Introduction, could it be MS?

[KatCaughtABigFish]

Three years ago I was in a rear end collision.  On the second impact, my car ran into the car in front of me, and I blacked out for an unknown time.  An hour after the collision I went to the ER with pain radiating down my left arm.  When I had an xray, I was made aware my shoulders were stiff towards my ears.  I do remember having neck pain that day, and previously experienced continual shoulder pain that was bad enough to see a doctor for.

Nine months after I still had the pain down my left arm and was plagued with headaches 70% of the time.  My left arm felt like I could only partially speak to it, like it was a ghost arm or partially not there.  A majority of the time they were not the kind of headache that I would classify as a migraine.  I was given an MRI and found that C4-C5, C5-C6 disks were ruptured.  It was not felt that I needed surgery.  After two rounds of physical therapy.  I was given an epideral steroid injection into my left shoulder.  Three months after the steroid injection the pain down my left arm resolved by 90%.  My headaches were unaffected.  

A year later, still headaches, and still the disconnect with my left arm.  Stiff shoulders were also a continuous problem.  I saw a chiropractor, and immediately recognized that I could twist my upper body more properly, but it didn't fix any of my other complaints.  MRI of my shoulder and my hand.  Nothing wrong with my shoulder, but torn cartilage was seen in my hand.  I had an EMG which was negative besides a slight nerve change in my left hand, this test was very painful for me.

Two years after, still headaches, and still the disconnection with my left arm.  I've lost some strength in my left arm.  I drop things I'm holding in a half second laps of control.  I have a good month, and a month where my headaches almost feel normal, so I try to go back to the university.  The headaches are just as bad, sometimes I do the 40 minute drive and have trouble remembering what building I should go to, or what time is what class.  One day on my drive to class the left side of my face goes up in a grimace.  I can't make the look on purpose if I tried.  If I moved my face it would release, but would go right back up.  I went straight to the school's clinic.  They tested me for a stroke and some other condition.  They gave me an anti-inflammatory shot in my bum.  Which resolved the three hour grimace in a couple of minutes.

Unfortunately the facial grimace continued to happen.  The headaches were horrible.  I was having the same disconnected aching feeling into my right arm.  I could no longer write more than a sentence without having to stop.  It was difficult to keep pressure on the paper and move my hand at the same time.  I had some complaints about my sight, but no one medical took notice.  I had a second spinal MRI done and found the disks were worse, and a third disk is bulging;  C4-C5, C5-C6, C6-C7.  I saw a nero-surgeon.  Who reviewed my MRI and said that there was no nerve involvement with the bulging disks and referred me to a pain clinic.

About 2 1/2 years after the car accident.  I woke up on a Monday, to my husband in the shower.  I experienced intense muscle spasms.  My head turned into my pillow, with my chest arched.  I couldn't speak.  It paused for a moment and I flipped onto my back.  Continued to have really bad spasms.  I went to my GP the next day, who dismissed it as a panic attack.  That Wednesday I was driving to the physical therapist and my face started it's grimace, and continued after I was there.  The physical therapist was using a physical neck stretcher and later would hook me up to the tens unit.  Mystified by my facial grimace, he tried to make it go away.  While I was hooked up to the tens unit(it physically shocks you), I had the same muscle spasm, turned head, except it was worse.  They were worried I was having a seizure.  This time it didn't stop.  My PT was in the hospital so they took me to the ER.  Valium didn't stop the muscle spasms.  They put me on a Valium drip which almost knocked me completely out, it did slow down the muscle spasms.  They put me in the MRI, the muscle spasms did start back up towards the end.  So they re-Valiumed me.  The muscle spasms, continued and they transferred me to a larger hospital.  They gave me something that knocked me out and I slept all night.  I was woken up in the morning muscle spasms continued, but were not as strong.  A tech gave me an EEG, which later I was told was negative for seizures.  The flashing light made me uncomfortable and set off my muscle spasms.  The ER doctor told my husband that it was psychological and suggested I go to a psychiatrist.  They gave me round yellow pills, I think they were cliazapam, and they did help with the muscles spasms but knocked me out.

