How did your MS symptoms present themselves

[socrates2k1]

I will go first (since I started this Q?)

I don't know if my story is unique or not.

I took a fall off my back porch, back in July 2009, this resulted in severe head trauma (closed head injury, concussion), severe neck trauma (possible broken neck), a dislocated left thumb, and a severe chest contusion.
I was in the in the hospital for 4 days, evaluated and sent home, with a neck brace, left hand in a brace, and a walker.

I could barely speak, had little memory (short term or long term), couldn't walk more than a step or two, etc.

I was blessed to have a Physical Therapist, Occupational Therapist, Speech Therapist, and an RN visit me, in my own home, 1-3 times a week.

I eventually got my speech more manageable, with "word sticks" very common.  I could walk, with a walker, but still blacked out often.  When a black out occurred, I would gracefully sit down on the ground, wait a bit, then get up and try to head where I was originally going.

I had two instances whereby my arms began shaking (severe tremors) and I would hyperventilate, both times I was rushed to the ER, where they gave me diazapham (to calm me down).  They weren't sure what the cause was, but they ruled out a seizure or stroke.

The visits came to an end, but the "fun" was not over.

My Neurologist sent me for an MRI, which resulted in showing a "walnut sized" cyst in the middle of my brain, and 12-16 lesions.  His response was, lets wait a couples of months and see what happens.

I went in for a 2nd MRI and VEP test, the VEP test came back normal, but the 2nd MRI revealed more cysts and more lesions.  So, my Neurologist sent me for a spinal tap and blood work.

The spinal tap and blood work confirmed MS.

So, within 5 months (I fell in July and was diagnosed in December), I was told I have MS.

My symptoms really didn't present themselves until after my fall, which the doctor wondered, did I already have MS and it caused my fall?

A different doctor, who I saw at the Trauma Unit of the hospital, thought it would be extremely bad luck to take a fall, have a "closed head injury" (i.e. concussion), and find out I have MS, all at the same time.

I guess, I can count myself blessed to have found out I have MS, after reading the roller-coasters that so many of you are on, or have been on.

So, how did your MS symptoms present themselves, and how long from initial symptoms were you dx with MS?

[Deb61]

I'm such a ding-a-ling . . .  I left one of the main symptom that had my sister's eyebrows raised . . .  I woke up several times with right arm paralysis.  The paralysis would go on and off again throughout the day.  

Also, I had numerous UTIs---the year before my diagnosis I had 4

[Deb61]

It is confusing as to what symptoms started when, as there is more than one health problem.  Plus, my memory is not the greatest.  I have felt sick for a very long time.  I do think that the thyroid problem had something to do with this.  By the time it was figured out that I had a thyroid problem, I had probably had it for years.  I hear that many people with MS have thyroid problems.  

Numbness and tingling was one of the earliest MS symptom that I can remember; however, severe untreated hypothyroidism can cause neurological issues.  Later on, I began developing these health issues (some of which aren't attributable to MS, and most are on and off and many are even gone):

migraines
vertigo
double vision
severe eye pain which sent me to urgent care--diagnosed as infection and given eye drops which did nothing.  I spent the entire summer with blurry vision
severe fatigue
esophageal spasms
tinnitus, later on hearing loss (after MS diagnosis)
severe weakness in upper arms--worse on right
severe pain in feet--especially on the right--eventually mobility issues
high blood pressure
eventually optic neuritis (after MS diagnosis)
severe cognitive problems
muscle spasms and pain
heat intolerance (now I cannot be in the heat for any period of time)
tremors
swallowing problems & choking
mouth ulcers
fasciculations
eye would stick closed (not from eye gunk)
trigmenial neuralgia (after MS diagnosis)
bladder incontinence (thought to be woman's issues at the time)
bowel incontinence (after MS diagnosis)
weird feelings of something crawling in my scalp when nothing was there
itching
burning sensations
ice pick pain
constipation (much better after thyroid medicine)
depression
mood swings
lack of motivation to do anything (not related to depression)
unable to climb stairs
falls--several times down stairs
stumbles over feet
dropping things over and over again
unable to hold hair dryer
eyes crossing
eyes twitching back and forth at night
color saturation problems and blurriness (optic neuritis)
seizures --first time after giving blood; then I noticed I would have twitching constantly when I was sleeping and would wake up
loss of flexibility--I cannot  lift my leg off the ground more than a foot and both of my feet have very little flexion--especially bad on the right
Raynaud's
heart palpitations

My history is confusing and I have a hard time remembering what came first.  It is also laborious trying to write it all out . . . But, I haven't felt good for most of my adult life.  I started seeing a doctor about 15 years ago.  I think the symptoms that I can't contribute to hypothyroidism started about 3-5 years prior to my MS diagnosis (I think).  

