and lists of tests run... HELP ME!

I know this is long. I'm sorrry. I'm just looking for answers.

If you read my earlier post a few hours ago, you will perhaps understand better.

(my parents are begining to believe that perhaps I am depressed along WITH something else). I don't know. I guess I will just do whatever and take the meds and then if they work and treat some of the symptoms, great. If not, well we still have a problem here. At this point I don't think another Dr. is an option, my parents seem set on trying to do whatever Dr DWI wants for a few months at least to give him a chance. Perhaps he has something right, he claims the Cymbalta will help with the pain and increase my congnition. If so, I'm happy.

Tests that have been run: x-rays of lower spine, rheumatoid test (7 antibodies out of the 12 needed to be positive). Celiac diseasa test, and a CBC, and I know at some point I had a thyroid test done that was ok.

I have been dx'd with gastroparesis, IBS,  LOW estrogen, chronic migraines, TMJ, scoliosis, severe asthma and allergies, and hypermobile joints (they didn't know why my joints hurt).

Ongoing Symptoms TIMELINE OF BEGINNING OCCURANCE

2006

Balance problems. I began to fall backwards, grasping for objects, often banging my arms into doors, walls or anything else nearby. This seemed to go in cycles

Numbness/prickling in hands when in cold water, weather, air-conditioning.

Spring 2007    

Lisping when I am tired- this is noticed and commented on by others.

Fall 2007

Tingling in hands. This occurs after water runs over my hand or something has lightly rubbed over it.

Nov.  2007

Jerking or jumping muscles in my legs, hand and face

Dec. 2007

Left eye-lid drooping-(when tired I often tilt my head to counter this)

Jan. 2008

Itchy feelings/burning sensation under skin when I get warm. Begins on my back and neck traveling down limbs when I am in any type of warm weather, clothing, or a shower. This feeling now LINGERS after I am cooling down.

April 13th 2008 (Flare, symptoms gradually improve. Doctors start to look for Dx. due to ON)

· Intense Weariness

· Stumbling because my feet feel “heavy”

· Balance problems increased- I am tipping backwards several (5-6) times a day when I’m standing still and falling backwards when I’m tired.

· Right Eye- eye pain, blurriness, and white lights through the night

· Weakness in hands increased -Dropping small objects daily

· Memory trouble such as naming simple objects, simple addition, and getting lost driving in familiar parts of town.

· Shocking in my left hand every time I touch something (the lighter the touch, the worse the shock)

· Jerking/jumping/contracting muscles in my feet, legs, hand, face and eye muscles has increased and occurs often throughout the day- this is noticed by others.


May 26th 2008 Beginning of Flare
(symptoms gradually improve, some stay)

Change of gait. Woke up May 26th with heavy legs, and after that had difficult walking and improved slowly while shuffling.

Buzzing feelings in my arms, legs and face? I feel numb in those areas sometimes but at this point I just feel like a buzz runs through it, like there's something crawling on it for a few seconds.

My knees are starting to buckle for a week, I'm used to falling backwards but it's a little frightening to me when BAM, I'm just falling straight down because me knees gave out. (this improved after first week of flare)

Swaying when tired. My head would also drift back or to the side until it rested on my shoulder or someone asked me “what’s wrong?”

Hands twitching and curling toward myself. My arms will also twitch- I can't tell you in what area... becuase the whole thing moves, and you can see if move if you are looking at it. Sorta like a rapid jerk- it looks like my arms just jumped on it's own.  

For a few weeks my face was twitching on the one side, but that's gone now, and I'm glad, but for several weeks when I pronounce certain sounds the one side of my face sorta twisted slightly and they come out all funny sounding.

Difficulty spelling. I'm leaving out letters or switching them all around and I now have strange handwriting that most people can’t read.

New pain in my feet and bee-stinging sensation in my arms. It feels as though something is poking straight through the bottom of my fingetip into my fingernail.

