Shit - I Really Do Have MS!

My annual "check-in" with my MS neuro was last week. I finally got to meet "the new guy", "the new guy" who is "tracking" my disease.

*okay, maybe I have started this off on the wrong foot...a bit too sarcastic. Let's try this again:

My annual appointment with my MS neuro was last week. I finally got to meet the new doctor who writes me prescriptions for months worth of Rebif at a time (not one month at a time like the last guy). The new doctor doesn't wear a scrub shirt either.

*I couldn't help that one.

Carrying on...

I told the new doctor that I don't believe I have Multiple Sclerosis. He didn't bite...not even a nibble. Not even when I said it a second time. I guess it's a good thing he didn't bite, because he is trying to help me with my fatigue (unlike my GP), my jumpy legs, and my relationship with my Rebif.

And now for the rub - I no longer believe that I don't have MS. Thanks to the MS Hug.

The MS Hug is not how it sounds. Hugs make you feel comforted, loved, safe...the MS Hug makes you feel suffocated, scared. It can be painful, annoying and unwanted.

And I got my first hug, (at least that I noticed) last week. I thought that I was having a heart attack. It started with a crushing pain in my chest, right in between my breasts. The pain traveled to my left shoulder, and then down my left arm, and the chest pain radiated through to my back. It was difficult to breath: I was scared and agitated. In my mind, I was arguing with myself over whether or not I should call 9-1-1. The "event" lasted just under ten minutes.

Over the next few days, the pain returned to my shoulder and arm: it felt like my arm was asleep, but with pain. I have had tightness in my chest, and at times, it's hard to take a deep breath. The tightness in my chest is something that I have had with my MS from almost the beginning. But the pain in my chest, and chest pain that is accompanied by shoulder and arm pain is new.

I had heard of the MS Hug (also known as the Girdle). I thought that maybe the annoying numbness over my right ribs was "The Hug". Now I see that it is more funny (sometimes it tickles) and "The Hug" is not funny. It does not tickle. And without discussing it with my mom, I probably would have continued to think I had a heart attack (I even took an aspirin the second time), and been too embarrassed to call 9-1-1.

*the MS Hug is caused by a lesion on the spinal cord
*tiny muscles in between each rib go into spasm (nerves control muscles)
*feelings can happen anywhere in between the waistline and the chest (rarely up to the neck)
*worse during fatigue or stress
*can last for minutes or weeks

 So - it finally hit me - Shit. I really do have MS.

5 comments:

Val said...
September 30, 2011 at 10:45 PM

my annual apt was last week too. at hsc.... between failing to walk 10 steps heel to toe, and seeing image after image of my lesion ridden brain (i wanted a five year mri since i started rebif.... I thought I was cured too)

I'm not!

It took me a couple days to get over it this time. I guess that's better than a couple months..

Nat said...
October 3, 2011 at 2:05 PM

I think it took me about 5 years to come to that acceptance... and it was only when MS started disabling me that I did. :0(

Nicole said...
October 5, 2011 at 11:27 AM

Wow. I do the same thing on every visit to my neuro doctor. I usually ask, "Do you think my MS has gone away? " I secretly hope that he finds that my original diagnosis was wrong and that I have some rare virus which is cured by drinking back to back six glasses of cold wine. No luck so far.

andy kopsa said...
October 6, 2011 at 6:25 PM

I am going through this too. So crazy, symptom free, act like everything is okay, then - wham! I love that you told your doctor that you don't believe in MS - that is priceless!

Ladyfingers said...
October 15, 2011 at 12:46 PM

Reading all of these comments has saddened me. I can't imagine what it must be like to hear your Dr. blurt out "yes you do have MS" when you are searching for an answer. I pray for all of you. Hope and Believe, a cure is on the horizon.

Little bits about my life with MS

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