I had other diagnoses--fibromyalgia (neuro says is a bogus diagnosis), possible lupus (ruled out), reactive arthritis (which I highly doubt--pain is not in joints), inactive TB, migraines, high blood pressure.  I was even told that everything was psychological and was referred to a psychiatrist.  

My sister began getting sick.  After comparison of symptoms, we went on to try to figure out what was wrong.  Eventually, my sister had a fall which sent her on neurologist and neurologist.  It was discovered that she had lesions on her brain stem.  MS was diagnosed.  She convinced me to see a neurologist.  

I was seeing a headache neurologist at the time (I was having migraines).  Prior to the headache neurologist, my GP sent me to get an MRI of the brain to rule out a brain tumor.  The MRI was done on an open machine (notorious for being weak), without MS protocol (no contrast and thick slices).  The MRI was negative.  Anyway, I went to a neurologist close to where I live.  He didn't run any tests (LPs or further MRIs).  He looked at my two year old MRIs completed on the weak MRI machine and said that I couldn't have MS at my age.  Lesions would have shown up by now.  I told my sister, she again convinced me to see a neurologist--a different one.  

I set up an appointment with her neurologist.  He ordered all sorts of tests.  Lesions showed up on the MRI.  He ordered Provigil to help with the fatigue.  Six months later, more lesions and growth of the lesions that I had from last one he ordered.  RRMS was diagnosed and he had me select a DMD.  I chose Copaxone, and I'm doing better these days.  

Long story--I hope I hadn't put anyone to sleep.  (yawn) Sorry.

Deb




  

[DawnYM]

It's amazing how different you all started out, I often wonder when my whole thing started (I'm still un-dx) it could have started as early as childhood, I just thought I had a lifetime of depression and was just unable to learn... I remember walking as a child and just not having any energy, feeling very fatigued and heavy, sometimes just laying in the grass just too tired to do anything else... Another weird thing is at the age of about 6 I copied my step father and syphaned gasoline out of a car and swallowed a lot of it, this was early 70's when lead gas was the norm. . Went to the doc and he said since I was puking there wasn't anything else to be done, so I went home, I wonder what they would do theses days. Anyways, in my early teens was always so unenergized but always pushed myself to do things, my mind has always Been foggy, Sometime better, it's like sometimes my mind works if I'm in a groove and all of a sudden wham it's gone and I can't get back on track... It also seems lve felt so wonderful pregnant and dragging after giving birth.. I had my last child when I was 28 by the time I was 30 I started taking care of horses And finally got into really good physical shape for the first time in my life, i became very lean with muscles all down my arms, legs torso, I even had a four pack (just never got the total 6 pack) I could do 25 push like a man!!! I could carry 80lbs on my shoulder anywhere! THEN it happened 4 years after my first bout in my life of really feeling alive, I fell off a horse in the fetal position rite on my back, that day I was fine, I got back up, finished my 3rd and last lesson, continuefd to take care of the horses and after a couple of months I started to get headaches and another couple of months of headaches went to neck aches and after that i had to stop with the horses and my neck got so bad I ended up with frozen shoulder (adhesive capsitis) and my neck would get so bad I couldn't move it anywhich way, especially to look up or if I bent forward at the waist and looked up it was the worse!!! It took a year and a half or more till I was better but never the same... Or it started later with the achy legs and lower back that I still get, that was about 8 years ago I was 36... Who knows when or why or how anymore for me!!!Lol... It's still just all amazes me how some of us suffer and we still just keep going!!! My heart just goes out to all of you here!!!!! Muah!!!!

[Quixotic1]

My story was rewritten recently.  I thought my symptoms has started at age 52 with sudden weakness of my right leg.

In 1999 at age 47, I was blissfully practicing pediatrics.  I caught a weird virus which gave me horrible nasal congestion and a croupy cough.  After about a week of this I developed the deepest fatigue I had ever had.  I was able to press through each day, but suddenly one morning I awakening with really horrible vertigo.  I went to the hospital for hydration and meds, because I had a horrific headache, too.  Went home the same day.

The next day, apparently I called the ER and talked to a good friend.  He noticed that I was confused and disoriented.  He sent the EM's and they found me on the floor in my bedroom, still on the phone.  I was admitted and was having frequent grand mal seizures.  Whole work up, yada, yada.  The next year was spent on work up, going back to work, being readmitted to the ICU with apparent seizures.  I had a couple falls with the seizures with concussions.  The neurologist suspected Psuedo-seizures which are a complex form of psycho-somatic episode that looks like seizures.  

The vertigo was non-stop.  I also had clear positional vertigo.  I wrote all of this up and sent it to Dr. John Epley.  He told me to come up to Portland immediately.  He diagnosed bilateral BPPV, found a Perilymph Fistula and surgically repaired it.  He also diagnosed Chronic Hyperactive Labyrinthitis.  (Chronis inflammation of the balance center of the inner ear.)  I also went into a monitoring seizure room and had 5 days of EEG and video monitoring where they were able to show that my episodes were not seizures.

