Grey's Diagram Of The Body's Intercostal Muscles.

Lately my absence has been due to serious trouble with something frequently called the MS Hug or sometimes Girdle Pain or sometimes Girdle Band Sensation. There are a couple of theories  on what causes this. One theory is that it is just muscle spasms like all the other muscles spasms experienced by people like me. And by “muscle spasms” I mean awful unbearable crippling pain (although not always). The more popular theory is that the spasms are caused  by lesions on the spinal cord – I’ve never had an MRI on my spinal cord so I can’t tell you if that could be a factor here. It can be an exacerbation or a psuedoexacerbation. In my case I’m not sure. But I’m going to try to give you all the information I can about this abomination. Please remember, I work at a telecommunications company and have no medical background.

My first experiences with this were extremely painful, but slowly I determined that caffeine, stress, and heat were triggers for all of my muscle spasms, especially the ms hug. I cut out caffeine altogether, tried to use yoga and perspective to control my stress, and I try very hard to stay out of the heat. It can hurt for a few seconds to weeks. It can hurt a little or can be so painful that I end up in the ER because valium to the vein is my only hope. Sometimes, even that doesn’t help. The pain can be unreal. It can be unbearable. It can be so bad that you do not wish to live through it. My recent episode was the worst it has ever been and drove my blood pressure to incredible heights.

This particular episode lately was triggered immediately by the stress of Novartis telling me that my insurance company (and I work my ass off to make sure I stay in a job that keeps me in insurance) had refused to cover any multiple sclerosis medication due to cost. Just to be clear, we pay for the highest level of insurance just to make sure we have the maximum amount of coverage.

There are different types of pain. When I talk to Will, I refer to them as “flavors” of pain. But technically speaking, neurologists will usually call this a “parasthesia” which means that it’s an abnormal sensation caused by neuropathic pain. To me, this makes no sense. When I randomly feel like a grease fire is on my hand that is an abnormal sensation caused by my brain. The MS Hug, or perhaps let’s call it the “MS Grip Of F*cking Death” clearly involves pain that is caused by muscles gone nuts, even if they have gone nuts because there are wonky ass nerves between your brain and muscles.

My daily treatment, per doctor’s orders this round went something like 10 10mg of Valium per day, spread out over 5 doses of 2 pills each. Up to 6 7.5mg Loritab per day, sometimes 10mg Cyclobenzabrine, sometimes 0.125mg Hyoscyamine, sometimes 2mg Hydromorphone.  Between 2 ER visits I was given mostly Valium, Solumedrol, and Morphine. After finally believing I had beaten this episode of the hug, the pain would return and I would have to take pills again. When I finally really beat the hug, I went off the pills altogether. Normally, I can feel the hug coming on, take a couple Valium and it will go away. At worst, it comes on full force, I take some Loritab as well, or maybe Ambien and I’m better in the morning. Or perhaps I may be on a couple Valium a day for a few days in a row.

I was not prepared for the fact that I would have to go through opiate withdrawal from this episode. It has been extremely difficult, to say the least. It brings back the darkest parts of my life in full color or just leaves me with the blackest possible mood for no reason. Every stupid thing I have done, everything I have done to ever feel guilty about haunts me – from fights with my family to being hurtful to former boyfriends. Every instance where I’ve let a friend take advantage of me or abuse me replays over and over. After a few weeks, I think I’m finally past it and hope to never, ever have to go through either the hug or the withdrawal again. Let me reiterate – the withdrawal has been TERRIBLE.

So, what is this MS Hug thing? A lot of what follows is probably ripped off the internet because I was an English major who dropped out of college to pay rent rather than going to med school.

The MS Hug involves some or all of the intercostal muscles going into spasm – these muscles hold your ribs together and make your torso flexible. The image at the top of the blog post shows these muscles – the most important thing to remember is that they are located around the abdomen and are largely in between the ribs. Maybe this is different for everyone, but for me it typically starts on one side and at worst ends up wrapping completely around me from just underneath my breasts to the top of my hips. My muscles often feel like river pebbles to the touch. Clothes get tight because the muscles push out, but the muscles also push in, so vomiting ensues and I can barely breathe more than small gasps of air. You may ask if this is a stabbing, throbbing, etc etc pain. It’s all of the above. The most common description is that you’re being squeezed or crushed to death.

The intercostal muscles fill up the spaces between the adjacent ribs. They are arranged in three sets, external, internal and innermost internal, eleven pairs of each.

