Law and Order: MS Victims Unit

In the multiple sclerosis system, a chronic disease affects two separate yet equally important groups; the brain and the spinal cord. Because of this, often it’s hard to tell the difference between MS and non-MS related events. This is one of those stories. Dun dun.

PROLOGUE

When is being tired not just being tired? Often, in the world of MS, it’s hard to exactly know where the tired ends and the MS begins. Am I exhausted from MS fatigue or did I just not get enough rest the night before? Did I not sleep well because of some environmental factor (room too warm, kiddos waking up during the night) or because one of my regular MS-related ailments (pain, spasticity) kept me up? Sometimes, the mystery ailment better resembles Stephen King novel than procedural drama, but the clues remain ambiguous and the conclusion might never be written. 

SUNDAY SPINNING SUNDAY

A few Sundays ago, I woke up around 6:00 and knew instantly something was wrong. The entire room was spinning (and no, I didn’t enjoy any drinks the night before!) Vertigo is pretty common in my world. But this was different…more extreme.

I began to sit up and instantly felt like I was going to pass out. Literally. Everything was going dark. I fell back onto the bed in shock. When I tried again to move, I was hit with the same terrifying feeling of blacking out.

My wife Angela heard me struggling and asked if something was wrong. I was unable to form a coherent response. Everything was spinning. I was being overcome by a cold sweat and a fear that the world was coming to an end.

Was this a bad case of food poisoning? Or was this MS paying me yet another visit? (Dun dun

DAZED AND CONFUSED

Over the next two hours, I unceremoniously dry-heaved. Blood vessels on my nose popped from the intensity and frequency. I couldn’t even hold my head up.

And so the day went. Yes, day

By noon, I requested my Kindle to try and research online whether this was food poisoning or something worse. Bad idea. By this point, I had gone delirious and ended up diagnosing myself with some “exotic” condition. I believe it’s called “fainting”. Did you know there is a long, scientific term for fainting? Well, I found it. I was out of my mind, thinking this was some new affliction that was hitting poor saps like me. I’m not sure if Angela shut off my internet access or if I just eventually gave up.

I was in that bed for almost 12 hours. When I finally managed to get up, I felt like I was floating on air. I missed my family and forced myself to head downstairs, give our two children a hug and let them know that Daddy was going to be ok.

EPILOGUE

So what happened to me on that Sunday? Was it food poisoning, MS…or both?

Meanwhile, life moves forward. But I find myself wondering, will it happen again? Next week? Next month? Or was it just some awful luck related to something bad I ate the night before? 

For those of us living in the world of MS, we could use a few “Law & Order” detectives to help navigate these common and oft-recurring mysteries.

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Michael

Michael Wentink, Blogger

In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at mjwentink.com and follow him on Twitter.

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    28 Comments

  • Avatar
    Ldg1230  Apr 21, 2014 11:39 AM
    Did you ever figure out what caused your episode? I keep a journal of all things MS or otherwise and I share with the dr. Have you shared that with your neuro? I live in the San Antonio area. And I have found me unable to get up sometimes. Best wishes on your MS journey.
    Lisa
  • Eva Marsh   Apr 21, 2014 1:51 PM
    One reason for fatigue is dehydration; it lowers blood pressure and can result in fatigue ... another is the producing the energy required for healing. Efforts to move direct the healing process, and of course, sleep is essential to replenish energy. Been there, done it.
  • PeninaD   Apr 21, 2014 3:47 PM
    MENIER'S DISEASE? It's like extreme vertigo.
  • Sharon   Apr 21, 2014 4:06 PM
    In the last 15 years i have been diagnosed with M.S three times and also have been told I have been mis-dignosed. I was told if lesions are not showing on the MRI you do not have M.S. Could anyone help me?
  • Sam   Apr 21, 2014 4:10 PM
    Sharon -- Have they done a spinal tap with you? I know that MS can show in spinal fluid. It did in mine.
  • Karen   Apr 21, 2014 4:39 PM
    Dehydration's always blamed. On a day when I overdo I always take in a few liters of water and I still feel wiped the next day. Yes , even after eating well. For me it's always the day after being on my feet for too long.
  • DogMomma   Apr 21, 2014 4:46 PM
    I am a huge SVU fan and the beginning of this made me giggle. I, too, find it hard to separate whether a symptom is MS related, or some other ailment. I hope everything is better with you now. Sounds like food poisoning to me.
  • Samantha   Apr 21, 2014 4:47 PM
    Hiya Sharon.

    I've never got a spinal tap, but was told that if the lessions were recurrent and appearead on an MRI it was definitely MS.