The neurologists at this center were arrgant and cruel.  They coldly told me that now that it was proven that I was luney I should "straighten up and stop having the episodes."  That was very helpful.  

After Dr. Epley repaired the fistula I was improved enough to return to work.  I was still having severe fatigue, but we all though it was due to the vertigo.  I practiced for about another year, but the fatigue was so severe, that my life was reduced to sleep -> make rounds -> office -> sleep over a long lunch -> make rounds -> go to bed.  Also I began noticing a problem remembering things or capturing data that was told to me.  The fatigue got worse and worse and I kept shortening my offince hours (thus lowering my salary.)

One morning after a horrible night in which I was called in for a C-Section at 1am, another at 3:30 am and another at 7:30 am, we had the emergency C-section of premie twins.  I took the sick little Twin B and my Family Practice colleague took Twin A.  Twin B started have apnea, and grunting.  His O2 saturation started going down.  I saw it, but my mind did not respond to it.  It's not that I didn't know what to do, I just didn't respond.  I didn't feel any need or urge to.  The nurse (bless her heart) just said, "Ooh!  Let's bag this little puppy."  I was able to shake myself and get the baby stabilized.  But, I realized that, had I been alone, I might have let this little one slide into a serious condition.

I turned around, turned the baby over to my colleague, and went home to sleep.  I left medicine shortly thereafter.  I still break out in a sweat remembering that morning.  I knew that my fatigue and fading mental accuity were too severe to let me stay in practice.

It was at that point that I went out on disability.  I still though my whole problem was vertigo and some sort of psychiatric problem (the psuedo-seizures).  Dr. Epley treated me for the next two years, but I never improved.

Then in, the spring of 2004 the fatigue hit a new high.  A few months later I woke up one morning unable to lift my right knee.  Incontinence began a few months later.  Another year passed, and I had an episode of being unable to lift my right arm.  It took about 8 months or so to resolve - but I still had residual weakness at the shoulder.  My right leg has very slowly worsened in the last 5 years.

So, that is the new and revised version of how my MS presented.  I have to say, that including the vertigo in my view of it makes all the sense in the world and removes some of the shame I feel for the pseudo-seizures.  I think some of the BBPV was from the two concussions I had from falls during a psuedo-seizure.  I look back and see that the pseudo-seizures were most likely a psychiatric manifestation of MS and the vertigo was classic MS.  Of course, all the MRIs (3 or 4) during the early years were negative.

Quix

[HVAC]

During my yearly exam in 2007 my GP found I had something wrong on the neurological exam. This started a three year oddessy of Doctors and tests. I did not understand what they thought was wrong. I was waiting for them to say there is nothing wrong. I thought they were full of it.

Now I understand I have had PPMS since childhood and did not know it. I have had double vision, learning problems, emotional problems, balance issues, headaches and a gait that gets a little worse over time.

Essentially I have had a slow progressing disease for over 40 years. Life was always hard but I had no choice but to adjust. I was expected to do what any other person could do.

I learned tricks to drive or play sports with my vision, I graduated with honors even though math and reading were hard and I could not understand directions on a test,I learned to live with headaches that made me vomit starting in childhood, I learned to balance on high ladders when dizzy, I am not fast but I have great endurance even with pain.

Every case of MS is different.

[slightlybroken]

Wow! It does make you wonder if the fall was just a fall, or was it MS all along. If the fall wasn't caused by the MS, then the fall did throw everything into play. At least that's one way to look at it. That is a very unique story. Thanks for sharing. I, on the other hand, don't have a completed story because I'm not officially diagnosed as of yet, so I guess you'll have to wait on that one LOL. I'm been waiting for at least 3 years for a diagnosis of something.

But your story does remind me of what happened to my mother just recently. She has a dog that scratched her hand. The place wouldn't heal. My mother is a R.N. and thought it could be something nasty, so she went to a dermatologist. They took some samples and it ended up being skin cancer (Squamous cell). The dermatologist then removed all traces of it from her hand.

She decided after that was over, she would go in and have the dermatologist, maybe take a look over her entire body, just in case something else was going on that she didn't know. The dermatologist looked her over and found some more suspicious places, but this time it was even worse. One of the samples that they took ended up being Melanoma, the most aggressive skin cancer.

The good news was, it was only in the site of the skin and no where else. The ironic part is, if my mother had not got the Squamous cell skin cancer, she would have never went in to be evaluated for a whole body check, and the Melanoma would have went undetected. This would have possibly lead to her death. So having Squamous cell skin cancer literally saved my mother's life because it caused her to be evaluated for the whole body check.

I guess everything happens for a reason.