There are three principal layers;

1. External intercostal muscles, which aid in quiet and forced inhalation. They originate on ribs 1-11 and have their insertion on ribs 2-12. The external intercostals are responsible for the elevation of the ribs, and expanding the transverse dimensions of the thoracic cavity.
2. Internal intercostal muscles, which aid in forced expiration (quiet expiration is a passive process). They originate on ribs 2-12 and have their insertions on ribs 1-11. The internal intercostals are responsible for the depression of the ribs decreasing the transverse dimensions of the thoracic cavity.
3. Innermost intercostal muscle, the deep layers of the internal intercostal muscles which are separated from them by the neurovascular bundle.

Both the external and internal muscles are innervated by the intercostal nerves and are provided by the intercostal arteries and intercostal veins. Their fibres run in opposite directions

All muscles are in a constant state of readiness (tonus). Although muscles work in pairs and groups to create movement a muscle can only contract (pull) while the opposing muscle relaxes. However, tension is always maintained in both muscle pairs (tonus) to maintain stability.  Tension maintained in the relaxing muscle prevents the contracting muscle from overreacting. When the nerve impulse to the muscle, or muscle group are interrupted the relaxing muscle or muscle group receiving the nerve impulse to maintain its opposing tension will no longer work to maintain the equalizing balance and its opposite partner will then over-react causing the symptoms known as MS Hug.

Here are some ideas for alternative therapies to end the pain from an active hug (and my take on them) from what I personally believe to probably be most effective to least :

• Loosen Your Clothing (Hell yeah. Or just lose it altogether. Seriously. With over 75% of MSers being women, I’m just gonna say take off your bra, hands-down. Men reading this will probably agree, but not necessarily for the same reason)
• Warmth (A heating pad helps, except when the cats demand it back and I wake up with cat scratches all over my stomach. A hot bath helps sometimes, and sometimes not.)
• Fluids (Maybe – I’ll just throw it right back up. Better than dry heaves? Although if the pain is not too bad, it’s sweet when Will makes hot chocolate for me – it’s like a heating pad on the inside)
• Pressure Or Massage To  The Affected Areas (I can usually only tolerate this on my back – the pain is too great anywhere else.)
• Ibuprofen (HAHAHAHA – no. This started for me when I was already on 80 mg of Baclofen per day for spasticity, so that never helped me. Valium (Diazapam), sometimes mixed with Loritab (Hydrocodone) is my only solution. Unless you’re very much not like me at all. I have Lyrica, but I haven’t had a chance to try it yet. I have also heard of Lorazepam, Xanaflex, and Neurontin. Botox is a newly approved treatment. Anecdotal evidence suggests that marijuana helps with all muscle pain, other pain, and lots of other MS problems. I’m researching this now and I will try to make this my next post.)
• Analgesic Creams: (This sounds like a joke, but who knows.)
• Deep Breaths Through The Nose, Exhaled Through The Mouth (Who can breathe deeply when you can’t breathe deeply?)
• Creative Visualizations: Pretend It’s Not Happening Or Is Being Relieved However You Wish (OK – whatever – I started going into shock last time and only stopped shaking for about 20 minutes while the morphine worked – feel free to give it a try though!)

Here’s hoping that if you experience this, that this post will help you understand it better. Or if a loved one is experiencing this, you will understand better what they are going through. The pain can be unbearable, and the treatment can be dangerous.

If your treatment involves narcotics, perhaps your experience will be different than mine. Be cautious. Ask questions. Almost all of the drugs that I was on for this episode noticeably affected my ability to breathe even when I was unaffected by the hug.

Be careful.

Good luck to all.

UPDATE

I had meant to write this initially, but I have heard that Oprah had Dr. Oz and Montel Williams on a show at some point and spoke about the MS Hug.  On the show (which I did not watch) allegedly Dr. Oz said that the leading cause of death from MS was suffocation due to the MS Hug. This is not true. I have yet to find any evidence of a single death due to the hug, no matter how much you may feel like it. Can the MS Hug kill you? I don’t think so, but in a serious episode of it you will face very high blood pressure from pain and you may hyperventilate. Suffocation? No. Feeling like it? Yes.

Enough Said.

No entries in a while… for a few reasons. Mostly to do with the sadistic nature of private insurance.

Several weeks ago I got the call from Novartis that I had been rejected by my insurance for Gilenya. When I ask why, she reads to me “Cost exceeds limit per patient. No further review.” Within seconds, I had what must have been an attack. For the last few weeks I have been experiencing something that is commonly called “The MS Hug.” I can’t print the things I call it in my head. At it’s worst, it’s the kind of pain you don’t want to live through.