June 1st, 2008
An episode of severe jerking in church that scared my friends and I almost fell out of my chair.

June

Difficulty with perception? For example: I was brushing and blow-drying my hair one morning and realized that the blow-dryer was too heavy for my left hand (I have a tiny one) so I switched it to my right hand and my brush to my left hand when i picked them up the second time. WELL- the brain never got the switch, and I held the brush above my head and WHACKED my head with the hairdyer, obviously in an attempt to brush my hair with it! I wanted to cry but decided to laugh becuase it was rather hilarious- but I hit it hard enough to hurt for a long time.

June 11th
Water running down leg feeling.

June 22nd,
Increased weariness.

June 23rd – 25th  
(hospitalization)

Gait change. IF I try to pick up my feet I can get them up but then I end up taking tiny short "plopping" steps that dig into the ground. It seems to go better if I sorta swing my legs out and around in a short shuffle.

New pain in legs. Is sometimes triggered by something rubbing on it, and is sharp a burning and goes all the way through.

Difficulty understanding where I am in relation to other things. I hit my head HARD on the car frame.

Hard muscle spams, or muscle jerking spells. Starts with that electrical feeling in legs and then the entire body jerks once or more.

Stuttering. Repeating a word over, and over.


IF YOU'VE MADE IT THIS FAR... THANK YOU!!!

ok, so what should I be asking to be tested for?

Should I just say, ok... take the MRI of head and C-spine tomorrow, and then if nothing shows up take the Cymbalta and then just wait for something else to happen?

* note, the cymbalta has GI side effects, and the Dr. said to watch out for that. I have enough GI trouble as it is, so this may not work out.

~Sunnytoday~
14 Responses
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338416 tn?1420045702
Sunny, I feel the same way you do - I'm in a good mood most of the time.  For no real reason, other than that I'm awake, I suppose.  When I'm putting up with new symptoms, sure I'm a little anxious, and worried, but it does last only a few minutes.  (My lesions are all on the right side - periventricular, right frontal horn, and right cerebellum.)

As for pushing for the T-spine MRI, Quix can answer that better than I can.  Honestly, I do think the MRI will show something in your brain, from the symptoms you describe.  I also think you've probably got a lesion in your T-spine.  

But that's just me, and I have absolutely no medical experience whatsoever - just what I've learned from obsessively googling my own symptoms!  What can I say, I like to learn stuff, even if it is weird medical stuff.

Me, I'm opting for grilled pork and zucchini, and lots of vodka-soaked watermelon.. yum!
Helpful - 0
486038 tn?1300063367
Quix... does that mean if I don't have lesions in my C-spine or brain I should still look in the T-spine? The neuro says NO unless something "lights up" on the others. Yes, the loss of balance was tough... i've done a lot of falling and learned to try to think "lean on things" when I'm standing. I also have grabbed many people while fallig and have turned all shades of red. Oddly, the balance has slightly improved because now that I'm walking the "penguin walk" with my legs apart wider and swinging my upper body to move them I tend to stand in a much wider stance. It has helped a tiny bit, but I still tipped backwards this afternoon. I'm used to it now I suppose. (then I hit something and howl)

Thanks for telling me it isn't just depression.... I guess that helps. I do think if the medicine doesn't give me to wicked of side effects I'll be ok. The doctor told me I only have the 5 lbs to lose and he warned me there were GI side effects to add to my already list of problems in there. I start it in the morning... and he said I'll feel "weird" for four weeks. Watch out forum... I might start posting weird things! Grin. I certainly hope not.

Jenn- I will say that I do have moments where I feel like the world the way I know and want is ending and that life is rough... but that is usually when another symptom has appeared and I'm trying to cope with it and it only last a few minutes (trust me, I tell myself to get over it, a lot of people have it worse)....and yet i am usually over all very cheerful and I love to laugh and look for the "sunny side" of things. Perhaps that's why he said "hidden depression".
- - - - - - - - - - - -
As far as the celebration... I finished that round of finals, let the clinicals BEGIN!!