So I went to a two week out patient.  I just wanted to get better and wasn't going to let my ego get in the way of it.  The psychiatrist put me on gabapentin and propanolol, and increased it as time went on.  I never did put together a connection between my emotions, thoughts, anxiety and my muscle spasms and headaches.  Some weeks were better than others, and at first I thought the gabapentin was doing the trick.  It became harder and harder for me to drive, as the driving set off the muscle spasms.  I had a bad event in a movie theater, then the muscle spasms began affecting my legs, they would tighten up and I would walk like tippy toeing, I felt springy.  The psychiatrist kept raising the gabapentin and propanolol.  I went to the pain center, I began getting trigger point injections in my shoulder and neck.  They helped loosen me up and made life easier, but they don't last long.  I went and saw a neurologist during a particularly bad episode, he said it was not organic, based on exam.

Shortly after, I told my psychiatrist that I was in a severe depression and he acted like I was only just starting to express it.  He answer was to raise the propanolol again.  The second day, I had horrible mood swings, felt horrible, was having rages.  Something in me decided to check my blood sugar and it was 66.  I now believe that the medications were aiding in driving my blood sugar into the dirt.  I stopped the propanolol and weaned off of the gabapentin.  It's been months, the severe depression went away and improvement in headaches did not go away with the gabapentin.  I've learned that triggers for my muscle spams are drops in blood sugar, light, movement, movies.  I started taking magnesium which helped me keep my blood sugar level.  Then started taking potassium, which I've seen the most improvement in attempting to control the muscle spasms.

The eye issues I've had that developed over the last year.  Are most noticeable on light walls in the distance.  It has taken me a long time, to pick up on, that the light aspect of my sight is blurry.  It never goes away, but sometimes it is better than others, it is worse during headaches.  With the facial grimaces I also noticed that the left side of my face swells.  A more recent symptom is random nerve pains that feel like a needle, and random repeating twitches.  I saw a neurologist recently and his guess is MS, fibermyalgia, or it's just in my head.  I'm waiting to get an evoked potential test.  The last really bad headache I had, I felt around my head.  It was nerve painful on the left side, but not on the right.  I had described to the nerologist that my headache felt like my head is burning.  What does nerve pain on the inside of your head feel like?  Mean while the pain center sent me to get another epideral steroid injection in my left shoulder.  That was a few days ago, and I feel like it has helped me out quite a bit, which just tells me more that this isn't a conversion disorder.  

I need to talk to a therapist after going into a doctor's office and get dismissed so easily.  I would like to hear your thoughts.

[SarahL2491]

stress will trigger many things and emotions can produce physical symptoms.

you do have a complex "stew" of things going on and you may have to rule them out one at a time.  The neurontin may or may not help with your pain, for me it is a wonderful drug, for others it does not work at all.

Has anyone done a cardiac work-up on you?  It might be helpful to rule that out.

Best of luck to you and we hope it works out.  

[PastorDan]

I would certainly concur with Lulu54's advice, but I will add that I've heard epilepsy attacks are often triggered by flashing lights of a particular frequency range.  Unfortunately I forget that range, but I know that fire alarm strobes are nowadays specifically made to blink slow enough that they won't trigger seizures.  Just one more thing to ask your docs, if that hasn't already been investigated.

I will pray for your speedy diagnosis, and for relief after all you've been through.

[Lulu54]

Hi Kat, your history is so complex I wouldn't begin to second guess and offer an opinion on your particular situation.  None of us here are doctors or acting in a way to offer medical advice.  

We do know that conversion disorder is sometimes offered as a diagnosis when the doctors are stumped by the physical symptoms.  CD or MS, you deserve to have the correct diagnosis and treatment - I hope you will continue to work with your doctors and your therapist toward this answer.  

I'm sorry I can't offer you a clear cut answer.  Please feel free to ask again any questions you might think of,
Laura

PS we have a great health page on Conversion Disorder, you can read itat
http://www.medhelp.org/health_pages/Multiple-Sclerosis/So-they-think-youve-got-conversion-disorder/show/1137?cid=36