I have been to the ER where morphine and Valium to the vein had little effect. I have a purse full of narcotics to keep me out of the ER and, somehow, at work.

The next article I write will detail the ins and outs of the hug because there’s not a great deal of information out there. When I was diagnosed in December of ’08, I found one mention of it but the mention didn’t describe what it was like. When I developed it, I was horrified to find out what the body can do to itself. In one ER visit, on blood pressure medication, Valium, Hydrocodone, and Ambien, my blood pressure was still 168/122. On another visit when medication actually worked, I left with 113/70. Will has been an angel beyond words.

Pain is a very powerful thing. And I’m still not on any medication for Multiple Sclerosis. You may wonder why, since I signed all the paperwork for it in January when the process first began. If you’re on as much pain medication as I am these days, you may not be aware of the date, but we’re getting close to May. At this rate, the insurance company will probably win at not having to pay for my MS medication the entire year. Their shareholders will be ecstatic.

Per several phone calls with Curascript, part of ExpressScripts :

• they have rejected my request 7 times in the past weeks.
• they have never received a request to reject
• they have rejected both prior authorizations
• they have rejected one prior authorization but have one pending
• they have not received any prior authorizations
• they can only reveal their “additional questions” to the doctor if the doctor calls in (they will not notify the doctor)
• their “additional questions” are why don’t I first try every other medication available

Then, after enough calls to Blue Cross, HR, our HR Benefits liaison, etc I receive a phone call. When I return the call, I’m told that there is nothing on file for me. No prior authorizations, no rejections, no prescription. Somehow, there is now a blank file for me, marked “urgent.”

The lady on the other end of the phone line says, “If you want a prescription, perhaps you should contact your doctor and ask him to write one for you and send it in.”

My bitch switch has been flipped.

UPDATE – 04/20/11

Apparently after yesterday’s events, my case was sent to an “escalation group.” This afternoon my blank, urgent file was changed to contain a prescription, a recovered prior authorization form, and an overnight delivery to my home which is scheduled for tomorrow.

Amazing. Their escalation group only contains about 5 people, so if you’re one of the lucky few trying and not giving up when it comes to this prescription company, work hard and it will eventually happen. Tomorrow, it’s time to celebrate!

MRI images from the side make you look like a monster!

My first year of MS diagnosis wrapped up about a month ago and I’ve been reflecting on all the randomness and misinformation about the disease. As a lot of things in my life begin to come together (I’m growing up finally!) I find myself mourning the diagnosis more now than I did initially. Here comes the first downer post of 2010!

No one knows what causes MS and there is no cure. The idea of the cure is threefold: 1 – prevention of the disease, 2 – prevention of further progression of the disease, and 3 – reversal of disability caused by the disease. Theories are that those genetically prone to it may have it set off by exposure to a virus (probably the Epstein-Barr virus), that is is solely due to a vitamin D deficiency, and that a vascular disorder causes a backup of blood that leads to iron deposits in the brain. At any rate, the effect is that the immune system attacks the central nervous system, destroying myelin and the nerves that it protects. About 3/4 of all those diagnosed with MS are women.

For the newly diagnosed:

• Find a neurologist you like and trust. Don’t be afraid to switch.
• Most of your problems are invisible – don’t expect anyone to understand (sorry).
• Whatever feels unbearable right now will probably pass.
• Watch the webcasts, listen to the podcasts, and get Momentum magazine.
• Stay out of the heat at all costs.
• Holistic remedies are not proven to be effective. If it sounds crazy it probably is.
• Neurologic problems and muscle relaxers often lead to sleep apnea.
• Common MS symptoms are : fatigue, lack of balance, random pain from innocuous stimuli, spasticity, blurry vision, vertigo
• There are several types of MS. Relapsing-Remitting means you have an attack and then heal to some degree. Progressive means you have a gradual loss of ability that does not heal. Some people with relapsing-remitting will then develop progressive MS
• Deaths resulting from MS are usually caused by liver failure resulting from Interferon or by infection due to lack of mobility. In general your lifespan will not be shortened.
• You absolutely will never get the reaction you expect or desire when you tell someone about your diagnosis.
• No two people with MS will ever have more than a passing similarity of symptoms or progression.
• Caffeine makes all symptoms worse.
• You will eventually develop a sense of humor about what you’re going through. That doesn’t mean you won’t freak out from time to time.
• Cats are good for people with health problems. Really. My neurologist has a whole poster up about it.
• Everyone needs a “care partner.” Will has been amazing to me. Amazing.