I personally want grilled chicken, icy watermelon, and  I think I'd like a KK donut too, if I can find one. (I'm happy, I passed and all I've got yet is papers, oral reports, and LOT's of clincal work)

HOORAY!
~Sunnytoday~

Helpful - 0
Avatar universal
<>

A sightly different perspective -- maybe she's just "over it" in the sense that it's been months and months and months of symptoms and no real diagnosis. So she's at the "I don't have the energy anymore to get totally frothed up about this. For pete's sake, just diagnosis me with SOMETHING that makes sense!!!!"
Helpful - 0
338416 tn?1420045702
I've heard somewhere, can't remember where, that damage to the left side of the brain can cause people to be chronically depressed...  While damage to the right side can have the opposite effect - being cheerful in the face of obvious problems.

Personally, SunnyToday, you strike me as being more cheerful than you should be!  You don't sound depressed at all - just worried because of all the weird symptoms.  
Helpful - 0
147426 tn?1317265632
Hey, Kiddo!  I read your timeline with real sorrow.  You have really been putting up with a lot for the last two years!  The loss of balance is severe, isn't it?

The episode of ON gives you a likelihood of developing MS in the next 5 to 8 years of about 40%.  This neuro should be noting that and resolving to follow you very closely if the MRIs are negative.  The brain and the C-spine are your best bets for finding lesions, but occasionally the T-spine will give the best answers.  

I'm thrilled the new MRIs are on the better machine.  We will just have to see what they show.  

About the "depression."  Everyone above is correct.  With what you are going through and just finishing up your schooling, it would be a miracle if you didn't end up depressed.  Will depression cause ON, the severe balance disturbance, the limb jerking and all the rest?  NO, it does not.  It causes vague discomforts, fatigue, magnifies pain that is ALREADY there and disrupts sleep.  What you are describing is NOT depression, but it is very possible that an AD will make you feel a little better and that counts for something.

You know that I am frustrated for you.  So much so I can't even describe it.  We will wait on the MRI results....

It is celebration time, you said.  I want mint chip ice cream with hot fudge!!!  And a hot dog on the grill!!

Quix
Helpful - 0
486038 tn?1300063367
Tomorrow is my finals.... I will try to sleep well. I had a friend here from out of town for the day... so last night was a bit late.

Yes, I hope you will all "celebrate" with me tomorrow afternoon.... I officially finish all my papers and online classes and test the last week of July, but tomorrow is a big day... (hopefully) no more in-class finals- only online work and clinicals!

~Sunnytoday~
Helpful - 0
338416 tn?1420045702
I've never had an MRI that was stronger than 1.5 Tesla...  The stronger the better, of course, but at least it will pick up the larger lesions.

Good luck on your finals!  Get plenty of sleep!
Helpful - 0
Avatar universal
We will celebrate in spirit!

Mercy
Helpful - 0
486038 tn?1300063367
just got back from my MRI, guess what... I found out this this one is a 1.5 Tesla (sp?) and the last one I had was much lower, possibly a 1.0 or .5 stregnth. Hmmm... perhaps not much would show up then? I asked and she said the nearest one that is better is a few hours away and it's a 3.0

Did ya'll have trouble with holding still? I mean, my scan took 1 1/2 hours according to mom and my legs would spasm or jerk every so often and vibrate funny like. This is normal for me, but I guess I hoped I could avoid it in the MRI. Hopefully it won't harm the pic quality.

You've got a point about the lumbar scan, maybe I was looking for something else? who knows, the brain isn't very bright these days.

As far as being embarassed in public, I walk like a penguin, my head drifts backwards, my legs randomly jerks, I say the wrong words at the wrong time or lack the right words, and stutter... I've learned to smile as beautifully as I can at those who choose to stare and see if I can make them smile back. Somtimes it works, and other times they are too-self absorbed to smile back, or at least see that I can be joyful no matter what.