    Sometimes if you're not having an "episode" the lessions do not show up on the MRI. That's why I got them done while in the middle of the chaos...

    Best of lucks!
  • Celeste   Apr 21, 2014 5:13 PM
    Sharon--I have been diagnosed and undiagnosed as well. I, however, have only brain lesions which show up on an MRI. I have no spinal lesions and my spinal tap was negative. My current doc doesn't believe I have MS, but can't tell me what I do have. He has decided that the lesions are due to migraines. I don't have migraines. Like Michael, it's hard to tell what symptoms might be MS or something else. Lisa mentioned keeping a symptom journal--I think that is something I should do also. I can share it with my NEW doc.
  • Karla   Apr 21, 2014 5:15 PM
    How to know if tired is MS or not...it does not matter how much or little sleep I get, or whether I am hydrated...the last couple months my tiredness will not go away at all. I cannot even stand long due to fatigue. My mind seems very awake but the body just does not want to move. I am beginning to feel my muscles weaken as well. I have lesions on both the brain and spinal cord. My lesions show whether I am in a flare-up or not.
  • Karla   Apr 21, 2014 5:15 PM
    How to know if tired is MS or not...it does not matter how much or little sleep I get, or whether I am hydrated...the last couple months my tiredness will not go away at all. I cannot even stand long due to fatigue. My mind seems very awake but the body just does not want to move. I am beginning to feel my muscles weaken as well. I have lesions on both the brain and spinal cord. My lesions show whether I am in a flare-up or not.
  • Susan   Apr 21, 2014 5:41 PM
    Vertigo and MS. MS and vertigo. Ummmmm? I just had a flare-up of vertigo almost an exact year after last one. Allergies related? MS? Dunno! ENT referred me for Vestibular Therapy (w/ PT). Now my head is back on straight and I have an exercise to try at home if it rears its ugly head again.
    I have pretty much given up trying to decide on labels,( MS, P.O.T.S, diabetes, liver, asthma) because I still have to figure out how to keep moving. My mantra is Thank God for the good days and Pray for the rough ones to be over.
  • Celeste   Apr 21, 2014 7:19 PM
    Who knows what may have caused what is happening to this body, I have stopped trying to guess whether it is the MS or not. When the room spins or I stagger or slur my speech, I say I am on a natural high and go with the flow. Just saw the cutest saying. "Someone Just called me normal... I have never been so insulted in all my life." It is kinda neat being different with out really having an explanation.
  • Brenda   Apr 21, 2014 7:25 PM
    I too suffer sporadic vertigo. Had to leave my nephews wedding early because of it. I was very disappointed. I have a difficult time determining when I don' feel right from a full blown vertigo attack. I get extremely nauseous, break out in a cold sweat, and can't move my body.. I now carry my Ativan which helps if I catch the vertigo early enough. Horrible symptoms and difficult to distinguish from other reasons for nausea. Kept a journal when symptoms first started, but the doctor could not draw any conclusions. Good luck i wish you well:)
  • Ryan   Apr 21, 2014 10:14 PM
    I too have problems with MS and Vertigo.. I have lesions on the brain and spinal cord, but a negative spinal tap... I was still diagnosed with MS and the Neurologist stated that about 70% of MS patients have the common strand... Years later I have started to develop thyroid problems which is most likely caused and associated with MS... This is where vertigo comes into play... My TSH levels with thyroid will elevate extremely high causing a disaster within my body including vertigo. Get checked, it helped a bit...
  • deb   Apr 21, 2014 10:28 PM
    Migraines, memory issues, speech mixups, numbness, stumbling, and "inside out fatigue" that no amount of rest will cure... some lesions but not difinitive...Lupus and Sojgren s often mimic MS. Don't let the medical community blow you off. It's all very real. My daughter has primary progressive MS. We're quite the comedy act trying to tell a story together.
  • Sha'ron   Apr 21, 2014 11:28 PM
    I was diagnosed with MS back in 2011 after losing feeling from the left side of my arm down to my left hand. I have both active and inactive lesions in my brain and down my spine. A lot of you have mentioned the spinal tap, but my neurologist told me that's only one of the tests to determine. There is also an eye test that they can do. Basically you stare at a checkered screen with electrodes on your head. It's supposed to measure how long you brain takes to register information. My doctor said I had a 3 second delay, which confirmed the MS. Hope this helps!
  • pam turner   Apr 22, 2014 1:33 AM
    I have a nephew with ms, but never realised the extent of the illness till i read this and your testimonials..he always looks sooooo healthy, and works incedibly hard to secure a future for his partner and their little family...thank you all so much for educating us who are fortunate indeed to not have it..God Bless you all ♡♥♡♥♡♥♡♥