I had dealt with spasms in my right eyelid for about a year when I went to my optometrist.  She decided that it was more than just stress and referred me to a lid specialist who treated me with 3 sessions of Botox injections over the course of nearly a year. Every time the Botox wore off the spasms would start again, so we pursued an MRI to check for nerve damage. I have a family history of MS – my father has it as well as 2 of his sisters.  The lid specialists said that he had about 20 new patients every week who needed Botox injections to stop those pesky eye twitches and none had ever had MS.

Being extremely claustrophobic I requested an open MRI. Having now had both an open and closed MRI I just recommend the closed one. Open MRIs are really not that “open” and take less detailed images. The MRI takes a long time, the contrast fluid feels terrible, and when you ask the tech if they see anything unusual they will lie badly. The best description I can give you of the sound is that it reminds me of some industrial music I’ve heard. You have to keep your mind occupied during the hour or two you’re in an MRI – being fascinated with myths I think I told myself the story of Isis and Osiris both times.

When I filled in the pre-MRI paperwork there was a list of things that can be caused by the contrast fluid – difficulty speaking, walking, etc etc. As I got out of the machine I felt immediately odd and discovered that when I tried to talk I couldn’t pronounce words correctly. Over the next few days my pronunciation deteriorated as did my handwriting and balance. From an outsider’s perspective I’m sure I seemed drunk. I began to think this was more than just the contrast fluid. We went to Virginia to visit Will’s brother, sister-in-law, and newborn nephew that weekend and I found myself having trouble with everything from brushing my hair to applying mascara. I was afraid to hold the baby much in case my arm betrayed me. On the drive back my arm suddenly became weak. Within the next 2 days I had paralysis in my right arm and hand and in parts of the right side of my face.

When I returned to work I was faced with a voicemail confirming my MS diagnosis, a referral to a neurologist, and an email sent to my employer’s mailing list about a coworker whose wife had taken her own life because of MS.

Filling in endless paperwork is great fun with a mostly paralyzed hand. The best way I can describe this is if you’re holding the eraser end of a 2 foot long pencil. Typing and using a mouse were nearly impossible, no one could understand me when I talked, and I couldn’t write legibly. Communication was difficult for weeks. My initial research told me that MS was a painless disease and that it doesn’t decrease your lifespan. That people who live near the equator don’t get it. That 15% of people with MS commit suicide. That 400,000 people in the US are diagnosed with it. Don’t tell your boss about it, and don’t expect anyone to give you the reaction you want when you tell them about it. There is a difference between MS symptoms and an MS attack. MS Symptoms : fatigue, lack of balance, random pain from innocuous stimulus, spasticity, blurry vision, vertigo, etc. MS Attacks (or exacerbations) : When a new, more permanent symptom occurs suddenly and lasts for more than 24 hours (like paralysis, muscle weakness, blindness, etc). I learned that there was something called an “MS Hug” but couldn’t figure out what that was. It sounded cute!

I had to tell my boss. I would be fired unless I explained why my productivity halted and I seemed drunk. MS is a TOTALLY painful disease. And a recent study reports that about 1 million people in the US have some form of paralysis from MS, so there must be far more than 400,000 with it. The first worry I had was that I would be such a burden on my husband. How long could I work? Only 30% of people diagnosed with MS can work, and even if I could how much worse will his life be with a disabled partner? My father has MS and so do I. Will my brother be the next to be diagnosed with it? My nieces? Then I worry about healthcare. When something like this happens to you the health insurance industry looks VERY different very quickly. I find myself with a huge crush on Britain’s healthcare system. Since Obama’s election stem cell research with regards to MS has made vast leaps. What happens next election if it’s suddenly banned (again) and our greatest hope for a cure vanishes (again)?

My first neurologist was terrible. He was dismissive, unhelpful, rude, and racist. After my first appointment with him he had me begin a steroid infusion on-site. The Solumedrol burned like fire going into my veins and made me taste metal for hours afterward. As I walk out I grab what looks to be a very encouraging publication on MS. Turns out a woman is celebrating all that she’s gained from a life of MS : a husband who has been there for her after she lost her house, most of their furniture, turned to welfare, and she can no longer leave her bed. Whoever approved that article needs to be flogged.