Although, I will say, it's alot easier to smile when you are having fun.

For example: tearing through wal mart on those scooters... they either have FAST or off. I say that I will give myself a case of whip-lash if I don't watch out. A lot of people stare when you are riding those things, but you just grin right back and soon the whole store is full of smiling people, and when you see them in another aisle they will often smile at you first.

Ok, I've got to go and study, I've got a friend coming for a day... and I've got two more finals to conquer on Thursday. Too bad you all aren't around to celebrate when I finish....

~Sunnytoday~
Helpful - 0
Avatar universal
Oh Sunny my heart just aches for you - I know how difficult this is - please keep pushing the doctor and your parents for more expert opinion - getting lost in town is very worrisome, and I'm not an expert, but this sounds to me like something that really needs further investigation and certainly beyond the Depression Aspect, although with all this going on, anyone would be depressed.

Mercy
Helpful - 0
338416 tn?1420045702
I've never had the OCT test done, so I wouldn't know - but it sounds like that's what they gave you.  So that's good...  

Now there's no point in doing a lumbar scan, because the spinal cord stops at the bottom of the thoracic - I think they call it the cauda equina, which means... horse tail?  There's a bundle of nerves which attaches to the end of the cord, and runs all around your lower back.  Google some images up of the spinal cord, and you'll see what I mean.

That bathroom business...  Leakage, urgency, and frequency are all signs that the bladder has been affected.  It's possible that your only lesions are in the t-spine, but I suspect you've got some in your noggin as well, because of your facial symptoms.

And there's lots of embarrassing stuff connected with MS - or at least, embarrassing when it happens in public!  Ah, well...  could be worse!
Helpful - 0
486038 tn?1300063367
'optical coherence tomography' sounds perhaps a bit like a test they did where they dilated the eyes and took pics of the nerve. (believe). I forgot to list this test and the VEP. The VEP was positive, but I don't know how much or why.. the neuro only said it was but that he would expect it to be more positive than it was in my case. (I just knew I was forgetting some things) I'll probably remember more later.

Yes, the MRI is with and without contrast.

However, he says "if nothing lights up" on the head and c-scan than he won't do a L and T scan. Nothing more.

I do have urgency and "running to the bathroom"... I wasn't sure if that connected or not. I've had a few weeks were this was almost unbearable and had trouble with controlling the bladder... and yes, it was tied into my flares, or whatever they are. I figured this had to do with the UTI's I had last fall... but this has stuck around. Gracious, what else embarassing is connected? (Grin)

Thanks for the explanation of proprioception. I just have to watch out... hitting ones head isn't safe.

~Sunnytoday~
Helpful - 0
338416 tn?1420045702
I should say proprioperception is *perception* of where your body is in space.  
Helpful - 0
338416 tn?1420045702
MRI of head and C-spine is a good start.  He's giving you MRI with and without contrast, right?  Muy importante.

See if you can talk him into giving you a T-spine as well - your weak legs could be because of a spinal cord lesion.  Are you having any bladder problems (urgency, difficulty controlling bladder, or going several times a day?)  If you've got a lesion in the T-spine, it will affect your proprioperception (where your body is) and balance.

If nothing shows up on the MRI of head, t-spine, and c-spine, then you're back to square one.  However, with your symptoms, I would expect SOMETHING to show up!

I know that antidepressants are good with cognitive problems and neuropathic pain, especially drugs like Lyrica.  However, with cognitive problems, neuros usually recommend Aricept, which is a Alzheimer's drug.  I've heard good things about it.

I don't know if you can get it, but there's something called 'optical coherence tomography' which is basically a look at your optic nerve.  It'll show atrophy of the nerves that won't show up on an MRI.  It's been shown to accurately predict MS activity, so you might ask for it and see what happens.
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