Recent Symptoms of My M.S. & Syrinx

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Generally, I try not to complain or let anyone know I am having physical discomfort. Certainly not my daughter or boyfriend. For some reason, even though they know it happens every now and then, I hate to: 1. complain, 2. appear weak to the two people who need me the most, and 3. in my humble opinion, nobody likes to be around somebody who is always moaning, grunting, and ailing. It is just human nature.

On to some interesting symptoms that I have been noting in my journal.

1. Searing pain in cervical spine running into base of skull.

The details: It feels like a hot knife has entered my neck – inside the spinal cord – and is moved in one direction up toward my skull. It is quick and burning. At the moment it happens and for a few minutes afterwards, I cannot turn my head. Maybe I have a huge fear that I will suddenly become paralyzed. Not to mention that brief searing pain makes it feel like a bubble has been injected into my neck making it almost impossible to turn my head for a few minutes. Then, as fast as the pain came on, it instantly disappears.  Once I have that two or three minutes of discomfort (I am being gentle here with my choice of words) for the first time on any given day, I know it will come and go throughout the day for many days or a couple weeks. Then BOOM! It is gone and I forget all about it until the next bout.  This “searing pain” is not to be confused with the general feeling of “sunburn” that overpowers my upper thoracic and cervical for weeks at a time. That particular “sunburn” pain is not an instant searing feeling and then suddenly gone. The sunburn feeling lasts weeks and then I usually have intense fatigue after a couple weeks.

As far as the “searing” symptom goes, I have had two opinions on it by two excellent neurologists: Neuro One is my regular guy and he said it could be a symptom of the Syrinx beginning a slow spread toward the top of the spinal cord. Or it could signify future scarring/lesions.  Neuro Two is the specialist who is a researcher out of Stanford who has a small practice in Los Angeles who mainly treats M.S. patients, but loves to research wacky diseases of the spinal cord. She thinks it is a muscular or vascular issue since my arms are getting weaker as time progresses. Possibly Syrinx related.

2. Arms have been stricken by some invisible force causing complete immobility and pain so bad it causes severe exhaustion.

The details: So far, this has only happened, to this severity, while I am asleep. Overall, my arm muscles have become much weaker and extremely tender. This is all day, every day and I have adjusted my life to taking great care of how I use my arms. However, I must share that I feel fantastic when I stretch, practice yoga, and lift free weights. Regarding this brutally painful occurrence that comes on only during my sleep, I am acutely aware of my arm pain in general and sleep with my arms straight out – picture lying in bed making a T. Or I sleep with my arms running down the sides of my body. Sometimes I need a reprieve and will gently bend them, slightly, and rest them on my tummy. If I bend them, they don’t “fall asleep” in the normal sense of pins and needles. They become almost instantaneously numb and cold. If you cut of my hand or arm, I would not feel it. (This is why Neuro Two feels it is actually a vascular issue or muscular in nature.) One night, I awoke to see the pinky finger on my left hand sticking straight up like it had been bent backwards. I couldn’t feel it, I just happened to see it. I pushed it back down to align with my other fingers. This did not hurt me until the next day when my pinky knuckles hurt. Anyway, back to this invisible force. I am awakened by a deep, DEEP pain where my elbows bend, exactly where you might have blood taken or an IV inserted. This pain is so excruciating that I am unable to lift my arms because my bicep and triceps and my forearm muscles are mush and if I try to move even a pinch, they are in such pain that it brings with it a wave of nausea. It feels like a screw has been drilled into the middle of my arm at the bend. The pain from that invisible screw is one of the worst pains I have ever experienced. Ever. I honestly cannot imagine a pain worse than that though. Now if I lay there, and be still and do not try to move my arms, the only pain is in that “screw”. If I actually try to reposition my arms, I cannot. It is as if they are paralyzed, but the muscle pain is absolutely horrid. Like a big, bad, giant is standing on my little bicep and crushing it. This is now happening more frequently. It first began about four months ago with only my left arm. Suddenly it moved to my right arm and it isn’t happening occasionally. It seems to happen more often – about once or twice a week. The more frequent the incidents, the weaker and more tender my daytime arms have become. You see, I have nighttime arms that don’t work and daytime arms that don’t bother me that much.

I just made a doctor appointment with Neuro One. Hopefully he will share some reasons why this is happening.