As new nerves began routing I could gradually speak more clearly and write a little better, but progress was like watching grass grow. Suddenly my fancy new nerves went mutinous. While I didn’t have strength enough to hold up a toothbrush with my right hand I would have a cramp that would close my fist so hard I made my own palms bleed. When I was in crippling pain 5 – 7 times a day with unbearable muscle cramps all down the right side of my body he shrugged and said maybe we could do another MRI. Then he found occasion to make fun of Native Americans after noticing on my chart that I am part Cherokee.

I discovered there was another neurologist in Greenville and promptly switched. I love my neurologist now. He reviewed my MRI and told me I had 4 lesions but that I should get a spinal tap to ensure that my insurance would pay for treatment. He prescribed Baclofen (a muscle relaxer) for the muscle spasms.

The spinal tap was interesting. I thought it would be quick but it was not. He made sure Will was sitting down because apparently husbands tend to faint during the process. He painted my back with something – iodine maybe? He joked about how he was a great target painter. I asked how his aim was. He said not to worry about that. Spinal taps feel crazy. Having a needle jammed between your vertebrae feels exactly like having a needle jammed between your vertebrae. The metal conducts electrical signals which shoot down your legs. You have to wait for fluid to slowly drip out until several vials are filled. Spinal fluid is basically blood without the clotting agent. With no clotting agent it takes a long time to heal and may continue to leak out after the tap. This is why headaches are common after this occurs.

Baclofen was a mixed blessing. Starting it caused the cramps to worsen dramatically. In one day it happened over 30 times before I went to the ER. After ramping it up for several weeks I still had muscle spasms and cramps, but not in the unbearable way I had before. It made me drowsy and loopy. I fall asleep multiple times a day and it was a month before I could safely drive a car. I began taking Rebif which is a disease modifying drug. This means it lowers the occurrence of MS attacks (by about 30%). Without insurance coverage this would cost me about $7000 for a 3 month supply. With insurance it costs $200. They sent a local nurse out to show us how to use it, and it comes with an auto-injector. Feels like a bee-sting going in, burns like poison once it’s under the skin. The injection sites look like I’ve been hit by a baseball. I give myself injections Sunday, Tuesday, and Thursday. The cats have learned to stay upstairs while I do this. Will has learned to wait till it’s over to ask if I’m okay.

Progression was very slow. Over time my handwriting returned to something like normal. Because I was using new nerve routes, there were times when addressing an envelope or writing out a check left me breathless and exhausted. I had been damn good at guitar hero (in my humble opinion) but my lack of coordination now relegates me to Easy Mode. I realized how much time I had wasted not writing, playing piano, drawing, etc. when I had the ability.

In autumn I finally learned what the MS hug is and it is not cute. It feels like you’re being squeezed to death and the pain is so intense it causes me to vomit. I nearly cried with joy in the ER when they brought out a tray of 7 (SEVEN!) mystery vials to knock me out with. I never even felt them put in my iv. The cure for the MS hug? Lots of Valium. Lovely, lovely Valium.

Less than a year after my first attack, which apparently began literally inside the MRI machine, I had a second attack following a bout with the flu. Apparently the flu often precedes an MS attack. This time it hit my right leg mostly which leaves me unable to walk far. Instead of having on-site steroid infusions I was sent to St. Francis for it. They are great. You get a nice little room with a TV and they dilute the stuff in a solution which isn’t painful at all and hardly tastes of metal. My recovery thus far has been like lightning compared to my first attack.

That brings us up to speed. It’s not fun to live with and, at least for me, the daily symptoms are more of a nuisance than the exacerbations. There are things I can do to help myself that I don’t. But I’m going to. New Year’s resolutions usually fall by the wayside, but here goes anyway :

• Regularly practicing hatha yoga improves balance and reduces spasticity. Mindfulness exercises such as this also improve your outlook and focus in daily life. I will (for real this time) start a yoga routine.
• Meditation and guided imagery help reduce the stress and improves the mental outlook for those with MS. I will (for real this time) start a meditation routine.
• Eating certain foods that reduce inflammation may contribute to less frequent MS attacks. I will (for real this time) start following a diet.
• Stress can lead to psuedo-attacks. I often joke to Will : “Don’t make me angry! You wouldn’t like me when I’m angry! My vision goes blurry and I fall down a lot!” I shall strive for apathy when people let their toddlers wander into the street or bicyclists scrub my car when weaving through stopped traffic.

Hopefully these changes will help slow my progression of the disease. More information is available on almost a weekly basis about MS, and misinformation is probably even more common.  As I weed through it all I will post the gems here. Let’s all hope for a cure soon — or even three!