  • Cheryle   Apr 22, 2014 3:53 AM
    I had the same symptoms of dizziness and dry heaves and being unable to get out of bed. I ended up in the hospital with an extreme case of vertigo from my ms. I now take meclezine all the time.
  • Renel   Apr 22, 2014 10:51 AM
    I use baclofen prophylactically to keep muscle spasms/spasticity at bay. If I take even a little too much baclofen, vertigo follows which leads to dry heaves.
  • Renel   Apr 22, 2014 10:51 AM
    I use baclofen prophylactically to keep muscle spasms/spasticity at bay. If I take even a little too much baclofen, vertigo follows which leads to dry heaves.
  • Chris   Apr 22, 2014 4:35 PM
    Brilliant! This happened to me back in 2005. Fun times feeling like I was constantly falling even when I was flat on my back and vomiting every few minutes. I wound up in hospital but blood work showed nothing and I was diagnosed with what an ENT called benign positional nystagmus. Three years later a similar episode lead to my MS diagnosis. Yes, MS sure could use a few L&O detectives to figure it's various MO's out.
  • mks   Apr 22, 2014 6:27 PM
    I have spinal and brain lesions and have had a positive spinal tap. Vertigo, dizziness, is a way of life for me. I can't lay down flat or turn my head without extreme dizziness. Try to find ways to deal and let your body learn to compensate for it.
  • Patti   Apr 22, 2014 10:12 PM
    The longer you have MS the easier it is to tell the difference. I've had it for nearly 30 years. Most of the time I know what's going on with my body. The key is listening to your body when it tells you to ''take five.'' If you don't, it WILL make you pay.
  • marsha   Apr 23, 2014 11:04 AM
    Over 46 years with MS, your symptoms sound like a drug you might be taking. I discovered dizziness and vertigo from Baclofen, I changed to zanaflex(tizandine)Some anti steroidal drugs have same side effects. Or it could have been food poisoning. Not everything is MS related.
  • Trisha  Apr 23, 2014 11:52 AM
    I have been diagnosed since 2007 with MS. I too try to decipher if my symptoms are MS or something else. It doesn't really matter anymore because even if its not MS symptoms, a little bit of stress on my body and the "typical" MS symptoms start happening too. I have been so dizzy that I cant get up and get sick from the vertigo. I don't have an exact term for it - but - I also get a feeling like I'm being pulled in a direction..like I'm metal and a magnet is pulling me sideways or backwards. I started to pay more attention, and usually have the BAD episodes after I have over done it. The problem is, sometimes I don't feel like I am over doing it when doing something. Its not until the effects show up and then it can take a couple of days in bed trying to recover. Not everything is MS - that I agree with. Keeping a log is a good idea (as another has said) but I also communicate with my neuro when "weirder than normal" things happen. I cannot take most medications because they make me extremely tired and / or dizzy. The side effects are multiplied times 10 for me. I am very sensitive than most to medications. I did not used to be - this is something that has showed up in last few years. I also seen thyroid issues mentioned - Beta Seron has been shown to affect the thyroid. I went through a year of all symptoms of hypothyroid issues and yet my T3 & T4 levels were still in normal (lower side) range. I am now on Tecfidera and my thyroid is acting normal again. So, check the side effects and "possible" side effects on all meds - that could be contributing to the symptoms described without showing up as anything else. Hope my long winded entry helps.
  • kd   Apr 28, 2014 3:39 PM
    SHARON---please read! I have been diagnosed with MS for 15 years. I had a clear spinal tap at the time of diagnosis and NO LESIONS om my brain or spine. I STILL have NO LESIONS. I am diagnosed with RRMS. I have all the symptoms. I usually lose vision in one or both eyes every couple years but it comes back. I also have leg weakness, numbness, tingling, balance problems,fatigue...excuse me I mean FATIGUE! I have been to five different neurologists, all with the same dx. Because I have no lesions, it was difficult to get this dx, and when I see a new doctor I always have to explain that this is a "clinical" diagnosis. There is a lot more to the story, but I do want you to know that you can have this dx without lesions or a positive lumbar puncture. I also have "lhermetts sign" (sp?) if you are not familiar its a jolt or lightning type sensation that you can get when you bend your head forward. It only lasts a few seconds, but for months at a time. I was told that this symptom is only associated with ms. If you want to compare stories more I am glad to try and help. my email is kdesane@gmail.com
  • Linda   May 13, 2014 9:29 PM
    I know what you mean. I'm not sure if I'm anxious because I feel MS symptoms... Or if I'm feeling MS symptoms because I am anxious. Just my quiet moment thought.