3. Blurry vision.

The details: My long distance vision has gotten so blurry. This happened overnight. This blurry vision will last for a few weeks and then one day I’ll wake up and my long distance vision is perfectly clear again. I have been to the eye doctor numerous times and he keeps saying I have 20/20 vision. When I try to get into the eye doctor during a bout of blurry vision, he is booked or by the time the appointment comes around my vision has gone back to normal. I eat carrots… Why is this happening??

Again, I will share this with Neruo One. I do think it is a symptom of being closer to my mid-40’s than not!!

I have some other symptoms that have plagued me lately, but nothing that worries me like the searing neck and paralyzed arms. So off to a delightful weekend!

4 responses

  1. Just stumbled across your blog while researching my chest pains associated with my syringomyelia and wanted to say hi. The more I read the more I suspect you have the same thing as me…I am male, in my mid forties and I was called a malingerer most of my life. Two years ago I was diagnosed with syringomyelia after it fractured my c6 vertebra, after surgery my symptoms progressed just like yours, exactly. Anyway, after 9 months of suffering, they realized I had chiari all along. After several MRI’s no radiologists, nor neurologists detected it. My neurosurgeon thought it wouldn’t bother me as it was less than a centimeter, it was 8 mm, it turned out that surgery should be done between 3-5mm, this is what causes the csf blockage, therefore the syrinx. My symptoms have not diminished, but they have not become worse since surgery. Chiari malformations tend to cause syringomyelia in adults in their mid forties, and it sucks because you never know what is normal age progression, or what is this torturous syrinx. Other people in their forties don’t feel this bad…

    1. Hi Keith,
      Thanks for all of your information. Now I’m curious as to whether or not I have Chiari. Wouldn’t it show up in the Cervical MRI or the brain? I’ve had about six MRIs of C-spine, Thoracic, and my head in the last 12 months. Do they do a special MRI for detecting Chiari?

      I just got some new results on Tuesday. My syrinx has not crept up or down. The neuro said fantastic news – as he was sure with my recent symptoms it had spread. He has asked me for the third time to have a consult with a neurosurgeon, but to have three opinions if the consult says to have surgery. My regular neurologist is against any type of spinal cord surgery for Hydromyelia unless it’s confirmed Chiari or a syrinx is causing incontinence or the pain level is unbearable. I said, “My pain level is unbearable.” He looked at me and said, “No, it is not. You still get out of bed every day. You will wake up one day and know unbearable.”

      I just started on Baclofen on Tuesday night. It’s only been 36 hours and 4 doses, but I already feel a bit more flexible, less muscle spasms, and it doesn’t make your head feel hinkey.

      Looks like it’s back to Google for me with the Chiari. I am so intrigued. My mother has hydromyelia only in her head and had a VP shunt put in 2 years ago. My teenage daughter has symptoms similar to mine that she has had for about two years now and will see a neuro in a couple weeks. Wonder if it’s in the family. Geesh, it’s very strange.

      So it sounds like your surgery would be considered successful since you haven’t gotten any worse. But I know that it can feel like a feeble attempt since it didn’t make it better. Very brave of you to go for surgery – my neuro has scared me away from that. Did you have symptoms in your twenties and thirties? Or did it come on suddenly? With Chiari in adults – do they think you were born with it? Do you now have a shunt? Sorry for all the questions, but you are a few steps ahead of me and I am trying to glean as much info as I can. At least I know from the handful of responses here on my blog that I wasn’t really abducted by aliens since there are other people with our symptoms and confirmed diagnosis. 😉

      Keep me posted and I’m glad you have a solid diagnosis. It must be a relief to know you aren’t imagining the symptoms and certainly aren’t a malingerer. That is the worst feeling. Anyway, I’m rambling now. Take care!

  2. Just to add a little more…I am sorry you are going through all of this, get a referral to a neurosurgeon, a relatively new one, they tend to know more about chiari malformations. My NS told me that no one else knows anything about chiaris, and he is right; I have been to the ER at several hospitals and they look at me like I am nuts. Do a little research and I am sure you will find that you have a chiari. Just sneeze and see if that triggers the searing blade up your spine. Chiari with syringomyelia is almost identical to MS, it was even suspected that I had MS after my diagnosis and they knew what it was…

    1. There is a terrific neurosurgeon in Palo Alto at Stanford. He has a new shunt-type of implant that is supposed to alleviate the fluid in the spinal cord caused by Syringomyelia. I’ve got an event to host in that area in July so I am trying to get a consultation with him. Maybe he’ll be able to see if this is a case of Chiari. Are you east coast or on the west?

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